Shortness of Breath, Sleep Disturbance,

[Claire]

I can't find my old post on my own DAN doctor visits, so I have to start a new thread.

 

Pyroluria. I got my own Pyroluria tests back and it was negative. Direct Health Care showed an 8, while Biocenter showed a 4. Granted, these tests were not done at the same time, but it is still worth mentioning that it was 2x the level.

 

Sleep Disturbance

Zinc. I read Dr. Walsh's advice that zinc be taken at night. I have a known zinc deficiency. Anyway, I started this 4 days ago, and since I started, I have not had disturbed sleep for 3 nights running (I have been waking multiple times in the middle of the night for many many years). I know that zinc is associated with insomnia. I know people do magnesium, and I take this, but it never made a difference with me, so something else to try.

 

Gasping--shortness of breath.

Several people have commented on breathing tics. In my research with Pfeiffer clinic, I noticed that low folate and/or B12 can cause elevated amino acid homocysteine which can cause 'shortness of breath'. In case, Pfeiffer's tests for ASD typically include homocysteines. In case some of these presumed breathing tics may actually be this, so I wanted to point it out. Be careful that if you supplement with one, that you do both. And you can oversupplement with each. I would use a doctor, but consider 800 mcg folate and 100 mcg B12 for a week. He says overmethylated or undermethylated people (I forget which) must be careful with folate, so best to see a doctor. Folate is absorbed better if taken on its own.

 

The more I read, the more I would add zinc, B6, vitamin C and E and magnesium to an experimental routine--just don't megadose without doctor supervision.

 

Claire

[Guest bean]

Claire,

This may be off the topic but I believe reading your posts motivated me to find a DAN doctor and have my daughter tested for just about everything. I won't go into all the details as there are too many but her IGg results came back she is allergic to the only foods she likes to eat. She is allergic to, cheese, milk, wheat,soy, all citrus, safflower,eggs and casein. How have you all taken your children off the foods they so desire? My daughter is only 7 and I feel the stress of not eating what she likes is more damaging than the benefits. We will try for one month and see what happens but it just seems so complicated. Rice milk is the only dairy she can have but rice milk contains safflower another allergen. Many gluten and dairy free foods have soy, she can't have soy. It's a vicious cycle that leaves nothing for her to eat. She does not eat any red meat,only chicken. She does not eat vegetables but eats a lot of fruit. The change of diet along with all the supplements seems so overwhelming for a child and for me. Any suggestions would be greatly appreciated. Of course, my pediatrician and the other specialists she has seen all think it is nonsense but I am highly motivated to give it a try.Thanks.

By the way my daughters initial tic was a cough that has evolved into many cough/throat sounds and now has also become a breathing tic. It's like she is

hyperventilating or can't catch her breath.

[Claire]

Bean,

 

Good for you for taking this big step!

 

I really feel for you and your daughter about the foods. The same thing happened to my son. Apparently the gut issues often result in them developing allergies to the foods they eat most often.

 

My son's list (posted before, so not new): milk, wheat, peanuts, corn, eggs, almonds, bananas, apples, onions, pepper, sesame...and those are just the things he ate most often, there are 9 more.

 

The one good thing you have going is that your daughter can have corn (my son was sensitive to corn). You would be amazed that most of the wheat free (usually gluten free) products on the market have corn.

 

Dealing with the issue--'techniques'. We were worried about creating psychological problems by 'taking away all his childhood pleasures' so we worked hard at making this easy on him.

 

1. Have you told your daughter yet? If you haven't started, I recommend considering this approach: We shifted as many foods out as possible for two weeks before telling our son. That way, when we told him, we said "you can have all the foods you had last week" and it was easier on him, though I will never claim it was easy. When we ran out of milk we didn't replace it, so he broke the milk habit for several days before we told him. (Be sure and give a calcium/magnesium supplement since no milk).

2. I always told him it wasn't permanent. That in 4 months we would try rotating things in.

3. I did the identical food elimination with him. I thought it would be cruel to eat these things around him, given his personal make-up. That helped a lot.

4. I eliminated things from our cupboards so not to tempt him.

5. At school, if he had to turn down a wheat treat at school (cupcakes...), I gave him a replacement one at home.

6. For known events with treats (e.g. after sports games), I brought great alternative treats that he could have (e.g. Dole fruit popsicles...) and brought enough for other kids and just put them in with the rest of the things. That way he was no different from others there. Truly, the children grabbed the treats I brought first.

 

 

We saw the results within the first week. I was just hoping for cleared up excema, I really doubted it would impact anything else, in spite of what others said--it just didn't seem like it would make a difference for my son. I hope you are as lucky as we were. I would think by 2 weeks you should also. Later when we accidentally added milk in, we saw the change--so did he.

 

I don't know what your daughter loves, so I will tell you what my son eats.

 

first of all, here is a link on the gluten-free board on braintalk:

http://brain.hastypastry.net/forums/forumd...splay.php?f=141

There is a link someone posted with a link to all sorts of gluten-free recipes. Neither of our children has issues with gluten, but these are obviously also wheat-free recipes. Beware--lots of things have wheat, even teriyaki sauce as Chemar once pointed out.

 

 

FOOD ALTERNATIVES

I am listing mostly the fun, snacky foods (e.g. carbs!) that would replace the wheat.

 

1. Can your daughter have frozen yogurt? Some people with milk/casein issues can have yogurt. This is our 'ice cream' treat. If casein is an issue, usually butter is too. (My son only has milk issues, I have casein issues).

