Update

Feeling pretty down today... so physically and emotionally drained. Just... tired. Tired of all of it. Tired of trying to deal with all of these difficult behaviors. Tired of doing all of this diet and supplement stuff. Tired of worrying and wondering if I'm doing the right thing. Tired of having endless conversations about the same thing over and over again. Tired of feeling like I am constantly trying to talk my daughter off of a ledge. Tired of hearing little "jokes" and funny comments and just comments in general about my daughter (no one means any harm... but it can hurt sometimes. Kind of like when my mom used to say, "I can say that about my kids, but no one else had better EVER say anything like that!"). Tired of the looks I get sometimes and the way I KNOW we are being judged sometimes about our parenting and our daughter's behavior. Tired of hearing people speak in frustrated tones to my daughter. Tired of spending all of this money that we really can't afford to spend on all of this stuff. Tired of having to talk to the school and teachers so much about all of this. Tired of feeling resentful that WE are the ones going through this. It is all just... exhausting, in every way.  And I really don't get any breaks. Everyone tries to help... my husband does the best he can, our parents do the best they can... but when it comes down to it, I am the primary caregiver of my children... I am the one who is with them 12 hours a day.  This is my choice, and honestly, it's a darn good thing I have made this choice, because I'm not sure if anyone else could do it. Hell, some days even I can barely do it. Often I'm just hanging on by a thread. Not to mention that Olivia won't go with just anyone, at any time... she often has a VERY hard time separating from me. Her diet and supplements are complicated, which adds more to the mix of difficulty. I feel like I need a week to myself, by myself. OK, maybe a couple of days... just to relax, read, and sleep. I can't even remember the last time I had that. And I'm wearing down...

BUT... nothing I can really do about it. Sometimes I laugh when people say, "God doesn't give you more than you can handle," or "God chooses special people to parent special children," blah blah blah... nothing special about me, nor would there be about you if it were you going through this. You do it because you HAVE to. This is your CHILD. Your whole world. The love of your life. This baby that you prayed for and waited for. You HAVE to get out of bed every morning and do the best you can. So I do.

So now that THAT is out of the way, I have to say that I am really SO proud of my girl. She is being such a trooper with taking all of these supplements. Here is what she is taking as of today:

Morning: 2 fish oil chewable liquid capsules, 1 opened capsule of Sacchromyces Boulardii in a teaspoon of applesauce, and 1 tsp of Hyoscyamus homeopathic remedy. Afternoon: 1 tsp. of trace minerals mixed with some juice, green foods antioxidant chewables, and today we just added 1 capsule of Lithium Orotate (this is the mineral lithium, NOT the medication). I tried opening the capsule and giving it with applesauce, but that did NOT go well, so my big girl actually swallowed a whole capsule in a spoonful of applesauce! What a little trooper! Evening: Calcium chewables, multi-vitamin chewables, 2 more fish oil capsules, 1 more capsule of Sacchromyces Boulardii, (we are working up to 3 a day) 1 tsp. Hyoscyamus, and about 3.5 mg. of melatonin before bed.

GFCF diet is going well, but limiting sugars and carbohydrates is NOT going to be easy. I have a hard enough time with the GFCF diet... I don't know how I'm supposed to tell my sweet girl that she can't have some of her favorite fruits or treats. Seriously. It's just not freakin fair. I kinda sorta want the doctor to prescribe her an anti-fungal to knock out the yeast, and then try to keep it at bay with the higher doses of Sacchromyces Boulardii and ease into this kind of diet a little slower. But we shall see.

So even though I'm struggling, and preschool drop-off today was especially difficult and emotional... Olivia has been doing really well at school. And this is what is so hard for me to understand: she can have several good days... and then something happens and she has a difficult day or two. Sometimes there are triggers, sometimes there are not. But it's confusing because you would think today would have been a bad day, as she had a VERY hard time at drop-off... (major meltdown, couldn't really calm her, distract her, or redirect her... I ended up having to leave her, and watched one of her teachers carry her down the hall kicking and screaming... heart-wrenching and embarrassing, to say the least) but once that was over, she had a good day at school. And sometimes she has bad days when she goes to school in a completely normal, good mood. So I just don't get it. So much I don't understand. While there are explanations for some things... impulsivity, sensory processing issues, anxiety... there are several things that just don't have a rhyme or reason to them. One big puzzle that we are hopefully figuring out, piece by piece.

Biomed and homeopathy

Here we go...

*Continue GFCF diet

*Limit refined carbs and sugars

*Continue 4 fish oil capsules per day, and also try to get 1 tsp. of olive oil in per day or eat olives

*Continue 3 mg. melatonin at bedtime for now

*Stop mixed probiotics and begin Saccharomyces boulardii- start with 1 capsule per day and work up to 3

*Begin Hyoscyamus homeopathic remedy- dissolve 2 pills in 1/2 cup water, give 1 tsp. in morning and 1 tsp. at bedtime

*After a few days on homeopathic remedy, begin trace minerals- 1 tsp. during the day

*After three days of trace minerals, begin lithium mineral supplement- 5 mg. per day

*Will also need to start an antioxidant soon and B-complex in the future

*Retesting urine for possible infection, and also doing an ASO Titer to check for Strep antibodies (I asked her to please rule out P.A.N.D.A.S.)

So... this is where we begin! Wish us luck. Pray for us as parents, that we can be strong, kind, understanding, and most of all... patient. Pray for our sweet girl that she can feel good about herself, be happy, and stay calm.

DAN doctor follow-up

OK, so I have been processing the enormous amount of information I received on Thursday regarding all of Olivia's test results. It seems the biggest thing screaming at the doctor is a yeast problem. She said her stool analysis came back pretty good, but the Organic Acids test is showing a pretty big fungal imbalance, most likely in the gut (though I have heard it can be elsewhere, like the brain... ugh). She is also having trouble metabolizing fatty acids, as well as digesting and absorbing protein. She has high ammonia markers, likely due to her not breaking down proteins well. She had a mild reaction to milk, and needs to stay away from it. We will stay GFCF for now, as the doctor said that if she has not had gluten in her diet, the test may not show a reaction to it, so we're  not going to mess with it at the moment. There is evidence of chemical and heavy metal exposure, particularly to xylene, aluminum, and silver, (it was explained to me that we are all exposed to so many of these things, but the difference is that Olivia's body is not sulfating or detoxing the way that it should be) and she tested low in trace minerals and very low in lithium.

It's amazing to me what all of these tests can show us. The treatment plan involves killing the yeast, and taking several supplements and homeopathic remedies. We should make additional dietary changes as well, mainly limiting intake of refined sugar and carbohydrates (feeds the yeast). It is my understanding that alot of what was reported above can happen as a "domino effect" from yeast overgrowth. So... a lot of work to do on the health-front.

Personally, I have really been struggling emotionally. Seeing your child hurt or struggling... I don't know if there's anything that could hurt a mother more. She's had a couple of rough days at school, one in particular. But what everyone (including myself and her teachers) needs to remember, is that she has ALOT of good days, some VERY good. There was a situation last week that was handled badly, in my opinion, and to say it broke my heart into pieces... well, that's an understatement. While I can understand the teacher's frustration, (believe me, I live with my daughter and know how hard it can be, and I've also been on the other side of this as a teacher) I believe her words and actions were the result of just that- a frustrated teacher who did not think things through, nor check with her supervisor on what she was threatening (to no longer allow my daughter into her afternoon enrichment class on Thursdays). I am very forgiving of how this situation was handled, as this school has been very good to our family, I just pray that nothing like this happens again. The whole team will be sitting down together after Thanksgiving (us, her teachers, the director, her BSC- behavioral specialist- and the county director of the agency providing services) to come up with a behavior plan that takes into account the problem behaviors at school AND my daughter's diagnoses. I just think a big part of the problem is that the teachers just have no idea how to deal with some of these situations (through no fault of their own). There needs to be some training on some of these increasingly common disorders, because believe me, my daughter is not the only one struggling at this school, and she certainly will not be the last to come through their doors, unfortunately. It is these kids- the very high-functioning ones who don't qualify or belong in a special-needs preschool- that so often get lost because the teachers are not trained to deal with any kind of special need. Now, she may in fact need a TSS at school, and that's fine... as they really just aren't equipped to deal with some of this stuff, like they hopefully will be when she attends public school kindergarten next year (I think I just had a panic attack). I was just REALLY hoping she could do this. And I would like to believe that she CAN, with some modifications. I just don't know if the school can provide the modifications without a TSS. The problem is it's not a quick process. We're ahead of the game because we already have an agency and BSC involved, but we still need another eval to prove medical necessity, then there's a county meeting to determine whether they will approve services in school, or not. I also just heard through the grapevine that it is very likely that they are doing away with services for ADHD and the like, and she needs to have an autism spectrum diagnosis in order to qualify come this spring. So... I don't know what's going to happen there. It is very frustrating because when you put her three diagnoses together, (ADHD, Anxiety Disorder, and Sensory Processing Disorder) it often can appear that she is on the spectrum. And if I'm being 100% honest here, I am not convinced yet that she does not have Asperger's. We shall see how things transpire over the next several years, I suppose. Either way, that is not the diagnosis that she has, even though SO MANY of the behaviors are the same. We still need help. But it may be taken away. And that's bullshit. But... it is what it is.

