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Everything posted by beeskneesmommy

  1. I am thinking of about 1/2 that strength - I know there is a kids form of Pepsid script on the mkt so I will try to find out what it is. We are doing the yearly rounds w/Dr's B, L and E in a few weeks and I will ask them as well, I expect Dr. B will be receptive to discussing it. i just need an SOS now, as he is miserable with nose/throat issues and some emergence of tics. I feel very sure that the start of these mild symptoms are allergy related and I need to nip them before the antibodies get themselves into a tizzy! Thank you! -Kath
  2. Hey guys: mold is very hi right now in nc and one of my son's more severe allergies. We have done poorly with classic antihistimines in the past. Can someone talk to me about using Pepsid, dosing for a 54 pound boy age 7? Really getting worried that this will cause a setback to all of the progress that we have made...thank you. Feeling worried!
  3. Myco is not transmitted only by ticks. myco often jumps in opportunistically with bronchial or respiratory illness, like walking pneumonia.
  4. Look, I was 1 foot in and 1 foot out for a year before we made the plunge. It was August of last year that we went GF. On the 6th day we saw a major change. I am true believer...and it's not that hard to do, once you get the hang of it. After that we tested (scratch) again for allergies and his poor back looked like Shrek! He is allergic severely to many, many environmental pollens and molds and his food allergies are also quite prevalent. By taking away the exacerbating allergens, the immune system is not overtaxed as severely, leaving it more ability to work in other areas and creating less "overload". We now do low dose allergy shots. The serum is compounded by Dr. B's office in CT, sent Fedex to me, and I have an allergist here in NC who gives DS the shots weekly. This is the 1st Spring/Summer season that he has held steady and not blown sky high with flare. He still reacts to outdoor allergens and has very minor responses, but noting noticeable to anyone other than myself. I am SO thankful to the ladies that helped me get started! The FB sites Dietary Tightrope" and "Special Diets for Awesome Kids" are great - run and attended by very helpful ladies!!!
  5. I don't want to freak you out, but I would be concerned about some sort of parasite or bacteria in the water that got into him. I am surprised that the docs did not consider that if Lake Erie is that icky. I got a parasite while swimming in the Harkness Sound, CT., years ago. It persisted in extremely painful ear infections that lasted for years. If this persists, i would take him to an ID doc. If it is truly the sunburn, it certainly can be painful but that level persisting for over 48 hours seems pretty unusual...I am so sorry that you and he are going thru this
  6. Hey friends - I just scratched a weird itch and something dropped off. raised bump tells me it's a tick bite and it was a small tick. This leads me to feel quite cray-cray because I cannot find the little bugger! I took a Doxy within 1 hour and plan to do a run to ensure that nothing takes hold. Tell me tho, when it is within the first 24 hrs., how long of a run of Doxy is it again for preventative measures - 3 days or 10 days?
  7. My son was dx at age 2.5. In retrospect I know that the onset was around 18 months and that he was getting Strep as an infant! We battled this beast hard. I cannot tell you how many nights I crept into his room in tears and whispered for him to "come back". Those days were very, very dark. I went thru some pretty devastating depression, but kept going because I had to. I would not be satisfied with less than getting him back. Fully. There were times when I felt the way that you are now...many times. I remember hope waning away and crying myself to sleep for the "loss" of my sweet boy, so many nights. Here we are, at age 7. It's been hard work, lots of research and the help of some wonderful specialists and PANDAS friends. However, he is well. He has been well consistently for almost a year. There have been some minor, and I mean minor concerns since last August, but nothing that has affected his daily life. This is the first allergy season that he has managed without significant flare. He is bright, articulate, getting great scores at school, happy, and fully engaged in sports, friendships and life. he is NORMAL! The biggest pieces of advice that I can give: Get with a specialist, or 2 ASAP. Test for infection so you can target with the appropriate abx. Do not look upon this as 1 cause, 1 cure. rather, consider several angles and pieces of the puzzle. Ask for help, anywhere you can get it. We have all been there and we are willing to help in the areas that we know how! Hang in there and know that you are NOT alone! May love and warmth and comfort come to you tonight. Kath
  8. I do not think that there is enough data regarding one vs the other with our PANDAS/PANS kids. However, I would opt to skip the vax. I would rather my son actually catch the chick pox and gets it over with. There is not enough data regarding the longevity of the vax efficacy. If an adult male catches it, it is serious and can render him sterile. In healthy kids, it is an uncomfortable and unpleasant illness most of the time and once it is done, it is done. I was born in '64 and Chick pox was a right of passage, in a way. I am not advocating that you send your kiddo out to catch it, and the likelihood is less due to so many kids being vaxed for it now, but I feel that even offering this vax to the general population may be a bad idea in the long run.
  9. I don't know a lot about about, but my son tested + for the single mutation. Can you please share the type of vitamin B supplement so that I can speak to his ped. about it? I know that typical folic acid is contraindicated for these kiddos.
  10. Frequent urination is a symptom of PANDAS. Yes, ask for a swab but also request that it is sent to be cultured if it comes out negative. Here are links to a couple of reliable sites: http://webpediatrics.com/pandas.html http://pandasnetwork.org/
  11. Hi - I have read that taking extra folic acid in the form of supplements (maternity vies) can be harmful to the fetus that has a MTHFR mutation...and of course kicked myself because i was so "good" a bout following this directive during pregnancy. However, i just looked at Dr. Jone's site that seemed to recommend takin g extra folic acid during pregnancy...thought? DS7 tested + for hetero mutation, which apparently is not uncommon. Thx!
