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.

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. :)