Yesterday my babe had her preschool Thanksgiving performance. My usually happy, upbeat little girl who absolutely LOVES to perform had a pretty bad day. She had practiced and practiced her lines and songs and she was SO ready... but her day got completely thrown-off by some relatively normal occurrences... it's just that these kinds of occurrences are anything but normal for Olivia. She had been fixating on the fact that Mommy forgot to send something last week with her to share for Letter H week. I don't know how I missed this announcement or lost track of it in my head, (could have something to do with making her special homemade hot chocolate that morning since someone was bringing in hot chocolate, or gathering her special ham and cheese since someone else was bringing ham and cheese, or maybe just my emotional meltdown that had happened over the previous two days) but it didn't matter- she would not let it go. So we made sure to take something on Tuesday and I asked her teacher if it was okay if she shared something, she said yes, that was that. Well, with all of the craziness of the Thanksgiving party and play, the teacher forgot. Totally expected, but of course Olivia didn't remind her, and when she realized she wasn't going to be able to do so, she was pretty upset, which came out DURING her play, when something else happened to throw her off. She was fidgeting around on stage, as she does, and stood on her drum and ended up breaking/bending it. I should have known better and gone right up there and fixed it immediately, but I didn't... and she came off the stage and just started to melt down. After that it was pretty much over. She completely missed her turn to say her lines and she came off the stage and cried a couple of other times. It was just heartbreaking to watch and there was nothing I could do about it. That's not my girl! She LOVES to be a star, and was SO READY. But when things go awry or not as expected, she just can't handle it. I am still crying about it every time I think about it, as I am about what happened last week.

I was reading something the other day about parenting a child with special needs... something about allowing yourself to grieve for the child you thought you would have, etc. and then beginning to accept her for who she is. While I understand and appreciate the comment, something about that statement doesn't sit well with me, or perhaps it just doesn't apply to the type of special needs Olivia has. She is EVERYTHING I thought she would be, and MORE. Way, way more (sometimes too much more- LOL)! She is not perfect... but who is? She is not a "typical child," that's for sure. But she is SO MUCH MORE than typical, and because of that, she gives me even more than a typical child would. Does that make sense? She is SO PASSIONATE, so full of energy, so full of life, and has more love in her little body than you can imagine. It certainly isn't always easy being her parent, but I feel like I am rewarded so much more. Does it make me sad that she can't sit nicely for a tea party and behave like a little lady? Not really. I really don't care. Maybe occasionally it bothers me a little that she's not a typical girly-girl, sweet little lady... but only when I compare her to others. When it comes down to it, there's absolutely nothing missing... there's nothing I have lost or that I am grieving... there's just MORE. And we just need to keep working to channel properly what's "more" about her. And that is not reason to grieve... that is reason to celebrate!!

ADHD Awareness Week

A poem by Brandy Nicole Head, posted on ADHD Awareness Week's Facebook Page...

He's bouncin' off walls, a super ball gone insane,
He runs through your world like an off-rail freight train,
Interruptions are constant, tantrums galore,
When it's time to do homework, he's gone, out the door.
The drama is constant, oh his foot fell asleep,
He moans and he wails, the theatrics run deep,
School is a nightmare, the teachers are lost,
If they only could see, he is

 worth the cost.

He is brighter than most, as most kids are,
And with patience and love, I know he'll go far,
But what I must take from well meaning friends
Don't let him do that. Oh these rules that he bends.

You're not a good parent. Your child's really rude.
His temper's Outrageous. He has hands in his food.
He hears this and wonders, just what's wrong with me?
I tell him, You're special, you have A.D.H.D.

Now A.D.H.D. is a gift from above,
It teaches us grown-ups how to strengthen our love.
It helps to teach your teachers, no two kids are the same.
You have awesome energy that could bring you great fame.

You don't need much sleep, you never wear down.
You're silly and funny, when you act like a clown.
You've felt lots of pain from what people have said,
But you pray for those people when you go to bed.

So you try every day to make a fresh start,
For God gifted you with an extra big heart.
As I look at my child, he sees through my soul,
My heart feels like busting, as I realize my goal.

I know this boy like no one else could,
He's a blessing to me, he's strong and he's good.
So I'll love him and guide him through the worst of the worst,
And he'll make a great man (if I don't kill him first).

I'm kidding of course 'cause I know what's to be,
When I look in his eyes, I see a reflection of me.

Two weeks

Two weeks since I posted... really nothing new. LOTS of ups and downs over the last two weeks, good days and bad... with no real rhyme or reason that anyone has been able to figure out. I'm doing a sticker chart with my daughter for good days at school... i.e. no leaving the classroom without permission, good listening during circle time, etc. I know she's been struggling at times with impulse-control and a couple of times with (kind of extreme) emotional reactions to having her feelings hurt and/or disappointment. Her BSC (behavioral specialist consultant) has visited her classroom twice, and both times was very pleased overall with how she performed. I believe she has offered some thoughts and suggestions to her teachers, as has her Occupational Therapist. I am contacting the Intermediate Unit to see what she may qualify for in school as far as OT, etc. is concerned. Her BSC feels that the classroom itself can be pretty overstimulating for her, and this is a very different classroom than she has been used to over the last two years. For one, the class size is bigger... she has never been with more than 10 children total, with a 5:1 ratio. This year there are 14 students at a 7:1 ratio, and from what I've seen, there are some very active kiddos in there, (not just mine!) so the teachers really do have their hands full. I will say that the lead teacher is SUCH a dear... so, so sweet, and the assistant teacher is nothing short of FABULOUS, especially with my daughter. You know how some people just have a gift with certain kids? Well, she's one of them. She has this way of calming her when she's upset... taking her out into the hallway and helping her with deep breathing and thinking of the things that make our hearts happy. :) The classroom itself, however... I'm just not sure about. It doesn't seem QUITE as structured as I've seen in previous years, and that's just the style of the teacher. I'm not sure how well my daughter "fits" with that. But I keep telling myself that over the years, there are going to be LOTS of different kinds of teachers, some that she will fit well with, and some that she won't. In fairness, I haven't observed a class, I'm just going by what I see initially and what the teacher tells me about how things run- i.e. the kids are kind of free to come and go to the restroom (across the hall... another difference, as restrooms were inside classrooms in the other 2 classes) and get a drink from the fountain, etc. Between ADHD and SPD, with lots of distractions between the classroom and the restroom- i.e. there are musical instruments stored in a room next to the restroom...or at least there were last week when her BSC was there... well... my daughter LOVES music, and if she sees those sitting there... um, what do you THINK she's going to do??? LOL. You have to know my kid. And I think that bothers the teachers, but seriously... I'm sure it takes EVERYTHING she has to restrain herself from playing with the instruments, from not touching things in the hallway, etc. Snacks are within plain sight/reach, and one thing I've learned about my daughter- if you don't want her to touch something, it had better be out of sight/reach!! So yes... my daughter is tough to manage, but I do feel there could be simple changes in the classroom that MIGHT help. Only so much you can do, though. I've been on the other side of this as a teacher, and it's TOUGH and it's frustrating. And I LIVE with my daughter... so I KNOW how hard it can be with her, so I'm CERTAINLY not placing blame on ANYONE... it just is what it is, you know? We LOVE this school, and it has been such a big part of our lives the last 2 years, that I wouldn't dream of leaving unless it were really necessary. It's hard to hear from a teacher, though, that often times it's as if she almost needs "one on one." That forms a picture in my mind of her needing special ed. services and an aide in public school next year. Which is fine... but... do you know what I mean? I know there could be worse things... you just worry so much about EVERYTHING as a parent. You think about the social stigma and how are the kids going to treat my babe if she's "different." All I want is for her to be mainstreamed and be able to function like the other kids... be able to maintain good friendships, listen to her teachers at school, and succeed. Maybe that's alot to ask and hope for, but that's what I want. I hope and pray we get there.

