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Everything posted by Nick12

  1. This last tip throws me a bit. The testing appears to be a kit that uses saliva that you do yourself. It appears that the results are sent directly to me. Although our world is flawed with privacy issues I am not sure how his genetic results would impact our insurance. It sounds like after getting the results, I would have to ( and possibly a LLMD) figure out the needed supplements and start low and slow.
  2. I will look up the testing you did. Your experience sounds just like ours with so many similar reactions to abx. The worst thing is the length of time we kept him on the augmentin. Whatever damage that did does not seem reversible and to add that issue to the fact that it's October again and things are escalating dramatically... Scary really. We almost did hospitalize my son this past week.. Knowing they do not believe in any of these issues...to avoid that, our local doctor has put him on a mood stabilizer... We know that is not going to get to the root of this, but desperate times. As for y
  3. It certainly sounds like we need to check to see if the micro plasma that we had a year ago is still a factor AND it seems that the script for the supplement had doses that would be way too high. Plus, we started giving one a day never thinking that they would create all our current issues. After things calm a bit I will start with super low doses and add in gradually. I also think you are right in that the p5p seems to be another supplement he can't tolerate.
  4. L methylfolate 3mg, pridoxal 5 35 mg and methyl cobalamin 2 mg. Sounds like L methylfolate was way too high.
  5. Great! Just found a site that helps locate a LLMD. Thank you tons.
  6. Thank you. Our doctor did use Igenix lab BUT I am not sure he is keen to the behavioral changes the abx cause. It was never suggested that I start antibiotics slowly. As for a LLMD, another mom and I are desperate for a doctor that believes in Pandas and is an expert on lyme. I'm not even sure what an LL stands for... will google to find.
  7. Thank you. It will be so hard to get the dosage right but will start out very slowly. Just wish things would calm down so we could get a baseline first. We do b12 injections and have for years but just found out about the mutations last month.
  8. I apologize... This is the script our doctor tried. 1 capsule per day (what is this?) (verify) Metanx is a medical food made by Pamlab that contains L-methylfolate (vitamin B9), methylcobalamin (vitamin B12) and pyridoxal 5'-phosphate (vitamin B6). It is a vitamin B supplement.
  9. Testing showed two mutations for MTHFR. The doctor said if we notice a change with the mentax it's a good thing. It was not a good thing. I'm sure the dosage was too high.
  10. Testing showed two mutations for MTHFR. The doctor said if we notice a change with the mentax it's a good thing. It was not a good thing. I'm sure the dosage was too high.
  11. My son DOES have two mutations for MTHFR. Our doctor started us on Mentax... Had to stop it after 1 1/2 weeks because behaviors were through the roof... Panic attacks, running, insomnia to name a few. We were giving b12 but I have even stopped that temporarily. Feeling like we are in quite a mess and can't get out.
  12. Thank you for sharing. We gave our son augmentin a year ago. Behaviors were worse than any pandas episode, but the doctor insisted bacteria die off. He has periods of doing better, but he has never been the same. Now it's October again and we are going downhill again. We are checking his micro plasma level but there must be more going on.
  13. The doctor is sending a script for lab work and honestly, I hope he finds something. Your responses have been super helpful. It was comforting to know I am not the only one that did IVIG and have not seen the improvement I hoped for. After reading these, I am thinking we did not keep my son on his antibiotics long enough. That would be our fault more than the doctor's. I know many speak of herxing. I am not convinced that is what we saw, but the behaviors became so serious from various antibiotics that we would stop/change them. My son is tall and his safety was literally at stake. It contin
  14. Thank you. I have asked for a script to have labs done again to see what his levels are at this point. The solu medrol was clearly a mistake for us in many ways. Thank you.
  15. I have made numerous calls to vets, whom have made calls to check, and have been told that strep passes through dogs, should they be exposed, but they don't actually carry strep as humans do.
  16. Words can't express how awful we are doing. Working hard with our local doctor and meds to keep my 14 year old son from being hospitalized. No pandas believers there. Completed our first and only ivig this summer followed by sumedrol. We are doing horribly. It has occurred to us that last October was just as bad (he was smaller and manageable then). He has Pandas and tested for an old infection of bartonella. Do either of these go in cycles?
  17. Interesting to read that if there is an infection steroids will make it worse. Augmentin created a nightmare for us... Worse than any Pandas episode. IViG went well, but the solumedrol afterwards has put us back to square one. Hoping something good comes our way.
  18. Our doctor prescribed augmentin last September. His behaviors became worse than any Pandas episode. He kept insisting it was bacterial die off. After 2 months, the doctor switched abx, but our son has never been the same.
  19. I have used 5htp for my son. We actually need to increase his dosage at this point since he has doubled in size. My son has done well on it. He gets every side effect to meds, but no side effects to 5htp.
  20. I tried to respond to a personal message, but system would not allow. I do think my son responds well to many antibiotics (currently Azithromycin and Ceflex), but the augmentin did us in. It has been over a year and I can still see all the effects (severe panic attacks especially) from it. Yes, our son has Pandas from strep. The cause/effect is very obvious. I just wish we had never used the augmentin. Although the Pandas episodes subside at times, we have never smoothed out from that experience. Also, yes, we started clonidine this week, but I can't say I notice A difference yet.
  21. My son was given augmentin for PANDAS also last September 27. How do I remember the date? Sadly, It turned our life into a nightmare. We were seeking help for the tics that still had not subsided although all else was calm. My son started having severe panic attacks...his face would change and he would bolt. He has never been the same and to date, I rarely leave the house with him alone for fear I won't be able to keep him safe. I wish I could reverse that decision. I was told it was bacterial die-off so we suffered with him on it for 6 weeks. Just weeks before we were vacationing at the bea
  22. Thank you. Other than the strep, his testing also showed an old infection of bartonella. He currently takes Azithromycin and cefdinir or ceflex every day. It seems the steroids are causing him to be "over the top" right now (I never got to go to sleep last night as it took him until 5:30 am to fall asleep and only for 3 hours). So many others post the benefits of the steroids... I was hoping for the same. I am hoping the steroids will run their course and we will still get to see a benefit from the ivig.
  23. Thank you for sharing. My son has suffered from PANDAS for five years now. Often we have gone through long stretches of a "remission". Despite being on every antibiotic (augmentin caused even more behaviors) this past year the episodes have been much more severe and debilitating (OCD, panic attacks,) that we finally received IVIG. Although symptoms worsened temporarily, they seemed to be subsiding. However, the solumedrol has made like almost unmanageable. My son rarely sleeps and is so hyper and impulsive when he is awake that I fully regret that part of our treatment. It was helpful to hea
  24. My son recently had his first IVIG treatment (July 15&16) and one month later received solumedrol (steroids) as a follow up. We were so hopeful and yet are doing horribly.Still OCD, but now not sleeping, agitated and impulsive on top of everything else. Has this happened to anyone else? If so, I am wondering how long it took for things to subside. I am also wondering if we may still see any benefit from the IVIG since it has now been 6 weeks and are hoping the side effects from the steroids may be masking any improvement. Feeling so worried and defeated.
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