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Everything posted by mom2gsd

  1. My son's PANDAS began in '08 (+Lyme '09)....slightly better in 2012-13....here it is 9 years later....now Epilepsy 2015 (intractable Lennox-Gastaut). I believe it's all related and it sucks!
  2. My son is now 20yrs old, I was once a member of this group years ago. He was 11 when the PANDAS symptoms began in '08, he has autism, received 1 1/2yr of IVIG, with little improvement, then was later DX with Lyme. Long course of antibiotics, plus Dr Goldberg's NIDS protocol with antivirals, after a year he began to make improvements...then had 2 good years....then rages and all of the PANDAS symptoms returned along with generalized seizures that began July 2015 and has continued daily, anywhere from 1-6 times, Tonic Clonic, Clonic, Myoclonic or Gelastic. He's on seizure meds as well as CBD oil
  3. Mandy, you said...."the only thing that happened was her chest spasms, which is where she stops breathing and i breath in her mouth and she goes on her merry way". My understanding of your comment concerning your daughter is that she could have very serious complications that could possibly result in her death if she does not receive "immediate" attention. I have a feeling that the school is also concerned about the seriousness of her situation. Have you made steps for her to carry an AMBU BAG with her at school? If it were me, I would keep her on homebound for awhile until she becomes stable.
  4. I can sure relate to your post, I was hoping we had it figured out too......b/c it's way more complicated than just having PANDAS alone. I've given up on not looking crazy!
  5. Just wondering whether those that had a + Western Blot BEFORE having the Cunningham test done, did you notify Dr Cunningham to let her know you were also positive for Lyme? I did, she said was grateful, that this was important to know for her research.
  6. There are some natural repelents, you might want to do a search. As far as yard control....diatomaceous earth is great stuff (only use food grade), you might goggle it too. I'm using it on my dogs and cat this summer.....not one tick or flea yet this season!
  7. We are one of those that did 16 months of IVIG on my son, with mimimal success. Actually thought since he had PANDAS sx for so many years, that it would just take some time to see improvements. WRONG. He tested positive for Lyme! We are now on a different path, but he also continues to get strep infections. I'm hoping this will resolve with continued Lyme treatment. It was asked if everyone tests + through IgeneX, from what I read on a couple Lyme forums I'm on, the answer is "no". But it does look as if this is a much more serious disease than people are willing to believe. I do not think eve
  8. Hi Elizabeth, We started out on high dose at 1.5, but after a growth spurt they became LD, we upped the anty to 2g/kg (over 2 days) for the second half. We began treating Lyme for the last 5 weeks, but he has had another strep infection, a bad Doxy burn and just this past week, had a horrible stomach virus, too sick for any meds. We are on hold at present on IVIG, and even then, he was positive for strep just following his last one. He is a neuro mess...his neurotransmitter test we just had done was "all elevations"....off the charts. I have to hope we will soon see him begin the healing pro
  9. I'm so glad to see more posts concerning Lyme. After my DS14 was dx with Lyme in May, I have not been on the list often. We did 16 months of monthly IVIG for PANDAS, with only some improvements, began looking for other infections...found Lyme. Just tested positive for Strep (again) following another exacerbation this past month. I would suggest to test for Lyme, if your child is not making improvements or continues to slide downward.
  10. We decided to go ahead and obtain CamK tests for my son, because after a year of monthly IVIG, he was only somewhat better. So, even knowing he was just a week past IVIG, was on Zith and had received IV steroids, days prior....we went ahead and had them drawn, he was 148, still in PANDAS range. This also made us begin testing for other co-infections, found out he tests positive for Lyme.
  11. Which Igenex test did you do? I went on their website but was confused at which test would be best. My daughter had a Western Blot by Quest Diagnostics and came up IgG & IgM positive for band 41 and IgG positive for band 66. The test we did was IgeneX #4090 Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen (IFA)
  12. We did the IGeneX basic Lyme panel.....he was positive for 3 double star bands..... 31: 2+; 41: 1+; 83: 1+
  13. The pieces are beginning to fall into place, yesterday I posted this documentary and later that day my DAN called to tell me that my DS has Lyme! Call it, intuition, I guess. After a year of IVIG, with only some improvement, this may answer the why(?) question. I would suggest to everyone, if your child is not improving....DO NOT...fail to test for Lyme! I do not honestly remember him ever having a tic attached, possibly when he was very young.
  14. Looks like an excellent documentary on Lyme disease:
  15. I honestly questioned the full moon the day before yesterday...dd off abx for 4 days, full blown exacerbation and then non-PANDAS dd starts with cold symptoms...too many variables....it is too hard to know the root cause from day to day. I know what you mean about the full moon, my guy has been doing soooo well, then yesterday.....spitting tic is back! Yuk!!! I'm so tired, and he is so sad about it resurfacing, will it ever go away? Thurs was such a good day, but he acted too calm and quiet, then later he wrote that he didn't feel right.
  16. Sorry about that, didn't realize how long the post was!
  17. If you don't want to watch the video: MYCOPLASMA The Linking Pathogen in Neurosystemic Diseases Link to article here.
  18. I have seen the same thing with my son over the years. He is on in Inosine 300mg daily in divided doses (it converts to the antiviral "Immunovir" which is Inosine Pranobex) and he is on Lauricidin, too. Antivirals are very expensive, Immunovir is $400 for 3 months, and is not sold in the US, although you can get it from Canada. Inosine is sold as a supplement and costs around $30 per bottle, monthly. My son high high titers in EBV, HH6, MycoP as well as having PANDAS, still waiting on more lab to return with Lyme results. Not sure if your familiar with Dr. Goldberg and the NIDS protocol, but t
  19. Are you sure your daughter hasn't been exposed to strep again?
  20. My son is 14, has asd, severe global dyspraxia, and PANDAS. We just completed month 13, of Gammaguard. Started out 1x month using 1.0mg, then over 2 days for 6, but he had huge growth spurt during the second series; now at 2.0 (over 2 days) for the next 6x. I believe success depends on many factors, plus other co-morbid conditions, whether identified or not. Choreiforms movements are the real problem right now, along with OCD, tics are less frequent.
  21. My son has not been the poster child for IVIG, BUT he has made improvements. Do I have regrets, no....sometimes disappointed that improvement have been slow, when others have had the speedy ones. All of our children are different, mine has autism, with other things going on, than a NT kid, so you have to take that into account. His tic became debilitating to where he was ostracized from school and all public places, so what kind of quality of life was that? It continues to be a bumpy road but he continues to make slow steady improvement.
  22. My son does fairly well with IVIG, in home. At first I was a nervous wreck, but I also know my son(14) is so tired of this...he's been remarkable through a year of IV's. I think the doctor could prescribe a good drug that would help. Best of luck to you.
  23. Could it be that some "teens" have a rough spot following IVIG, possibly d/t hormones? Wonder if this plays into it? Interesting.....mine does it too.....he just turned 14.
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