We've been struggling a bit at home, too. A lot of defiance, some physical aggression when she's angry, and definitely verbal aggression. I think the hardest thing for us is how she is with her little brother... she is just SO in-his-face and touching him all the time... most often it's not malicious or intentional, but because she's so rough and so "on top of him," accidents happen. The other day she was hugging on him and they fell over, and apparently his head just missed the concrete outside. So we get scared that he's going to get hurt... her, too.

If you are a prayerful person, I think the prayers we could use most right now are for us as parents. Pray for my husband and I to be the kind of parents our daughter needs. Pray for patience, understanding, and guidance on how to best take care of her and to help her become the best little girl she can be! :)

DAN doctor follow-up is now scheduled for Nov. 8. My kiddos did not have school yesterday, and I would not have been able to focus on a 1-hour phone call with the doctor. This is important stuff, and the next appt. I could get in person or over the phone is Nov. 8... so again, we wait... but that's ok. Slowly but surely, we'll figure this out.

New blog name?

I think the word "quest" sounds dumb. Like way too over-dramatic. Journey, maybe? Though the definition for quest is as follows: A long or arduous search for something. So... long...? I hope not, but maybe. Arduous? Yep. I don't know, quest sounds silly to me today. Like some Dungeons and Dragons thing, or a space voyage, or something. Thoughts, opinions, ideas?

Tough couple of days :(

So my sweet girl has had two pretty tough days at school. Lots of impulse-control issues. Trouble listening and paying attention. Seeing some of the same stuff at home, along with some mean outbursts and just a general, overall kind of bad mood. I'm not sure what's going on. I know it's going to take some time for the gluten and casein to get out of her system... but like my husband said, we can't blame gluten and casein every time she has bad behavior. Or can we? We don't know. I also had to take her off of her supplements until we have some more blood work done tomorrow... she hasn't had her DHA, probiotic, or multi-vitamin since Friday... so I'm wondering if that is contributing to this? I could just cry, because she was doing so well. The first couple of weeks of school were GREAT, and after talking with the teacher a week ago, who told me that she hadn't seen any indication in the classroom of our daughter's diagnoses, I was just so thrilled. That all changed on Tuesday, when her teacher asked to speak with me after school. :( I TRULY believe this... and I need to try harder to REMEMBER this when times are tough... but IT'S NOT HER FAULT. I know in my heart of hearts that it's not her fault. In the words of Dr. Ross Greene, "If kids COULD do well they WOULD do well. In other words, if the kid had the skills to exhibit adaptive behavior, he wouldn’t be exhibiting challenging behavior. That’s because doing well is always preferable to not doing well." Our daughter has truly shown me this, time and again, so I believe it. I just need to always remember it.

What is biomed?

I get asked this question a lot. What is "biomed," or biomedical treatment? It is an approach most commonly associated with treating autism, but is also used to treat ADHD, asthma, allergies, and other conditions. The guiding principle is simple: "Remove what is causing harm, and add what is missing," stated by the Autism Research Institute. According to Dr. Sidney Baker, M.D., "Difficulties of children in the autism spectrum with respect to detoxification, inflammation and oxidative stress have been studied, described, presented and published, leaving no room for doubt that these three interconnected domains are crucial to understanding the origins and treatments of our children’s problems."  My daughter does not have an autism diagnosis, but some doctors actually believe ADHD is in fact a milder form of autism, and when you put her three diagnoses together, there are several similarities. In truth, it doesn't really matter WHAT the diagnoses or labels may be... what matters is where she struggles, with what she struggles, and why this may be happening. After unsuccessful attempts with and horrible reactions to conventional medications, we decided to try biomed. At first, I was a little skeptical. Really, even up until last week, I just wasn't sure about the whole thing. We cut out gluten and casein for 2 months. We saw some changes, but we just weren't sure how big the changes were, and to what we could attribute them. All it took for us was a food challenge where we  added those substances back into her diet! After about a week of gluten and dairy being back in her system, we knew we had to go back to GFCF. If just doing this has shown improvement, I'm anxious to see what the other recommendations may do! Know that biomed is not a one-size-fits-all approach. It is tailor-made to each individual, based on a significant amount of testing and information that a practitioner acquires. We personally decided to go with a doctor east of our closest city who has been doing this for many years. She is a M.D. and N.D., (medical doctor and naturopathic doctor) and practices functional medicine and homeopathy. We felt most comfortable with her many years of experience, as well as the fact that she also has her conventional M.D. license. When her first recommendation was to remove gluten and casein from our daughter's diet, I have to admit, I really didn't want to do it, but knew I had to give it a try. There is an "opiate theory" and "methylation theory," both of which are widely accepted by biomedical practitioners. The following are taken from http://www.child-behavior-guide.com:

--------------------------------------------------------------------------
The Opiate Theory

Gluten is an elastic protein with a sticky, gluey texture that helps give wheat products the ability to bake properly. It is commonly found in wheat, rye, barley and some oats, which means most carbohydrate foods will contain gluten. It is not found in corn, rice or millet. The other ingredient, casein, is usually found in dairy products. However, it can be hidden in other foods, such as whey protein.

In America, a large percentage of the population lacks a particular enzyme called DPP4 that breaks down gluten and is also involved in the digestion of milk products. If gluten is only partially broken down it creates partial proteins, or peptides that are similar to opiates.

These opioid peptides lead to feelings of spaciness, and even intoxication for children that lack the DPP4 enzyme. The feelings and pleasure these foods cause can become addictive to children, which may explain why many children become obsessed with certain foods.

The Methylation Theory

The process of methylation helps to remove built up toxins within the body. If this process is not working properly and toxins build up in the body, it’s possible that the resulting effects lead to autism signs, symptoms of a sensory disorder or ADHD symptoms, especially if a child is exposed to the toxins lead and mercury.

If a child is having problems digesting gluten and casein, the partially digested proteins damage the process of methylation. This process is critical for maintaining proper levels of neurotransmitters – particularly dopamine, which is the neurotransmitter most often involved in ADHD.

------------------------------------------------------------------------------

What is particularly fascinating to me is the lessening of my daughter's impulsivity, as well as an increase in her ability to self-regulate. She has had four evaluations at this point over the last 7 months, three of them by licensed psychologists, and at three of them, written in these evaluations, her mood was stated as "euphoric." Yes, euphoric. I'm talking... running down halls and into rooms with no regard to where she was going, jumping on furniture, climbing onto exam tables and attempting to jump off of them... you name it. Zero response to redirection, actually laughing at those who were trying to redirect her... I say this with the utmost love of my daughter and respect for those with mental illness... but essentially acting like a crazy person. It's difficult to describe unless you see it for yourself. When I see this decrease by simply removing these two substances from her diet... well, it makes me a believer.

Why is my child, and not yours, effected by gluten and casein? Why does she need biomedical treatment? There are various reasons... a genetic predisposition, perhaps, along with a "toxic overload" on her body. Toxic overload can be caused by many things combined... everything from foods we eat, vaccines that we get, chemicals we are exposed to, and the ability, or inability, of our body to detoxify these substances. There are other things such as yeast overgrowth in the gut, leaky gut, and inflammation that I am learning about as well. I talked to a wonderful momma recently who has two boys with Asperger's. She strongly believes that her boys' diagnoses are so genetically ingrained in them, as she sees so much of her husband and her father-in-law in her sons. I completely get- and respect that. I think a mother knows, don't you? See, I don't feel that way about my daughter. Her anxiety... sure. Her strong will and emotions? Absolutely. She gets all of that honestly. The other stuff... Sensory Processing Disorder, ADHD... there's NONE of that in the family. The truth is, she probably didn't respond well to conventional ADHD meds because she probably (hopefully) doesn't truly have ADHD. Wouldn't that be something? Maybe it's just wishful thinking on my part... and I'm sure this won't be perfect and be a magic cure-all... and I'm not expecting that. All I want is for my daughter to be able to function in a school setting, to be able to learn and grow in school and at home, to associate and play properly with her peers, for our family to have a happy and harmonious home life, and to just give my daughter... both of our children... the absolute best chances for success! THAT is why I am doing this. And let me tell you, after a week of having gluten and casein in her system, we started to see a very noticeable increase in lack of impulse-control, as well an increase in hyperactivity and that "euphoria" in certain situations that the psychologists noted.