  12. Hi - diet is SO important for many of us! DS7 has been on abx, long term, IVig x 2. We went gluten free last August and it made a huge diff. He is doing extremely well. The idea is that it frees up the immune system to manage more effectively when it is not fighting a flood of gluten (if intolerant). We did not have any Celiac or formal testing for gluten, although he did show a multitude of food/environmental allergies on the skin prick. However, going GF truly was a game changer, leading us to believe that he is al least gluten intolerant. There are other foods that can trigger inflammation, such as dairy. It is worth a try and the cheapest intervention that we have used!
  13. It has been a many year journey for us, but DS7, who was first dx at age 2.5, is consistently doing great as well. We do not foresee the need for any further IVig's in the future at this point and Dr. B agrees that he is likely on his way. There have been multiple treatment interventions over the years and it is my belief that coming from multiple angle is an excellent approach. Happy that yours is so much better!
  14. It's not that unusual in little kids...even kids without PANDAS/PANS.
  15. http://www.oralb.com/topics/black-hairy-tongue-causes.aspx
  16. 2 total. #1 Sept. 2012 just after turning 6 and another May 2013. For us, there was a def exacerbation each time that lasted quite a while. 14 weeks was our magic mark for looking good consistently, each time. continued to show improvement for 6-8 months. 2nd IVig was to "push him over the fence". He had improved greatly but was still having mild flares, although much less frequently. That was almost a year and he is looking great...however, the addition of going GF last Aug. 2013 allowed us to completely turn the corner. I think it is a combo, rather than just one intervention, that helps our kids heal. He is very well and we do not plan another IVig as it is not needed. He is not perfect, he still reacts to gluten and seasonal allergies are severe. However, the reaction is usually in the form of ADHD-like symptoms and manageable. they are also infrequent. Hope that helps! Remember that each kiddo responds differently for a plethora of reasons! -Kath
  17. We have not used EOs, but I see an increasing amt. of positive information on the boards. I will be following this. Can you tell me what oils you are using, how old your child is and what doses please?
  18. My son was very, very ill. It was a long journey from his 1st dx at age 2.5 to now at age 7.5. The very worst was at his 4th b'day right after a T&A. We lost him. He could barely manage to communicate at one point and rocked and rocked. However, we pushed on, 2 steps forward, 1 step back. Ages 4-5.5 were very hard, although I saw a more solid kiddo as time progressed. Big gun abx, 2 IVigs and GF diet later, he is doing great! He is solid, happy, very social in school and doing very well academically. He is a typical 7 year old kid. We occasionally see flares that are mild and infrequent. He recently had what I believe to have been Strep and the "fallout" was quite mild and short lived. He also started allergy shots and strangely, I think that they are immodulating his immune system. I expected them to cause flare but it seems the opposite. Anyway, it took blood, sweat and tears and I bet I have shaved of several years of my life, but he is on track an has been for quite a while now. I believe that recovery is a matter of several factors, not just one. I also believe that recovery (yes, i said the "R" word again) is entirely possible. warm thoughts to you and yours. Hang in there and DON'T GIVE UP! -Kath
  19. Are you sure that they r hives and not a Strep rash? My son was dx with "Roseola" during the start of PANDAS (after the PANDAS DX) and I now know in retrospect that it was likely Rheumatic Fever. My son also always has had small, transient hives but I can tell the diff because the hives go away faster.
  20. Question: has anyone had to take Terbutaline , either injection or pills during pregnancy to repress early contractions during their PANDAS/PANS child's term? If so, is the child dual diagnosed with PANDAS/PANS and ASD or only PANDAS/PANS?
  21. We started GF last August. I saw a big change in my son within 6 days! We are true believers, where were had not been so much before. There is no doubt that he has significant G intolerance. We have since been to an allergist for scratch testing and discovered that he has a multitude of allergies to environmental things as well as food. We have done abx, 2 IVigs and GF. All have contributed significantly, but the GF is the cheapest intervention and available to all! Good luck and so happy to hear it is going well!!! -Kath
  22. Cara, it can be a very long journey. I do not know your son's story, so it is hard to comment. There are other things that you can do in addition to abx. For us, it took a combo of interventions...and peeling the onion layers.Do you have a good specialist?
  23. Many of us have been there. Really, it's PANDAS Parents' PTSD. The trauma of the roller coaster upon whom our dearest children are riding, is heart rending. In addition, the trauma of being treated poorly by the medical community at times...and having to work every waking moment to get help for our kids, facing unsympathetic family and friends, really takes its toll. I remember when my son was very ill - the dark days - and I am amazed that I made it thru with so little support. Find the positive and cling to it, get support where you can - ask for it! get into counseling if you can, watch yourself carefully for signs of clinical depression and take the necessary steps to deal with it. It is so hard, I know, but if it is possible, get away for a weekend with friends or spouse..or even for a dinner out! Remember, you are not alone. Also remember that many kids pull thru, despite being very, very ill during some of the journey. Mine is one. Warm wishes and kind thoughts to you and yours. Kath
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