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Everything posted by Rachel

  1. I was looking back over my son's immune testing results from last year. My son has daily pain issues but his C4 serum level was at 20 and normal range is (15-59). I went on the MAYO Clinic to see what this test checks for and I learned that it assess disease activity in lupus, glomerulonephritis, rheumatoid arthritis and autoimmune hemolytic anemia. I know he is in a normal range but it is in the low range. I'm wondering if I should request this test to be reran. Are there other test that could shed some more light or should I just let this go? I really want to understand why my son is in dail
  2. My son is 14 and has been on Intuniv for 2 years. It took about 6 weeks before I saw improvement. My son started on a low dosage but this dosage had to be bumped up. It keeps his vocal tics under control. I would give it a few weeks. This medication regulates serotinon and dopamine levels.
  3. I just wanted to share this article. I am not promoting this lab and did not use this lab for testing. I have had a difficult time understanding why my son's symptoms are so different and yet these anti-neuroantibodies have shown up. The first time he had the Cunningham panel ran it could not be read as unlikly or likely. The marker was in the middle. My educated guess is that my son's body had accepted the antibodies as part of his body. The second time my son had this test was when he had a double ear infection. Both ears inner and outer, very painful, and his symptoms of tremors, vocal tic
  4. Hang in there. Is your son on any specific treatment plan? My son also got sick when he was 10 but his symptoms have come on gradually. He was also the straight A student and had no behavior problems either. When my son goes down with an infection, he is somewhat moody and irritable. From what research I have read the anti-neuro antibodies found in the brain will cause the symptoms you are describing. It sounds like you have found a very knowledgable doctor to get you on the right track. It does take time for healing and finding the right treatment. My son just started a treatment plan of
  5. I really did not understand all the symptoms of Rhumatic fever until I read these 2 research articles. My son has trouble with tremors and I now understand why voluntary momements can make it worse. The second article talks about the snips of inflammation. When I ran my son's 23 and me results the Livewello site these snips showed up as homozygous. My son will be having his 3rd LD IVIG treatment this next week. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002660/ http://www.annalspc.com/article.asp?issn=0974-2069;year=2011;volume=4;issue=1;spage=13;epage=21;aulast=Guilherme
  6. I gotta find the corndogs. They are too time consuming and messy to make. I saw fish sticks the other day and picked them up.
  7. Thanks so much for sharing this. I live in Oklahoma and this might explain why it has been harder to get a hospital room for IVIG treatment.
  8. My ds is in his teenage years. He's 14 and yesterday he had a endless appetitie. I suspect his body is trying to take another growth spurt and it does indeed look like he's getting taller. Can anyone suggest something that I could serve that would be more filling during these spells? I have been giving him peanut butter and that helps some. I know that the right fats are important and can make you feel full. I have also been experimenting with coconut oil.These spells last for about 2-3 days and than his appetite is back to normal. Any suggestions? I'll check out the gluten free oat flour
  9. The sparkspeople website has very easy gluten free recipes with calories counted, When in doubt about a product, check out the product website online. I started very simple with fresh fruits, veggies, and my George forman grill. Betty Crocker has a good brownie and cookie mixes that are gluten free. I use the gluten free noodles and make my own sauces. Progresso has gluten free chicken and wild rice soup and gluten free cream of mushroom soup that I use in recipes. For bread I have Rudies and made french toast sticks that were really good. KIng Author's flour website has gluten free recipes.
  10. I will ask about this. This brings major relief to my son when he has a croupy cough but he cannot stay on it for more than a week. I will do some research. I need to find out if dosage is regulated by weight.
  11. I'm glad you are seeing changes with the diet. My son has been gf/df for 3 weeks and I am not seeing any changes. However he has no food allergies or blood test that are positive for celiac or gluten sensitivity. I've been told and have read if this is the problem, then changes can be seen within 2 weeks. We have not stopped the diet yet and want to continue doing it for awhile longer. Our doctor has told us it is much easier on the digestive and immune system. I would encourage anyone to try the diet. The first week was the roughest and I have found several wonderful recipes that my fami
  12. I have never heard of giving a steriod for a headache. What was the name of the steriod given? I would like to mention this to our doctor and see if he would prescribe it for my son. My son is feeling better today and his blood pressures are finally staying up again. I was having to give him 5 grams of salt just to get his blood pressures to stay up. This virus really played hard with his POTS condition. Today I have not had to give him any salt at all. Having POTS and anti-neuro antibodies is not a good combination. My son should be having another LD IVIG treatment this next week.