This is one of the most informative articles on biomed that I have read. Note where it says "No parent is able to do everything on this list," nor do I plan to. We will be coming up with a plan, along with her doctor, based on prioritizing what she may need most, and what we are willing to do. Her doctor has a feeling that we are looking at a leaky gut issue as well as a deficiency in DHA... so we may be looking at continuing GFCF, continuing probiotics and DHA supplements, perhaps adding in a yeast-killer as well as some other supplements... we shall see. Nothing crazy. Simply "removing what is causing harm, and adding what is missing." 

And... we're back to GFCF

Wow- I honestly did not expect this, but the changes were in fact big enough for us to go back to GFCF. I'm not sure if my approach is going to be as strict, but it is going to be strict at home and when I have the ability to control it. We're going to do our best with snack time and special events at school, out and about at special events and birthday parties, etc... but if there's something that I can't give her a suitable alternative for, and she is melting down because she can't have it... (in public, at a party, etc.) it can just cause more trouble than it's worth, for all of us. So... that's my approach... to do the best we can, within reason, and get right back up on the horse if we fall off one day. In the meantime, we need to stop supplements for 5 days in order to do the NutrEval test accurately, and get this: I just found out that Highmark recently decided that this is one test that they will pay for IN FULL!!! The list price of this test is around $900!! Maybe strides really are being made with insurance companies realizing that biomed does help many, many people, just like not-so-many years ago that they discovered with chiropractic. Now, I will say that we are paying a pretty penny to see this doctor and to have these tests done, but we are very grateful to have our insurance paying for the bulk of these tests. There are unfortunately many people who are not so lucky. Just to give you an idea...
Blood work: over $1,000 (we only had to pay $17)
Comprehensive stool analysis: $400 (we have to pay $169)
Hair analysis: $100 (we have to pay $55)
Urine peptides: $110 (but we decided not to do this one)
Bloodspot TRIAD: $916 (we have to pay $183)
NutrEval: $900 (we pay nothing!!)
First doctor's visit: $350 (doctor doesn't participate with insurance... ugh)
One-hour follow up: $200
Supplements: TBD; At this point we are spending about $100/month and this is almost guaranteed to increase

So I look at this and realize how lucky we are... and how not-so-lucky many, many families are. The cost of these tests and doctor's visits combined is over $3,800 (for us about 1/4 of this)!! And that is just to get started. Now I just wish that insurance would take a look at paying for some of these recommended supplements, which can get very expensive as well! There is a fabulous program with Generation Rescue for families that qualify... you need to have an autism spectrum diagnosis, (which our daughter does not) plus you also need to qualify financially, which we wouldn't... but what a great program for those who need it! http://www.generationrescue.org/resources/rescue-family-grant/

Wish us luck with our continuation of biomed! If I wasn't before, or if I was a bit skeptical... I am now much more of a believer, based on what I have seen after adding gluten and casein back into our daughter's diet. There is definitely something to this! I'm sure not for everyone, but certainly for our daughter. I can't say that it was perfect and changed everything, but it changed alot- mainly her impulsive behaviors were effected, and that is HUGE.

I will keep you posted as we continue... our follow-up is now scheduled for October 18, since more tests are being done, and we can just talk about it and address it all at one time. Waiting for everything will help us to determine which steps to take first, which can wait, what may be most effective... will help us to prioritize. In the meantime, sticking with GFCF as much as possible. Say a prayer that my sweet girl can learn to be more accepting of having to be "different."

Food challenge

So... we decided to do a gluten and casein challenge, for two reasons. One... we're not sure if it's working, or how well it's working, if so. Our daughter has been gluten and casein-free for 2 months, and we've noticed SOME changes, but we're not sure if the changes are big enough to have her stick to the diet, or if the changes are in fact related to the diet at all. Two... in order to get an accurate reading on one of the tests the doctor wants to do, she has to have some gluten and casein in her system. Ummm... apparently I shouldn't have put off that particular test... my bad. This stuff can be VERY confusing. So... here we go. Today is her third day back on gluten, and tomorrow we will add in the casein again. She will basically eat whatever she wants for the next few days, with us being sure she has some dairy, and then we will go from there. If I'm being completely honest, I really do hope she can just eat what she wants (within reason). This is EXTREMELY hard on her, and in turn, it's extremely hard to watch for those of us who love her.  This is supposedly an all or nothing diet, but I have to wonder, and most likely I will do this anyway... can I just do GFCF at home,  and then school, birthday parties, etc., not put her through that emotional stuff? Maybe give her digestive enzymes when I can? I don't know. Behaviorally, yes, I hate to admit that things have been different yesterday and today. Yesterday I don't feel was an accurate picture because she had a horrible night's sleep, and that always has an effect on her behavior. To me, the real test is going to be next week at school. I have been so impressed with what I've seen at school and what the teachers have said, so if there is a big change next week, well... there's my answer, don't you think? As much as I'm going to hate to hear it. My babe's only 4, and as smart as she is, (she GETS it, but denies it) she just HATES it. It makes her cry and cry and obsess over what she can't have. And that did not get easier or change one bit after 8 weeks, and honestly, I don't think that WILL change. So there's a big social and emotional piece to this for us that can be just as difficult as some of the behaviors we are dealing with. But if this effects school and her ability to learn, listen, and socialize appropriately with her peers... we obviously have to go back to GFCF. What sucks about this is that she's going to have some time having food she really wants, and then possibly have to go back to NOT having it. She is not going to handle this well. Ugh. Wish us luck!!

Today...

I want to give up on GFCF. Not on biomed, but on GFCF. I'm not going to... yet. I don't think. Maybe, I don't know. I am just not seeing the changes that many people see so quickly. Maybe, just like with the stimulant meds, she's just one of the kids that GFCF is not going to help. I DO think there are some things that are going to come up on testing, I DO think she's going to need some supplements and perhaps avoid some other foods, but honestly, I am just so tired of her having to avoid certain foods, especially the ones that she begs and cries for. In fact, I HATE it. It breaks my heart often, as her emotional reactions are almost too much to bear. I KNOW people have it so much worse, I do. Today, I just feel like I can't take it anymore. I can take everything I have to do... it's really not that big of a deal at all. I just can't take how it makes fer feel emotionally, when it's not making any difference. If I felt in my gut that this was helping her, I would keep on keepin' on... but I don't. I don't know what to do.

Anyone who knows my daughter...

knows that THIS illustrates PERFECTLY just WHO SHE IS. My girl. :)

courtesy of http://humortrain.com/

 

Back to school

Holy back-to-school jitters!! And I mean for Mommy!!! School starts tomorrow and I am nervous. This is definitely the most nervous I have been. This is my daughter's third (and final) year of preschool... you would think I'd be okay... but so much has changed. There was no separation anxiety when she entered the 2 year-old class... she practically shoved me out the door. :) Same thing for the 3 year-old class... anxiety didn't start until November of that year. So this is the first year we will be dealing with this on the first day of school, and there's SO much more than just that. For one, she will be going into the 5 year-old class. By birthday cut-off date, she should have gone into the 4 year-old class (though only by 6 weeks). We went back and forth about what to do... what would be best for our daughter. The majority of her classmates last year were 6-9 months younger than her, and I swear this isn't a bragging momma just bragging... but our daughter is very bright, and as far as academics are concerned, she could probably even go to kindergarten this year. Socially, however... obviously a completely different story. Oh, the comfort of staying another year with her truly FABULOUS teacher from last year, (she teaches both the 3 and 4 year-old classes) who not only is fabulous, knows exactly how to handle my daughter, but also has personal experience in dealing with much of what she struggles with. We ultimately decided to go with that teacher's recommendation, as I trust her immensely, and her recommendation was to put her in the 5 year-old class. The bad news is it's four mornings a week, (double what she went last year) she will have a new teacher, and many new classmates. The good news is- I have been told that this teacher is one of the sweetest, kindest, most patient people in the world, and puts her heart and soul into her work. What is also wonderful news, and gives me A LOT of comfort, is that the assistant teacher from last year's classroom will be in the 5 year-old room this year! She is SO GOOD with our daughter and has a very calming effect on her. Our daughter's eyes just lit up when I told her that she would be one of her teachers again this year. So that really helps, along with the fact that her best friend from the last two years is going with her to the 5 year-old room, as well as three other classmates from last year.

