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Everything posted by MomtoJake

  1. My son's PANDAS doc said nosebleeds can be due to strep or other bacteria colonized in the nose. His turned out to be MRSA. He is having nosebleeds again so we are going to the pediatrician to have swabs done again. He is having one every other day, sometimes multiple times. Am going to look into the sups that llm mentioned!!
  2. There are some snps on SNPedia. For some reason I can't post the link but if you search Mannose Binding Lectin Deficiency a few snps come up. We did 23 and me and not all of these snps come up.
  3. My son (who also has PANDAS) has a severe/profound MBL deficiency (he has almost none) that was discovered during an immunological workup. The immunologist said that usually the immune system compensates by the age of 5 for this in terms of fighting infection. However I have discovered in my own research that people with profound deficiencies often have co-occuring auto-immune issues or other immune issues: http://www.jacionline.org/article/S0091-6749%2811%2902317-7/fulltext Also here is an article that warns that there should be caution despite the fact that most research shows that MBL deficiency may not be serious. Search "Mannose Binding Lectin Deficiency: More than meets the eye (Clinical Medicine Insights: Pediatrics 2012:6 89–94) There is a ton of research out there. What I suggest is searching you or your child's symptoms or other diagnoses + MBL deficiency. For example MBL+ gastrointestinal issues, or MBL plus dermatological symptoms. Really there is no treatment, only prevention using antibiotics, which my DS is on for PANDAS anyway. There are have been and are studies going on with replacement therapy but to my knowledge that is done only with severely ill patients such as with cancer/getting chemo or acutely ill individuals. Supposedly the MBL has a very short half-life. My DS also has Celiac Disease which a connection with MBL deficiency is supported by research. I am convinced that his almost total lack of MBL played a role in his auto immune diseases due to the ramping up of the other two pathways in the complement system trying to compensate for the MBL at a young age. There have been some good studies associating Lupus with MBL which is an autoimmune disease But what do I know, I'm just the mom! But here is a good article to read that relates to this. The Role of Complement in Inflammatory Diseases From Behind the Scenes into the Spotlight http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1959484/
  4. Hello and sorry that you are in this "club". Just a thought on the thyroid numbers. I know several PANDAS/PANS families that have found out their kids (who has out of whack thyroid numbers) have Hashimotos Encephelitis (differerent from Hash. Thyroiditis) They are being treated at Duke Autoimmine Encephalitis program. You might want to explore that.
  5. Hello, if you are located anywhere near Valdosta, GA there is a doctor who does believe in PANDAS if that helps. I was visiting family there and my PANDAS DS got sick and I took him to Dr. Jonathan Parrot (Info below). My DS was his first PANDAS kid and he ran a strep test for me and kept me there an hour asking questions about PANDAS. He has diagnosed and maybe treated a Syndeham Chorea patient before. So while not a Pandas doc, perhaps he would be a resource for you in the area. And he may know other PANDAS friendly docs in the area. BTW I grew up in Jasper FL, where are you in NFL/ GA? PM me if you want! 804 Northwood Park Dr, Valdosta, GA 31602 (229) 249-7888
  6. My pans ds developed and eye widening tic after dilation. It did go away after about a week.
  7. Glad he is walking again! Regarding the Omnicef- when my son was 2 he was on Omnicef for an ear infection. He stopped walking. It turns out that the Omnicef had depleted most of his Carnitine-necessary in the production of energy in the mitochondria- Doc said he probably already had low Carnitine and this bottomed it out. I would have his Carnitine levels checked. May need supplementation.
  8. My DS has a very severe dust mite allergy- the worst the allergest had seen. We sanitized, covered everything with appropriate covers and wash frequently. Also, he is on zyrtec. We have only done the Zyrtec, but it did give us many months of PANS symptoms relief until DS got Myco P. Worth looking into IMHO. Don't forget the to cover the pillows or buy dust mite proof ones and sanitize blankets and sheets frequently.
  9. I second momoftwinsplus1 please contact NIMH again. Swedo said that it would not be study dependent. Even if you were turned down before, please call. This will not be a part of that study. She was very specific about life threatening cases.
