mom2gsd

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!

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, which has not stopped them. It's been a nightmare and he has no quality of life! At the present time our Neurologist is not treating for PANDAS, only epilepsy...but I'm concerned he is missing the key element. Does anyone know of a situation like ours?

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. My son is in SpecialEd and I'm sure it's a humiliation to be placed in with children with a disability, but it sounds like the school is trying to keep your daughter in a more protected area where she can be monitored closely. Hope everything works out for her and wishing you the best.

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!

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.

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!

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 everyone has Lyme, but if you or your child can not rebound from having symptoms, then it's worth the money spent on testing. My son may have had this for 9-10 years, he has a Dx of autism, at age three it was considered mild, over the years he has continued to regress and shows more signs of neurological decline. I am just hoping to save my son, and I hope to give an eye opener to others that hasn't seen improvements. Our story is very long and sad, wouldn't wish it on anyone.

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 process. Lyme makes everything more complicated and so much worse.

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.

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.

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)

Are you treating her for Lyme?

about 2 1/2 weeks

We did the IGeneX basic Lyme panel.....he was positive for 3 double star bands..... 31: 2+; 41: 1+; 83: 1+

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.