My other HUGE anxiety is this whole diet thing in school. It seems to be a very food-oriented classroom... ugh. Lots of bringing in snacks to share for the letter of the week, cooking together, favorite snacks for birthdays... that kind of stuff. It's going to be hard enough when/if she can't have the same snack as the other children during regular snack-time. I'm going to do my best to always have a suitable, similar alternative, but it's not always going to be possible. I plan to send in a snack bin of safe snacks, and the teacher will always let me know what the class will be having for snack time. I will also be trying to make these... wish me luck! Goldfish crackers are a staple in her preschool, and she is REALLY missing them. I bought a teeny-tiny little fish cookie cutter... this should be fun!! :) I also offered to provide the class with GFCF alternatives for cooking when they do cook together, and the teacher was fine with that. So... cross your fingers!!

Speaking of the diet... there have been no infractions in the last two weeks, and nothing has gotten better, damn it. Behaviors actually escalated 5 days before that infraction, (when she ate Goldfish crackers off of the floor at Little Gym camp- ugh) and I checked and double-checked everything. So I'm not sure what's going on. She had a really good couple of weeks, and we were hoping it was because the diet was working! Now, we're not so sure. We just don't know what to think. We have a follow-up with her DAN doctor on September 21, so we're definitely keeping it up until then, and actually we will be keeping it up until at least her second follow-up, which is when we should get food sensitivity results. We will most likely do a dairy and gluten challenge (separately) before we would ever go back to dairy and gluten, and that will basically involve tracking her behavior for a week before doing the challenge, then letting her have a yogurt, for instance, and tracking her behavior for a week or two afterwards (depending what her doctor says to do). If nothing is different than the previous week, then we can go back to dairy, (though we will probably still limit it) then essentially do the same with gluten. I won't change anything else in her diet (based on food sensitivity tests) until we definitely rule-out (or rule-in) gluten and/or casein sensitivities.

This has NOT been easy, though I wasn't expecting it to be. I can handle meal-prep... it's totally no big deal at home. I can handle snack-prep and always taking special snacks, and even coolers full of safe foods for her to eat when we're out and about at events... amusement parks, birthday parties, etc. What I can't handle, or have a VERY tough time handling, I should say... is when she LOSES IT when she can't have something that she wants. Case in point: her cousins' birthday party last weekend. I was SO prepared (or so I thought) with GFCF pasta salad, hummus, corn chips, pretzels, and of course cupcakes and ice cream! I knew they were having a fruit salad and plain veggies, and they were even SO kind as to roast a chicken with no spices on it just for us! How would I have ever predicted that the meltdown would be because they had little snack-sized bags of different chips??? Damn Cheez-Its!!!!!! And I think she wouldn't have noticed if the person she loves most in the world (her cousin who is 6 weeks older than she is- they are basically like sisters) hadn't had Cheez-Its! Well, let me tell ya- she FREAKED. FREAKED!!! It was so heartbreaking. Not only was she screaming and crying... she was saying things like, "I promise I don't have food allergies, Momma... please PLEASE can I have Cheez-Its??" :( It was so sad. She was not happy with the Fritos snack-bag I gave her, and obsessed about the Cheez-Its for a good hour (though the worst of it was over in about 20 minutes). Who am I kidding?!? She was still obsessing about it at bedtime, crying because she couldn't have Cheez-Its like her cousin. :( She has since talked about it at various times, and I do my best to explain it to her, but she's four years-old, you know?  I'm terrified of preschool-friends' birthday parties... goodness, what will I do at Chuck E Cheese, for instance?? ANYWAY... that's that... I am learning that the tough times are out and about, but I can handle that... just can't handle when other kids have something she desperately wants... SHE can't handle that, and that's part of her make-up. I knew from the beginning that this would be our biggest challenge. But... power-on, we will! At least for now.

Wish us luck at school tomorrow!!! :) My big boy will also be starting tomorrow... though it's not "officially" preschool for him. He will still be attending the Mother's Day Out program at our daughter's preschool, though 2 mornings a week this year. It is very much set up like a preschool classroom, and has been REALLY good for him. He loves it, and gets that important structured school setting, plus is learning to be away from Mommy. Who am I kidding? As much as I love my kiddos, and cherish the fact that I am able to stay home with them... the little breaks will be very good for me, too. :)

So much to say...

Yes, there has been a little setback, but I have to say... even with the little setback, life is very different in this house. For the first time in a long time, I feel like I have been able to just ENJOY and APPRECIATE almost every moment with my children. Not that I wasn't doing this before... I was, but not nearly as much. Everything was just so stressful, and that has changed. In a big way. Am I certain why? Nope. Do I care? Nope. Well, maybe-sorta, so I can keep doing it. :) It brings tears to my eyes just thinking about it. I'm watching my little girl grow up before my eyes. She is being so helpful and sweet with her little brother, and it's been amazing to watch him grow up before my eyes as well. He is talking so much better, and it just melts my heart when he says new words in his sweet way. We've been having fun JUST BEING TOGETHER... playing, wrestling, talking, laughing, learning, singing, pretending, etc. Yes, there are still issues and lots of work to be done... but even my husband will tell you just how different the mood of the whole family is, and life just feels a bit easier. The diet sucks for various reasons, but it's not as bad as I thought it was going to be. I do have big concerns for the school-year coming up... but more about that later, or in another post.

There have been some other changes around here as well. I bagged the TSS idea, at least for now (and let me tell you, my daughter DID NOT take this news well. Big ol' angry, emotional outburst... hence there still being issues and work to be done). It was a complete waste of time. For us, anyway. Let me start by saying that the BHRS agency we chose has been WONDERFUL to us. The county director of this particular agency is FABULOUS, and to say that she has gone above and beyond what she has needed to do for us would be an enormous understatement. Our BSC is also really great, and I feel that her work with us has been the most beneficial. The TSS we were assigned was a really nice girl, and I do feel she was knowledgeable, and this is really nothing against her. It was just becoming TOO MUCH. I received some advice from a very dear friend as this was all starting for us, and she told me the following: "DO NOT feel the pressure/guilt to put your child in more therapies or over-frequent therapies than you can handle.  It's not good for anyone, and a lot of times, unnecessary.  I know you have the "mom" guilt to do ANYTHING you can to help the kids, and I can completely relate to that--you always are going to feel like you should be doing more.  BUT, that is not good for you, and if you are so stressed and pulled in too many directions, then you can't do anything well, including things for yourself to make you a happy mom, happy wife, happy person, etc...  I think this is true with ANY mom, but I think its more pronounced and important in moms with kids that need a little more." I reread this today and I feel even better about this decision. Our schedule was becoming CRAZY, and I seriously couldn't imagine how it was going to be once school started. Here was our SUMMER schedule:
Mondays- Speech therapy for our son- 1 hour
Tuesdays- Little Gym Camp for our daughter- 3 hours; TSS- 2.5 hours
Wednesdays- School for both- 5 hours
Thursdays- Our one open day, though very rarely open :)
Fridays- Occupational Therapy for our daughter- 30 min; TSS- 2.5 hours, Outpatient counseling- 1 hour

Add into that BSC meetings every other week, several different appointments, evaluations, etc... and things were getting a little crazy. With school coming up, this is how things would be looking:
Mondays- School for both- 2.5 hours, Speech therapy for our son- 1 hour, TSS- 3 hours
Tuesdays- School for our daughter- 2.5 hours; Gymnastics for our daughter (which she LOVES and I will not take away)- 1 hour, TSS- 2.5 hours
Wednesdays- School for both- 5.5 hours
Thursdays- School for our daughter- 2.5 hours, TSS- 2.5 hours
Fridays- OT- 30 min; Outpatient counseling- 1 hour
Oh yeah, and add in the very necessary exercises prescribed by her chiropractor to address her sensory needs, as well as the sensory diet and therapeutic listening prescribed by her OT, both of which I feel are extremely important.

