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:

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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.

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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.