  13. Yes blood work was ran and everything was ok. M son can do steriods for a short time only- no longer than a week. After that it will incresse his vocal tic. He did not have a reaction to the IVIG this last time when he was in the hospital but still had the bad headache afterwards and a virus 10 days later. Hoping the next round goes better. He has been tested for Lyme and co infections. Everything is negative.
  14. When your child started on long term antibiotics or IVIG treatment, did your child have more troubles with viruses or infections in the beginning? I'm wondering when a virus or infection that is laying dormant in the body and the body starts responding to the IVIG or long term antibiotics if the body (cells open up) will start releasing these virus or infections. Is this possible? This may sound strange but I am wondering if this is what's happening to my son. He has had past testing that indicated strep antibodies and other viruses were present. His Anti-DNase B was 390and range is 0-170.
  15. Hi Cara I went back to look at my son's Cunningham Panel results. The first results indicated Unlikey because nothing was elevated. My son was having symptoms but had just been on an antibiotic for a sinus infection. However when my son got a double ear infection,all his symptoms increased ( headache, vocal tics, hypersensitivity, tremors, muscle and scalp pain) everything on the second test was highly elevated. To me this test is confusing but it did let me know that whenever my son gets sick, the antibodies are present.
  16. The strep culture was negative. No pathogens were recovered. My son has been on antibiotics for 7 days and his throat feels no better. I'm wondering if the 2 pills of antibiotics would mess the culture results up. I am going to see if we can get the strep titer test done. My son had the anti-DNase B Antibodies and Antistreptolysin strep test both ran back in December 2013. The antibodies showed up out of range on the test that measures for past strep infections (Anti-DNase B strep antibodies) 309 range is 0-190. The problem I have with that test was that my son never tested positive for a
  17. I'm very excited that she has started eating again. Is this the first time she has been on minocycline? From what I have read this is not an antiboitic that is normally used to treat PANDAS. So this is very interesting. Wishing you and your daughter the best and let the HEALING begin. Keep us posted.
  18. Please keep us posted. I learn something new every time. My son cannot use the NAC because of high Glutamate levels in the brain and it also lowers his blood pressure. However, I would like to know more about what you replaced it with. I'll do some research and ask our doctor about it.
  19. Could you share what test your doctor used to check for Casein? The reason I ask is because I took my son off of cow's milk and his face rash is gone. I would like to check for a Casein allergy. When he drinks cow's milk, the rash comes back 24 hours later. I'm glad you found some answers. I have been finding some good recipes with Gluten Free SparksPeople website and some recipes are dairy/egg free.
  20. Hi Cara I was wondering if your son had been seen a specialist just for the tics. Tics can be caused by other things. Tics can be very annoying and stressful. I feel for you and hope things get better for son.
  21. I think the it was the Cam Kinase II that was found in Lyme patients but I didn't save the article. I should have but at the time I had just gotten back negative test results on Lyme and the co infections. I wonder if the high Tubilin has anything to do with the gut problem. Might try doing that search. When I do research now, I have started saving the research articles under specific topics. My husbad is amazed at how much I have saved on the hard drive.
  22. Thanks for the information on cats. Our cats have had all their vaccinations. I will keep this in mind but our cats have never been outdoors unless this can be passed on by the parent cat. I will check with the Vet and my son's doctor, My son has been checked for the other two things that you have mentioned but maybe we need to do a recheck at this time. Since we have had the cats and started the antibiotics back in December 2013, my son has had trouble with strep only. I suspect the strep is hiding in my son's body and have asked our doctor if he will rerun some strep titer testing.
  23. I have switched my son to Almond milk and his face no longer breaks out in this rash. I did this several weeks before I ever started the gluten free diet. When he goes to the hospital for his IVIG treatment the rash comes back because he drinks the cows milk. So it must be the casen maybe? He is not lactose intolerant. Thanks for posting this information.
  24. My son takes Deplin and he is 14. He does take it with B12 and a B complex that has B6 (p5p). If you have had testing, his levels may be good in these areas. Talk to your doctor. My son was able to stay more focused after starting the Deplin. It helped with brain fog.
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