Monday, August 12, 2013

Working to heal Bear

As I mentioned in my last post, Bear has been diagnosed with ADHD. It has been a roller coaster ride to say the least.

We had him on Adderall xr for about a month and a half. He did better in school, but I hated how he seemed to lose his personality when he was on it. When I took him to his million appointments, including behavioral therapy, once every two weeks, appointments with his pediatrician, appointments with pediatric development, appointments at his school, he would just sit there. Gone was his happy and curious personality. I would ask him a question and he would respond with a few words and then just sit there again. I hated it. His behavioral therapist suggested that a non-stimulant would be a better match for Bear, but Adderall xr is a capsule, that can be opened, and mixed with apple sauce, and that is the only way I could get Bear to take it. He has not mastered swallowing pills whole yet and the non-stimulant, the pediatric development doctor offered us to try, could not be opened.

When he got home from school, the Adderall xr would be wearing off, and he would be lethargic. Also, he didn't eat lunch. At the end of the school year, I was sending half of a sandwich and one bite would be missing when it came home. He went from eating a cup of yogurt, an entire sandwich, a bottle of milk, some of his fruit, and a cookie, to literally taking one bite of his sandwich. Everything else, including the cookie, came back home.

He also started having trouble sleeping at night. Adderall is a stimulant after all and well, it kept him up. So, the doctor said we could give him melatonin to help him sleep. She also put him on an allergy medicine that is sometimes used to increase appetite. Then he started waking up crying with dry mouth.

I was not happy with the Adderall and the other drugs, but it did help at school, so what could I do?

Luckily, I have a friend who sent me some links, one of which was for a book called, Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies, by Doctor Kenneth Bock. I am so grateful to this friend. She will never know how much she changed our lives. Especially Bear's.

One of the most important changes to make for these kids, according to Dr. Bock, is to put them on a casein (an ingredient found in dairy) and gluten free diet. This helps about 60 percent of them. I figured, why not give it a try? What do I have to lose? Maybe, Adderall? I sure hope so.

The day after school got out, we started Bear on a dairy free diet. Within a day and a half, we saw changes for the better. We were not surprised, because Dr. Bock said the changes, when you quit dairy, often occur rather quickly, within 24-48 hours. Bear stopped zoning out after he ate. Gone were his trips to La La Land, we had become so accustom to. In the past, when I asked Bear to go get his shoes, he would not respond. In fact, I would have to remind him over, and over, and over. Sometimes, he would actually go get his shoes, but then not know what to do with them. Just getting his shoes on in the morning, before school, was difficult for Bear. A day and a half after Bear quit dairy, I said to Bear, "You need to get your shoes on". I walked into the living room a few minutes later and said, "Go get your" and stopped as I realized, he had gone upstairs, put a pair of socks on, and then came back down, and had both shoes on. I was completely shocked. This had never happened before. He started saying, please and thank you. He held my hand. He gave me a hug when I put him to bed. He got along better with his cousins. He has less outbursts. He hasn't had a single night terror. He can help put toys away now, without standing in the middle of the mess, not knowing what to do. He stopped being constipated. He says, he feels better. All things for the better. All things new for Bear.

Three weeks after putting Bear on a dairy free diet, we put him on a gluten free diet too. According to Dr. Bock, it can take much longer to see the changes after stopping gluten. It can take three months for gluten to fully leave your system and the changes can be subtle.

Bear has been gluten free for almost a month. He says he feels better. Even better than he did, when he was just dairy free. The biggest change, we have seen in Bear, now that he is gluten free, is he has now gone almost an entire week without wetting the bed. Up until now, he wet the bed every single night. He in fact has only woken up dry twice in his entire 6+ years of life and that includes naps, until now. The changes have been really subtle, but I do think they are occurring.

I am telling Bear's story, because so often parents are told that the only things you can do for kids with ADHD, is put them on drugs, and behavioral therapy. Those were the options I was given. When I read Dr. Bock's book and asked Bear's pediatrician about having him tested for food allergies, she told me there was no sense poking and prodding my child. When my husband asked her about it at Bear's next appointment, and told her we were planning on putting him on a dairy free diet, she told my husband, not to get his hopes up, because Bear doesn't have the symptoms of allergies. I don't know if he does or not. I know he has always had trouble with constipation. Maybe he isn't waking up screaming from pain. Maybe his intestines are not bleeding. Maybe he does not have eczema, but obviously he has issues with dairy and gluten, we did not know about. Kids with ADHD and Autism are often sensitive to foods, rather than allergic, and this does not show up on a regular food allergy test. If they are tested, they need to be tested for IgG antibodies too. A regular test is looking for IgE antibodies. The most common sensitivities are casein, gluten, and soy. Corn is also another that can give them trouble. Even if you have a test for the IgG antibodies, you can get false positives though, because these kids often have leaky guts, and things that wouldn't normally show, if their guts weren't leaky, show up as a sensitivity. I read this information in The Kid-Friendly ADHD & Autism Cookbook, by Pamela J. Compart, MD and Dana Laake, RDH, MS, LDN. This book has great information, as well as recipes.

So, what is a parent supposed to do? Well, you can do what I am doing and just cut those things out and see what happens.

There is also something called the Feingold Diet. Back in the 1960s, Dr. Feingold found that kids are sometimes sensitive to salicylates. Salicylate occur naturally in fruits and vegetables (higher in fruits). They occur unnaturally in food flavorings, food dyes, preservatives, aspirin, and other over-the-counter drugs. I suspect, Bear is also sensitive to these. I have cut back on these foods, but I fear, based on his behavior after eating things like jelly toast, apple sauce, and strawberries, I am going to have to eventually cut out all salicylates too. He is on an all natural diet, so the only things left to cut are his beloved strawberries, apples, citrus, fruit juices, and jelly. You can find out more about the Feingold diet here, I have not purchased the program, so I cannot tell you if it works or not. I just cut back on some of the foods, that were listed as trouble foods, and have noticed Bear gets hyper when I let him have them. My friend said that she knows a mom who swears by the program though.

Right now, we are choosing not to put Bear back on Adderall when school starts. Instead, we sought out a MAPS (Medical Academy of Pediatric Special Needs) doctor, formally called DAN (Defeat Autism Now) doctor. You need to be careful when using an alternative medicine doctor, as our own doctor said, some of these guys are quacks, but we are confidant that the doctor we found is a good one. He is retired from the Army. He is a MD, and everything I have found out about him, via google, has been good. Also, our pediatrician has asked us to keep them in the loop and we plan to do so.

So, where are we at now? We are waiting for all of Bear's blood work to come back, and we meet with our MAPS doctor on August 29 to try to figure out how to help Bear.

Keep us in your prayers, that we can heal Bear. I am not anti-medicine at all, just so you know. I just want to try everything else, before he goes back on them. I am pro-anything that will help my child be successful, and I was honestly surprised that the casein and gluten free diet actually worked. I truly believed that we would be putting Bear back on Adderall xr in the fall, but for now, that is not going to happen. We are going to keep Bear on the casein and gluten free diet, keep seeing our MAPS doctor, and see how that turns out. I will let you know. Lord knows someone out there has an ADHD child and is looking for a direction to go. Well, here is another route, other than, or along with, medication, and behavioral therapy, that just might work for your child.