  10. Maria Mako-- I received you PM but I am also replying here just to make sure you see it. Everyone's journey is different but here is a little of mine that hopefully might give you some insight" What I have learned during this last 18 mos with my son is that he flares with mainly the following issues: (His initial trigger was Strep/Scarlet fever) 1. Allergic reactions-- he has a lot of allergies and when pollen etc is bad his meds don't cut it. 2. Viruses colds etc-- ANY illness causes a flare a mild cold, a stomach virus etc. 3. Exposure to someone else with strep 4. Strep 5. Myco P 6. Gluten exposure- he also has celiac disease 7. Dermatalogical issues/skin infections 8. Stress I figured all of this out by carefully tracking his symptoms on a rating scale and then noting any illness, medication change etc as well. I then graphed it and wrote in the changes, illnesses etc. If you would like for me to email you my charting system I would be more than happy too, Just give me your email. Our PANDAS doc had my DS tested for celiac, allergies, immune deficiencies, Myco P. etc. His initial Myco P was negative, but one can catch that at any time-- my DS did last August. Know that it is difficult sometimes to catch the rise in the IGM from Myco P== you may get a high IGG that is indicative of past infection but does not rule out current infection. I would encourage you to have viral titers run and to test for Lyme and co infections. If your DS has any gastric or bowel symptoms it might be worth it to test for celiac. Also an allergy scratch test would be good. I never knew that my DS had such severe allergies because his body was reactive in an autoimmune way vs traditional allergy. Treating them has been so helpful. It is a process and it takes time so do what you can when you can. It is like peeling the layers of an onion. You find something, treat it then go on to the next thing. If one antibiotic does not work, try another. For my son Augmentin is the most effective Hope this helps you!!
  11. Also wanted to say that we use Magnesium Oxide and Ibuprofen during flares and that helps tremendously. When he is not in a flare there is no hyperactivity.
  12. Yes, we do see these exact behaviors during exacerbations. My DS started school, 1st grade this year with a Myco P infection so he was really off. Once I got the teacher educated on his 504 and helped her to understand that putting him on red did nothing to help him things got better. We developed some visuals on his desk that she could point to to get him to calm without calling him out in front of the other children. Also she allowed him to stand to do his work and move around some if he needed to. She also had a loudness visual to let the whole class know whether they should have No talking, whisper, normal voice or outside voice. She could just point to this if my DS was getting too talkative or loud. She had these cute little bugs she made called the "quiet critters". If my DS was quiet and seated he was allowed to have a "critter" on his desk. She also realizes when he just can't pull it together and has another room with a quiet space where he can go to stand, move an do his work. An understanding and creative teacher can make all the difference. Now, he is the star stuident! (well, most days.....)
  13. Yes!! I was just commenting this on a Facebook group- However I did use the word "Idiot" vs "A$$" !! Either one or both works. If they had to quote him at least they used one that succinctly tells the story of who he is.
  14. Sorry you are going through this, we had this issue as well! It sounds like to me that you son is having intrusive thoughts and that he is telling you what they are vs. just having agressive/innapropriate OCD talk. My son would have a physical jolt reaction to intrusive thoughts and I encouraged him to tell me what they were no matter how bad. He would say "Goofy Face (his name for his OCD/intrusive thoughts) is telling me to tell you to wreck the car, but I don't want you to) I wanted him to share them with me so we could talk about them. I also cautioned him from telling others because they would not understand. He is only 7 but he "got" it after awhile. I also agree with other posters that it could be a new infection or just being exposed to someone else that has strep even if he does not have it anymore. His immune system is "in that mode" and it does take time and treatments to stop reacting that way.
  15. I struggled with this too. My immuno really wanted it too because my DS has a complement deficiency (mannose binding lectin) and they thought SAD on top of it would warrant some other treatments. I ended up doing it. I waited until he was stable and I saw no adverse reaction. He did have a strong positive response to the vaccine. He had the vaccine the first week of January and had been flare free since. We will still refrain from other vaccines such as MMR, Chicken Pox, Dtap etc. I just don't want to risk it. It was a really tough decision, but in our case, no harm done that I can see.
  16. I knew it had to be PANDAS- it was pretty clear cut with my DS. Strep that did not clear with Ammoxicillan, (I didn't know) progressed to Scarlet Fever, then overnight presentation of severe OCD, tics, choreiform movements, separation anxiety, urinary frequency, tics etc. My husband and I are avid Mystery Diagnosis watchers and both remembered "Sammy". I googled "Sudden onset OCD" and I was convinced. I went to my Pediatrician to tell her what he had and get ABX. Luckily she had seen one other child with PANDAS before although she was not well versed in treating it. Initialy she did not want to give me the ABX until she ran titers, but relented when I gave her the article. My DS had an immediate positive reaction to the ABX. He was diagnosed with PANDAS several weeks later by Dr. Murphy in St. Pete, FL.
