Thoughts on Diet Change

[saidie10]

I am thinking of making a change to the boys diet. Thinking of starting with eliminating Gluten for a trial period. Could this help with behavior possibly or am I reaching? I am willing to try anything at this point!

[Stephanie2]

Didn't you just do IVIG? If you try the gluten/casein free diet at this point you won't know what worked! I'm not discouraging you by any means (both of my boys have been on the diet for 1.5 years), but there was so much going on when I started it that I honestly don't know if it is working!! I just keep doing it at the advice of their DAN doctor. (I do think that it helped ds2 overcome early signs of autism, though)

[pixiesmommy]

I think it is ABSOLUTELY worth it to try. This may not be the popular opinion, but I'm going to say it anyway- it doesn't matter WHAT works, as long as something works. We had IVIG a year ago to the date today. Soon after IVIG, we started going to a Nutritional Response Therapist and Pixie began to improve. This was after we saw a lot of the "turning of the pages" start to wane. I don't know if IVIG or the NRT is responsible for the majority of her healing during that time. Also, a month or so later after seeing the NRT (this would have been in Feb) we started our diet of gluten-free, sugar-free, etc. and she improved even MORE. Would she have improved without these measures and just with the IVIG alone? Possibly.

 

I will stop at NOTHING to help her. I love to chime in and be part of the informal studies, and even part of the ones like the Cunningham that are more formal, but it doesn't matter to me in the end what works- just that something does and that we can all have reasonably functional lives. The diet change we did was for the entire family and we have all seen such positive significant results that I cannot discount that, and we would not go back to eating gluten or sugar for anything. It has healed my husband's sleep apnea, given me more energy and stopped my hair from falling out, cleared up some skin conditions, helped heal my youngest daughter's cavities... the list goes on and on and on.

 

I have a child that last year could not tie her shoes, ride a bike, use a broom to sweep the floor, put her own shirt on half the time, go to school, and would bite and kick me all day long, sometimes screaming and raging for DAYS on end. I can't tell you the magical combo of what helped, but now I have a child- one short year later!!!- who has friends over for sleepovers and sometimes has 4 or 5 friends in the playroom after she attends school for FULL days and makes A's on her tests. She can tie her shoes, rides her bike all day if I will let her, read the entire Harry Potter series over the summer and had the attention and motivation to do so, and hasn't been aggressive in many many months. She's so UNafraid of the animals she used to be terrified of that she goes to horse therapy once a week and BEGS for more.

 

Maybe it was 100% IVIG in her case, maybe it was just growing up a little bit, maybe it was the tilt of the earth, but whatever it was, I will be able to say at the end of each day that I did absolutely EVERYTHING I could think of to help her. If there is ANYTHING you can do that MIGHT help your child, why not do it? Within reason, of course, considering money and harm to the child. But going gluten-free is not going to give you a bad result. It is not going to UNDO anything that is working in your favor.

 

DO IT!!

 

www.chickiepea.wordpress.com to see our journey with food

[matis_mom]

I think it is ABSOLUTELY worth it to try. This may not be the popular opinion, but I'm going to say it anyway- it doesn't matter WHAT works, as long as something works. We had IVIG a year ago to the date today. Soon after IVIG, we started going to a Nutritional Response Therapist and Pixie began to improve. This was after we saw a lot of the "turning of the pages" start to wane. I don't know if IVIG or the NRT is responsible for the majority of her healing during that time. Also, a month or so later after seeing the NRT (this would have been in Feb) we started our diet of gluten-free, sugar-free, etc. and she improved even MORE. Would she have improved without these measures and just with the IVIG alone? Possibly.

 

I will stop at NOTHING to help her. I love to chime in and be part of the informal studies, and even part of the ones like the Cunningham that are more formal, but it doesn't matter to me in the end what works- just that something does and that we can all have reasonably functional lives. The diet change we did was for the entire family and we have all seen such positive significant results that I cannot discount that, and we would not go back to eating gluten or sugar for anything. It has healed my husband's sleep apnea, given me more energy and stopped my hair from falling out, cleared up some skin conditions, helped heal my youngest daughter's cavities... the list goes on and on and on.

 

I have a child that last year could not tie her shoes, ride a bike, use a broom to sweep the floor, put her own shirt on half the time, go to school, and would bite and kick me all day long, sometimes screaming and raging for DAYS on end. I can't tell you the magical combo of what helped, but now I have a child- one short year later!!!- who has friends over for sleepovers and sometimes has 4 or 5 friends in the playroom after she attends school for FULL days and makes A's on her tests. She can tie her shoes, rides her bike all day if I will let her, read the entire Harry Potter series over the summer and had the attention and motivation to do so, and hasn't been aggressive in many many months. She's so UNafraid of the animals she used to be terrified of that she goes to horse therapy once a week and BEGS for more.

 

Maybe it was 100% IVIG in her case, maybe it was just growing up a little bit, maybe it was the tilt of the earth, but whatever it was, I will be able to say at the end of each day that I did absolutely EVERYTHING I could think of to help her. If there is ANYTHING you can do that MIGHT help your child, why not do it? Within reason, of course, considering money and harm to the child. But going gluten-free is not going to give you a bad result. It is not going to UNDO anything that is working in your favor.

 

DO IT!!

 

www.chickiepea.wordpress.com to see our journey with food

Wow Pixiesmommy! It is so refreshing to hear how well your family is doing!

I started ds on the GAPS diet (like Specific Carbohydrate Diet, but introduced very slowly). I have not seen any dramatic changes yet, but he does seem to have more energy. The interesting thing is that he is all on board with it, even though it's quiet tough (no sugar, no grains whatsoever, no potatoes). He's been on chicken, beef, eggs, stewed pears or apples, ripe bananas, broccoli, zucchini, or green beans for a week now. It's funny he gets all excited about what he can have next. He is actually asking for zucchini! We make "pasta" by slicing it with a peeler and frying in it butter. I am not doing the whole family right now because it would be too overwhelming for me, but I try as much as possible to cook healthy for everyone. Your post gives me a boost and the conviction it is worth trying, for everyone, especially since PANDAS seems to run in families, I'll do whatever I can to keep my other kids healthy.

[AmbersMommy]

I am thinking of making a change to the boys diet. Thinking of starting with eliminating Gluten for a trial period. Could this help with behavior possibly or am I reaching? I am willing to try anything at this point!

 

Hi! I did the gluten free diet with my daughter for a year, and it helped her with some GI issues. Then, overnight she started hallucinating and was diagnosed with PANDAS shortly after that. Now we know she has Lyme as well. I changed her diet from the gluten free diet to the specific carbohydrate diet. I am not sure if the diet is what is helping her, or the antibiotics she is on, but I have a hunch it is both. I think anything that won't hurt is worth trying. My daughter gave me absolultely no trouble in putting her on the diet. I have an awesome recipe for raisin bread if you would like it!! We finish off a loaf in 2-3 days!!! Oh, I went on the specific carbohydrate diet with my daughter because I thought it would make it easier on her. My other daughter and my husband aren't strictly on it.