Seriously... when was my kid supposed to have time to JUST BE A KID? I had to take something out, and honestly, TSS was just doing nothing for us. If you don't know what TSS is, it stands for Therapeutic Staff Support, which is someone with a bachelor's degree in a human service field. They typically are right out of college, in their early 20s, have no children of their own or any kind of experience, and this is often their first job. They are paid very little, and really don't have much training. I say this from experience, because believe it or not, I actually did TSS work at one time. The job sucks. And there is very high turnover because of it. There are some really great ones out there, but they are few and far between. We really liked the one we were assigned, but it just wasn't working out. She tried, but it was becoming very stressful for me, as our daughter wasn't responding very well, and things were actually worse when she was here. Umm... yeah, that is the last thing I need. Now, if she ends up needing one in school... which I hope and pray she doesn't... but if she does, then that's another story. Honestly, that was the only time as a TSS that I actually felt that I was providing a valuable service. So... that's that... for now.

Lots more to say that will have to wait for another post(s), plus even I'm losing interest at the moment. :) Thoughts on vaccines, biomed, the upcoming school year, GFCF diet, trying to balance being a mother, wife, and woman... lots of thoughts spinning through my head. For now I will say this... there are so many lessons I have been taught over the last several years,  one of the biggest I feel is to never pass judgment. We've all done it, and I have learned time and again to be careful what you think, be careful what you say, because you just never know until you are walking in that person's shoes. I am no better because I am trying biomed. I am no better because I am trying a special diet. I am no better than the mother who chose conventional medicine for her child, because as I've said before, if medication had worked for my daughter, I can guarantee you she would be on it, and on it for a long time. Really, we mothers are all in this together, and we need to remember that. I don't want to be judged by those who believe biomed to be a crock- i.e. alot of medical doctors and people in the conventional medical field, and I would never judge them if they were to choose to not pursue "alternative" therapies for their child. We need to support one another, not judge one another. I saw this the other day, and it spoke volumes to me...

Perplexed

That's how I feel today. I really can't seem to determine if there's a rhyme or reason to any of this. My big girl was doing SO WELL. Like, REALLY well, for a few weeks. Now, the increased anxiety was there (and still is), which sucks, but behaviorally... it was *almost* like a totally different kid. There were moments, sure... but she came out of them relatively quickly, and was just listening so much better. The impulsivity and hyperactivity seemed to be so much more under control.  Then... last Thursday night, she had a HORRIBLE night's sleep. She hasn't done this in a while, but she woke up around 3 a.m. and just COULD NOT fall back asleep. When she gets like that, she gets incredibly frustrated and upset, and she just cried and cried... screamed and kicked... she was just so angry. I did give her a little more "sleepy medicine," (melatonin) around 4 a.m. Apparently it wasn't enough to get her back to sleep, but was enough to make her feel just tired enough (on top of the lack of sleep) to be even more frustrated and angry. Finally around 5 a.m. I couldn't take it anymore, and she and I went downstairs and watched some TV, hoping that maybe she would fall asleep on the couch (she didn't). That is the day the behaviors started to escalate again. Friday was a horrible day behaviorally. She wasn't exactly out of control, but it was a pretty tough day. We were very proud of how she behaved on Saturday at the fair- she was such a big girl. We had such a nice time as a family... until we let her have that dreaded snow cone. Poor thing couldn't have any other treats there, so I thought.... ok, she can have a snow cone. Well, I should have limited the flavor choices, for one (no red dye ever again!!). For two, I should have told them to put on like 1/2 - 1/4 of the amount of liquid crack syrup they usually put on. HOLY SHIT. I have never seen a more obvious reaction in my life. Within 30 minutes of consuming that... thing... she turned into a crazy person. I am exaggerating a tiny bit, but not that much, really. I don't think it's all the snow cone's fault. I am blaming Saturday's post-snow cone behavior on it, but that's it. Everything else... I don't know what to make of it. I am truly perplexed. She's been off and on again... good hours and bad, good days and bad. GFCF is going pretty well... no huge dietary infractions.

Speaking of dietary infractions... I am feeling a little frustrated with this whole thing. I am not liking the answers I am receiving to the questions I am asking. I am basically being told by other parents that this certainly has to be 100%- all or nothing. I just don't understand. I need to do more research into what exactly happens in the body, but it's my understanding that PERHAPS she may not be able to digest certain foods properly- in this case we are removing gluten and casein to see if there's an improvement. What apparently happens- maybe in her case, maybe not, but certainly in some other children's cases- is that these undigested food particles/proteins then can enter the bloodstream and somehow are turned into toxins and actually morphine-like chemicals?? I don't know, something like that. So these morphine-like chemicals can cause all sorts of issues. So here's my thinking.... if you have 99% less gluten and casein than you were consuming before... wouldn't there be 99% less of the toxins in your body than were there before??  So WHY does it have to be all or nothing? I ask this because I am doing the best I can- but as I've said before, I am not Superwoman, and my poor kid is FOUR years old. Today, for instance, I received a call from her Little Gym teacher during summer camp, that she was eating goldfish crackers off of the floor and they didn't know what to do. I talked to her about this when I picked her up, and she said "I had my pretzels, Mommy... but I just REALLY wanted some goldfish crackers like the other kids." What am I supposed to do with that?? I can't be with her 24/7- and she has self-regulation difficulties as it is, plus she is FOUR- how can I expect her to be perfect all the time? I can't. We are doing the best we can. So I'm getting all sorts of advice about how to enforce it... but if you don't know my kid... let me tell you, if she wants something, SHE IS GOING TO FIND A WAY. So I'm frustrated. If this has to be all or nothing... well, then it's going to have to be nothing. That's how I feel today. I'm not stopping... I just want someone to tell me that all of this is NOT for nothing. That it's GOING to help, even if she eats a few goldfish crackers off the floor (gross, but whatever).

I also feel proud today. So proud of how well my sweet girl has been doing. So we've had a little setback and we don't know why. All summer she has been going to Little Gym camp- and this is the first day they have said to me, (today was her last day) "She had a rough day." So guess what?? That is THIRTEEN good days, and ONE rough day. I'll take it. :)

Update

Whew! So much going on lately, I'm not sure where to start. First, I think our family is finally on the road to recovery after this recent bout with a lovely (what the doctor believes to be) summer adenovirus. Each person developed symptoms 7 days after the last, and it seemed to affect all of us differently. The kids had high fevers, my son for three days, my daughter for five, and hers got up to almost 106! It was crazy. You know what I had, and my husband basically had the same thing I did, though his fever and sore throat were a little worse and lasted a little longer. Oh, well... I will still take that over a stomach virus any day (of which we had FOUR this past year)!!!

This past Monday, my daughter had a minor outpatient surgery to remove a three year-old tube from one of her ears. She had gotten tubes in both ears when she was 18 months-old due to recurrent ear infections/lack of drainage, and they typically will come out on their own in 12-18 months. One of hers came out after about 2 or 2 1/2 years, but this one just wasn't budging. When the doctor got in there, he found the tube to be completely non-functioning, filled with inflammatory tissue and "weeping" (gross). He removed it, patched the hole in her eardrum, then cleaned out the other ear, which was filled with impacted ear wax (runs on Daddy's side of the family). Anyway, not complaining, because her tubes served her very well. It was the right decision for us, hands down. My poor kid had a terrible several months with her ears after her first birthday... it got so bad that she ended up needing a series of Rocephin injections (nasty, but necessary stuff at that point). What I DO regret, however, is that I did not have her on a regular probiotic at that point. I often wonder if I had... would anything be different now? So many children like her have had ear tubes, infections, and/or other illnesses that required multiple antibiotics. This kills the good bacteria in your body, and can lead to other problems... diarrhea, yeast infections, etc... but multiple rounds of antibiotics without probiotic support can cause even more problems... read here for a basic idea. Both of my kids are now on daily probiotics- all the time, whether they are on antibiotics, or not. My daughter chews hers, and I crush it for my son and put it in his juice along with his multi-vitamin. If you do nothing else, put your kids on a good probiotic when they are on antibiotics... here is what we use: Klaire Ther-Biotic.