  17. At my son's PANDAS onset, I took the article Chrissy D provided the link to above. Got my son 6 weeks of Augmentin ES!
  18. Here are my son's Genetics Genie results after putting the 23 and Me raw data into it- for those that are curious! Methylation Analysis Results Gene & Variation rsID Alleles Result COMT V158M rs4680 AG +/- COMT H62H rs4633 CT +/- COMT -61 P199P rs769224 GG -/- VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- VDR Fok I MAO A R297R rs6323 T + ACAT1-02 rs3741049 GG -/- MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 TT -/- MTR A2756G rs1805087 AA -/- MTRR A66G rs1801394 AG +/- MTRR H595Y rs10380 CC -/- MTRR K350A rs162036 AA -/- MTRR R415T rs2287780 CC -/- MTRR S275T MTRR A664A rs1802059 AG +/- BHMT-01 BHMT-02 rs567754 CC -/- BHMT-04 rs617219 AA -/- BHMT-08 rs651852 CC -/- ACHY-01 rs819147 CT +/- ACHY-02 rs819134 AG +/- ACHY-19 rs819171 CT +/- CBS C699T rs234706 AG +/- CBS A360A rs1801181 GG -/- CBS N212N rs2298758 GG -/- SUOX S370S NOS 3 D298E SHMT1 C1420T rs1979277 AG +/-
  19. Yes it is obvious-- the locked results are at the top of one of the health reports with little lock emblems- and if you click on it, you still have to confirm on the next page so it is pretty hard to see it by accident. You will be able to see and understand the results pretty easily in the categories of disease risk, carrier status, drug response and traits. This will not give you the methylation results though. You have to down load the raw data and put it in the Genetics Genie or have someone who knows how to interpret have access to your raw data.
  20. "A quick glance at 23andme shows it includes APOE which is a marker for Alzheimer's. My father had AD and this isn't something that with current available treatments I would want to know about, either for me or my kids. I personally, wouldn't want to know my susceptibility for this unless there were more concrete/effective treatments." 23 and me locks the results for Alzheimer's, Parkinsons and some cancer markers. You have to go through several "clicks" to unlock them so you don't have to view them at all if you don't want to.
  21. My PANDAS DS has celiac and and an anti-gliadin IGG that measured >100, indicating above the upper limit of the test. Didn't find out until after PANDAS.
  22. Yes LLM!! My DS has one CBS mutation and am in the process of finding out his SOUX results, since the Genetics Genie does not pull that out. However, the clinician I am working with said we have to start with the CBS issue first. He suggested we stop NAC since it has sulfur, avoid foods high in sulfur and start Yucca Root and Molybdenum. I pulled out my son's labs from a DAN doc years ago and sure enough my DS had a severe Molybdenum deficiency that the previous doctor did not comment on nor address. Have not started the supplements yet because he wanted a stool test first to get a clear picture of any gut issues first, so we are doing that. He said ABSOLUTELY NO METHYLFOLATE or any other methyl donors right now! we had some early success in my son's autism treatment with Methyl donors, however we went too fast without addressing these other issues first. Puzzle pieces falling into place here!
  23. I personally have taken Trazadone in the past for several years for sleep prescribed by my OB-GYN and have had no issues with it, however, I don't have PANDAS!
  24. Here is something that might work? http://nourishinghope.com/understanding-autism-diet-nutrition-and-supplementation/why-diet-helps-the-science/ This website is a good resource for parents- I heard Julie Matthews speak and have her cookbook and other materials- good stuff.
  25. now ds.. he'll just spit for the fun of it.. sometimes to the point of looking ticcy but that could just be my PANDAS rampant mind in action LOL, my DS DID have a spitting tic a year ago! I had to take him to his Ped for asthma symptoms and she, a PANDAS believer, was fascinated and brought her nurse practitioner in training in to see him in action. The nurse was quite baffled by the whole thing! Needless to say, My DS thought spitting for the 23 and me test was awesome! (Spitting tic thankfully short lived and gone a long time ago!)
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