 

The store mixes save a lot of time--we bought and threw away many breads and wheat-free products ($$$) before finding good ones. Even his wheat eating friends like these:

 

2. Gluten-free pantry has a wonderful sandwich bread mix. I went out and bought a bread-maker. He loved the fresh baked bread (it has corn in it so we had to avoid it for months when we found out about his corn allergy). You can use it for bread, homemade pretzels, pizza crust (hmmm, tough with no cheese!), cinnamon rolls. Initially I allowed a bit more sugar to offset the change, then later reduced this.

 

3. There is a Kamut, yeast free bread he likes (me too), if yeast is an issue.

 

4. Pamela's pantry makes a terrific wheat free pancake mix. Whole foods sells an egg substitute, and we use a tablespoon of Gotein goat milk protein powder in 1 cup of water to substititute for the milk (should be okay for casein/milk problems).

 

5. Van's wheat free waffles.

 

6. Berry smoothies, with a little Gotein protein powder, fruit, water and stevia. Or just fresh berries with stevia--berries can be pricy though!

 

7. Xylitol gum as a 'dessert'

 

8. Corn chips, tacos (if she doesn't like beef, we used ground turkey.

 

9. Blue Diamond "Nut-thins" natural rice and nutmeal crackers. Much better than normal rice crackers.

 

10. Chicken/Turkey and rice soup instead of noodle soup.

 

11. I have yet to find a decent pasta, I don't even try.

 

12. The only citrus he eats anyway is grapefruit--we do berries and pears, since he can't have apple and banana.

 

13. He eats power bars with soy--you would have to see if they make them without it.

 

14. Corn and oat cereals (normal Cheerios has wheat). Whole foods carries a great healthier version of Fruit loops (nothing artificial) with no wheat. It can be easily eaten without milk.

 

15. Milk is tough. We experimented with soy milk, you could try rice milk.

 

16. Popcorn with light olive oil and sea salt. (I love it, we haven't used butter since I was a kid).

 

17. Pamela's pantry has unbelievable brownies. (You need that egg substitute from whole foods).

 

18. We made a nice zucchini bread (you could do banana) with no wheat.

 

19. We always dip our chicken in potato starch (from my friend who is a great cook--it holds in the moisture) and then our favorite seasonings, and fry it in oil (we use coconut oil based on Mercola). Same with small pieces of halibut for 'fish' and chips.

 

20. Healthy potato chips, french fries (no trans fats), baked potatoes, brown rice...

 

Someone put it well with mainstream doctors: If we didn't learn it in medical school, it must not be true". This won't work for everyone, but if done gently with the child, it is much less risky than drugs.

 

Also, my fingers are crossed that this MT promotion therapy is a solution for both the neurological issues and/or diet issues--I know it is too early to count chickens there though.

 

Please let us know if this makes a difference (or not). I sure hope it does. I think it did for Jennifer and Ronnas also. I hope that you will collect the data and over time start a thread, so that others can benefit as you go--what worked, what didn't. Part of this is us finding out what portion of us actually do find our kids have certain underlying conditions.

 

I actually thought the food elimination was the most obvious and immediate change after the CRT screen elimination/change from CRT monitors. Good luck moving forward. I will pray this will start you on the right path.

 

Claire

[Guest bean]

Claire,

Thank you so much for replying to me and all your suggestions. I'm sorry it took so long to respond it has been very hectic the past couple of weeks. I have seen some improvement with the diet change. Finding foods is still a challenge because no matter what I find there is one ingredient she can't have. I'm trying to be creative and my daughter is being forcrd to try new foods. Actually, she is being forced to eat healthy. Yes,yeast appears to be a problem. Although, getting her to take the Nystatin is a bigger problem. She also started an antibiotic for strep found in the stomach. Interseting because of her sudden onset of symptoms she was tested for PANDAS originally but everything was negative. I don't know if the strep in the stomach could be a trigger or not. Thanks again for your input.

bean

[Claire]

Why is taking Nystatin a problem? Is it a capsule? Our doctor gives it in liquid form and it tastes delicious.

 

I have been searching the internet for our family for power bars that are gluten-free and dairy-free. Some use almond butter, not soy. My son is allergic to it, but I don't think your daughter is. I will try them once a week, since he is supposed to rotate some things once a week now.

 

If she is taking antibiotics, our DAN doctor says to give a probiotic 2 hours after the antibiotics to replace the intestinal flora, especially if yeast is an issue. I suspect your daughter is doing this?

 

I am glad you are seeing some improvement. It is tough to replace the foods, we are still struggling ourselves after many months.

 

Claire

[Guest bean]

Claire,

The Nystatin was made by a compounding pharmacy and is dye free, preservative free, everything free and is really bitter. I tried it, it was awful. I got a sample of the tablet and I did get her to swallow. She is only 7 but very, very petite. I'm still waiting to here back from the doctor to get an RX for the tablet. Yes, she is taking a probiotic. We also suspect mercury and I will be doing a mercury challenge test as it did not show up in other testing. I have found an excellent protein bar which I believe has no almond. It has to be ordered through a healthcare practitioner but I'm sure you can get your doctor to order them. They were free of just about everything as my daughter could eat them and they tasted good. We ate both samples so I don't have the company name around. I have an order coming and I will get the name of the company for you.Thanks again for all your responses. It's so helpful when you feel like you are so alone in a such a helpless situation.

bean

[Guest bean]

Claire,

I just got my shipment of protein bars and almond butter is one of the ingredients so I don't think that works for you. The company is called Biogenisis Nutraceuticals if you want to check them out. They may have other products.I don't know. Also it is whey based which is ok for my daughter.She is casein sensitive but did not have a reaction to whey. I'm not sure how big of a problem whey is for most.

Sorry I couldn't help.

bean

[Claire]

Hi Bean

 

My son can have almond weekly, but the whey is not good. Thanks for letting me know.

 

Claire