Last weekend was a total bust for the GFCF diet. I was so poorly planned... totally my fault. I was not feeling well, plus everything we did was very last-minute! Friday night was a preschool classmate's birthday party, (that I had just found out about that day, due to our address change) so I told my husband to just let her have whatever was there. She had a couple of bites of pizza, two small cookies, and a bite or two of cake. It could have been alot worse- she was way more interested in swimming, going down the big slides, and playing with her friends! Saturday, I sent the kids (again... last-minute) to Pap-Pap's family reunion with Daddy. We had been sick, I was feeling especially crappy, and I just couldn't deal. So she ate a bunch of stuff she shouldn't have had. We got right back on the horse on Sunday, which is all we can do... and even going to a baby shower, we did it! Woo hoo! I think that was really our first event to which I brought some of our own things and we were successful! I was lucky they had some plain fresh fruit and plain raw veggies (that Gaga made... THANKS, Gaga!!). I brought along some hummus for dipping her veggies and corn chips, as well as some cupcakes. Now, Monday... the day of her surgery, it was a bit of a traumatic day, so afterwards, I let her have what she wanted. She had half of a bacon, egg, and cheese sandwich from Starbucks, as well as half of a doughnut. Oh, well. But that was it. She had just had anesthesia and surgery, for goodness sake- I just wanted her to eat, and well... she just hasn't been eating that great (very much) since starting this diet, and especially while she was so sick, (she has lost 1.5 pounds :( ) so guess what... I didn't care at that moment. Again, right back on the horse for the rest of the day and ever since.

On that same note, we have noticed some changes. Whether these changes are related to going GFCF, or pure coincidence... we're not sure, yet. We really won't know until possibly doing food challenges after a few months. Whether these changes are actually positive changes... well, I'm undecided. To keep it very short... behaviors that seem to have lessened: frequency and intensity of mean, aggressive, outburst-like behavior. What seems to have taken the place of that: increased anxiety, fear, and perseveration about certain things. Honestly, almost OCD-like... there are certain questions she has to ask me over and over (and over and over and over) again, even if I keep giving her the same answer, and she KNOWS I'm going to keep giving her the same answer. It's really hard, if I'm being honest. It can be difficult to maintain a patience level that she needs from me. But I'm trying. I can do the right thing the first 100 times, then that 101st time, I lose my patience, which is obviously counter-productive. Daddy is doing a better job with this than I am. So... things are changing. What is causing these changes- who knows? Her symptoms and manifestation of underlying issues could just be changing. Hard to say.

And the biggest thing of all this week... her hair. :) She and I have been talking for a couple of months now about whether she wanted to cut her hair short, or not, and if so... what did she want to do with it, since there would be so much of it? I talked to her about donating it and what that meant, who would need it and use it, etc. Some days she was all for it, some days not. Well, on Monday, she finally decided she wanted it cut, and she definitely wanted to donate it! We found out about Pantene Beautiful Lengths from my sister-in-law, and for a couple of reasons decided on that vs. Locks of Love. Two WONDERFUL organizations... this was just the right choice for us. They partner with the American Cancer Society, and my daughter donated 8 inches of her hair in memory of her Great-Uncle Alex, whose loss to cancer devastated all of us over 5 months ago. I know he would be so proud, and happy that her beautiful hair would be going to someone affected by cancer and chemotherapy. She said, "Uncle Alex can be the angel who decides where my hair will go." Amazing.

Motherhood... the gift that keeps on giving

Today can suck it.

First, this is a lovely gift I received from my daughter:

Apparently my eyeball caught her virus from last week. Virus- you can suck it, too.

Next, the cookie fiasco. Let me start this by saying I LOVE my kids' preschool, I really do. This is also Vacation Bible School week at their preschool, and a sister church offered to do VBS for them, since they recently went through a transition and it was just too much for them to organize at this point. So the preschool director wasn't really in charge of what was going on, but was relaying information to me to the best of her ability regarding an activity they were doing involving cookies. I call an awesome local natural foods store to make me a big, fish-shaped, GFCF sugar cookie. She tells me she will make me a vegan one. OK, great. I hear from the preschool director... they actually need 3 cookies, one with a hole in it (long story, Jonah and the Whale, Jonah is going to be a gummy bear in the center of this giant cookie sandwich). Bakery is closed for the day. I leave a message. Fast forward to this morning... no one is picking up the phone at said natural foods store. They answer at 9 a.m. when I am in the car, on my way (oh yeah, and school starts at 9, by the way). She made me another fish-shaped cookie with a hole in it, but ran out of vegan dough to make the third cookie. She does have other dough that is GFCF but it has egg in it. No problem with egg, perfect- make me another cookie. She said 6 minutes. I get there in 7. I wait 10, maybe 15 minutes, after I get there. Cookie's done- yay! We're on our way to school- already 40 minutes late. Oh, did I mention my son's speech therapist is there waiting for us, too? We get to school, I throw my son's stuff in his classroom and rush to my daughter's cookie activity with her. We had already missed the whole story about Jonah and the Whale. The class had just finished eating their damn cookies. Are you freaking kidding me? So while her class stands there watching us, she and I hurry up and throw some icing on her cookies, she's crying she doesn't want me to leave, snot running down her face, takes 2 bites of her cookie, then - "Mommy, will you save this for me for home"?  

Yep, today can suck it. Well, the morning can, anyway. Now I have 2 very rare hours to myself- woo hoo! I was planning to get a pedi, head to Med Express for someone to look at my eyeball, and make a grocery store run. I think I'm just going to put my daughter's eyedrops in my eye and read a magazine instead. 

*Update: Kicking back with 2 hours to myself did not happen. Instead, realized I had a fever and went to Med Express. 3 prescriptions later, then time to go get the kiddos! :)

Week 2

7 days with NOT ONE SINGLE INFRACTION!!!! Yeah!!! I seriously can't even believe it!! I lucked out because she was ok with having different pretzels than the other kids at Little Gym, and I was planning to provide snack for her preschool class, but my big girl ended up getting sick on Tuesday, and she was sooooo sick the rest of the week. :( It was seriously so horrible. I have never seen her like this. Her little brother had what we are assuming is the same virus last week, but he had 3 days of a fever and was done. She was 4-5 days, and her fever got REALLY high at times... she was almost to 106 at one point, at which I got her in the tub immediately, finally convinced her to take some ibuprofen, and thank God it came down. She had gagged on her medicine and thrown-up a couple of days before this, so it was a big struggle getting her to take any more medicine after that, but eventually I was able to convince her when she really needed it. If you could have seen this poor girl, oh my gosh, it was enough to make you cry. My sweet girl who barely sits still and bounces around all day, needs melatonin to go to sleep at night, etc... she would barely move for HOURS on end, and fell asleep on the couch during the day THREE different times over the course of the week. She was just so miserable. I can't tell you the relief I felt when she woke up on Sunday morning fever-free! I think the dr. was even starting to worry a little, as she called first thing on Sunday morning to check on her.

So anyway, things are back to normal around here. One thing I want to clarify regarding a previous post... I know I said this diet can be a giant pain in the ass... and it CAN be... events, parties, pretty much anywhere that someone else is having something she can't have. And yes, if I'm being completely honest, I kinda-sorta hope she doesn't have intolerances/allergies to gluten and casein, because it can be such a giant pain in the ass... but I also kinda-sorta hope it's that simple. I just don't think it is. I have seen ZERO withdrawal and ZERO changes in her behavior. Nothing. But... I know it can sometimes be a while. Doc wants us to give it a couple of months, so we will. I am VERY interested in seeing what test results come back as far as vitamin and mineral deficiencies, other food allergies, etc. I know several people who have seen great results with supplements and giving the body what it is lacking, or fixing what is off-balance, so I'm anxious to get to that part.

As far as the rest of the family, we are not exactly GFCF. For the most part, I would say we are, but we are not being strict with ourselves or our son. We don't eat anything in front of her that she can't have, I am trying to make all of our meals GFCF, but if my husband grabs take-out one night for us after the kids go to bed, or if our son is at his grandparents' house without our daughter, for instance, we are not forcing it. It's just becoming too hard, and what's important right now is that SHE is GFCF. That's the way that I'm looking at it right now. I'm afraid if it becomes too difficult that I will bail, and right now I can manage it this way, so I think that is what is in everyone's best interest. The goal is to see if GFCF works for our daughter, so that is what I'm focusing on. I'm figuring out ways to try to make her favorite things, and I have to say- it's not always working. The pizza I made yesterday from scratch... well, not totally from scratch, as I did use a brand of GFCF pizza crust mix... didn't turn out great. It was just ok. Our son LOVED it, or maybe he was just really hungry. My husband and I ate it... our daughter had one or two bites. The substitute products just don't taste as good, period. And that's fine for, and pretty easily tolerated by an adult, but a 4 year-old... not so much. I'm having better luck just giving her the yummy fruits and veggies that she's always loved.

I will say one thing about this experience so far:  any future party or event that we have, I will always try to provide common allergen-free options- i.e. simple fruit salad, tossed salad without dressing, etc. And for any larger future events, I will always ask about special dietary needs. This has just been such an eye-opener for me. My mother-in-law has life-threatening food allergies, and my sister-in-law is gluten-intolerant, so you would think I would have already been more sensitive to this. I've tried, but I haven't always been great at it. I'm pretty sure I will be better at it now. Just like anything else, you don't really understand until you are put in someone else's shoes.

SPD

Sensory Processing Disorder, from my understanding, along with constitutionally poor self-regulation across all domains, accounts for the majority of my daughter's struggles. I have so much to learn! It's truly a fascinating topic... I just wish my child was not one who had to struggle with this. Here are ten fundamental facts about SPD, according to the Sensory Processing Disorder Foundation:

• Sensory Processing Disorder is a complex disorder of the brain that affects developing children and adults.
• Parent surveys, clinical assessments, and laboratory protocols exist to identify children with SPD.
• At least one in twenty people in the general population may be affected by SPD.
• In children who are gifted and those with ADHD, Autism, and fragile X syndrome, the prevalence of SPD is much higher than in the general population.
• Studies have found a significant difference between the physiology of children with SPD and children who are typically developing.
• Studies have found a significant difference between the physiology of children with SPD and children with ADHD.
• Sensory Processing Disorder has unique sensory symptoms that are not explained by other known disorders.
• Heredity may be one cause of the disorder.
• Laboratory studies suggest that the sympathetic and parasympathetic nervous systems are not functioning typically in children with SPD.
• Preliminary research data support decades of anecdotal evidence that occupational therapy is an effective intervention for treating the symptoms of SPD.

– from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD ) p. 249-250 by Lucy Jane Miller, PhD, OTR

I also recently read a wonderful article that gives me lots of hope for more understanding to hopefully be entering our public schools. Though this is in Canada, maybe it's a good sign?? SPD is often associated with autism, which it DOES  very often accompany autism, but if you have SPD, you don't always have autism! One in twenty kids has some sort of sensory processing issue! I also saw this quote today:

"A lot of children really need 10 minutes of every hour on sensory-based activities to self-regulate and soothe."
~Dr. Stanley Greenspan via Fun and Function

We've been struggling with implementing some parts of the prescribed sensory diet (brushing, Therapeutic Listening)... it turns into a power struggle and it's pretty much impossible to force my daughter to allow me to do her brushing or listen to her therapeutic cd for the 30 mins. that she's supposed to. I'm going to try a reward system for this to hopefully get her to the point where she realizes how much better it makes her feel, so she actually wants to do it!

On another note, GFCF is going well this week! This is Day 3 of week 2, and so far... no dietary infractions in Week 2!! Woo hooo!!! Now, I was told she should be having withdrawal symptoms, and she's not. So I'll be honest... I'm wondering if she even has true allergies to gluten and/or casein?? Shouldn't she be having pretty bad withdrawal? I expected it after a day or two with ZERO infractions, so I'm not sure what to think. Maybe I'm just hoping... so we don't have to keep doing this? Although... I'm afraid of when we get the food allergies test back, to see what else we may need to restrict... ugh.

Thanks for keeping us in your thoughts and prayers!!

Week 1

Well, all in all, I think we did ok. For our first week, for an extremely strong-willed 4 year-old, for having activities where I am not there with her, for Mommy still having A LOT to learn, for traveling in the car, and for going to the lake with lots of goodies around... we actually did pretty darn well, if I do say so myself! (In MY mind, but I guess in actuality we kind of sucked). There was one infraction each on six of the seven days. Ugh. Three were totally my fault, because I thought McD's fries and hashbrowns were GFCF, but alas, it seems they're not. Note to self: check and double-check what you read online! There was some snack-sharing that occurred at her Little Gym summer camp, birthday cupcakes were brought in to school (had I been aware, I would have sent a special one for her), and a family member taking care of her one day forgot about the diet and gave her a little piece of string cheese. So this is going to take some getting used to, and is going to be an adjustment for everyone involved. I have to say, though... I'm pretty happy with the way the first week went, as it went better than I thought it would. I am luckier than most, because my daughter is already a really good eater- LOVES her fruits and veggies, salads, loves healthy snacks... totally accepted having hummus to dip her carrots into instead of ranch. I know moms who have done this, and all that their child would eat before starting the diet were chicken nuggets, mac and cheese, etc... so we certainly are in a much better position to start than many. That being said... it's still pretty freakin' hard! Honestly, home is really not an issue at all. She eats healthy, I try to cook healthy, she simply hasn't been offered anything she can't have, she just can't see it if it's even here, and around her, we all try to eat GFCF. She has asked for things, and has been told that we don't have it, etc. That she is accepting. What I know she will not accept is when she is told she CAN'T have something... so I'm staying away from that word as much as is humanly possible. I have to give a HUGE thank-you to her Gaga (my Momma) who took care of her all day on Friday while I snuggled with and tended to my sick little boy. She took the new diet very seriously, which I SO appreciated, even when I told her to not worry about it because I was so overwhelmed and unprepared that day. That was one of her best days!! Also to her Mimi, who tried to keep all of the snacks hidden, which was super-hard to do with a little cottage at the lake and having to feed lots of people! It means so much that the most important people in our lives are taking this so seriously.

What I have learned this week is that in one way, this is going to be easier than I thought, and in another, it's going to be harder than I thought for an active kid like mine, who is out of the house a lot without Mommy. Her doctor had suggested "keeping her home" for a couple of months to see if the diet would work for her, and I almost laughed out loud. For one, I don't know what I will do if I don't get little breaks. She suggested getting a babysitter to come to the house and I go out. Ha! What she doesn't get is that my daughter will go CRAZY! She gets stir-crazy even in our relatively spacious house. She needs LOTS of structured activity, and I do the best I can, but the fact is that I also have another child at home who needs different things, and needs me in different ways. It is impossible to give my daughter all that she needs, all on my own at home. So we're just going to have to do the best that we can. I imagine it will take us a few weeks to get into a little routine, and hopefully to have my daughter, and all of us, adjust to these changes.

So far, Week 2, Day 1 is going well! Let's hope for zero dietary infractions this week!! :)

Day 1

So we got through Day 1 of GFCF. I honestly didn't know if we would. Now, Mommy did have some creamer in her coffee (bad Mommy!) because almond milk tasted like crap in it and I didn't think to pick up any non-dairy at the store, and Daddy did have a piece of bread with his salad at lunch... but the kids did pretty well. If I'm being 100% honest, though... OMG I want to give up already.  Some things are just a bigger pain in the ass, and the last thing I need is a bigger pain in the ass. Truly, my daughter already eats pretty well and loves her fruits and veggies, so we can get away with it at home. We have yet to attempt having a "different" snack than the other kids at camp and school, so we shall find out today and tomorrow. My plan is to have them offer and encourage it, but not force it if there is a meltdown, because that will just cause more problems than it is worth with me not around to help. I know it's cheating, and I know it's making a dietary infraction and probably screwing the whole damn thing up, but I don't know a better way to handle it for now. Same with this weekend at the lake. All the kids my girl will play with all day will probably go get ice cream after dinner... how do I tell my sweet babe that she can't have any? She LOVES ice cream. We tried coconut milk ice cream last night and she wasn't thrilled. I HAVE to have a good substitute on-hand to replace these things with, and that just isn't gonna cut it. So is this all going to be worth it if there are infractions sometimes? I don't know.

And I'm worried about my 2 year-old son. He's a picky eater as it is... I just don't know how I'm going to do this with him. I'm not pushing it with him outside of the home or when Sissy isn't here... but when we're all home together, I can't very well give him his favorite waffles or mac and cheese and not give Sissy any, (if she wants it) you know? But I also can't restrict his diet so much that he won't eat!!!! He's a baby.  So... I'm worried. But we'll keep plugging away and taking it day by day... that's all we can do.