Autism Maybe PANS

[Momwithacause]

I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse.

Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year.

I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet.

After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store.

Currently he is on his 3^rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful.

Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.

[MomWithOCDSon]

Hi! You might want to post over on the PANDAS forum here since that one tends to be more active here at ACN, especially with regard to the questions/concerns you're posing.

 

For me, the positive response to abx would serve as a big clue that there is an infection and/or auto-immune related issue in the mix. So, yes, I would pursue PANDAS/PANs. Over on the PANDAS forum, you'll find that many families have utilized one or more of each of the potential interventions you've noted, to various degrees of success. Unfortunately, at least insofar as the research and experience goes today, there doesn't seem to be a single protocol for all PANDAS/PANs sufferers. We found that long-term abx (2 years) worked for us while others have done IVIG, PEX, etc.

 

Is your DAN PANDAS-savvy, and can you get to him now that he's relocated? If not, check the pinned threads at the top of the PANDAS forum for a list of PANDAS-knowledgeable practitioners in your area; I know there are many families from California who are active here and have successfully found treatment.

 

In the meantime, presuming you can maintain your DS's healthy gut, I would keep him on the antibiotics and track his progress with videos, a written journal, etc. These will be very helpful tools for your practitioner and will also help you more quantitatively assess the gains, even on days in which the changes are more subtle.

 

Good luck!

[Momwithacause]

Thank you Nancy I will post this on the PANDAS Forum

You have been so helpful

& I will see if there is a PANDAS Practitioner in my area

My doctor is versed in PANDAS. We have traveled to see him, & would have to travel to see him in California or Florida since we are in Texas

 

Thanks

Renee

[MomWithOCDSon]

Oh goodness, you're in Texas! There are a few practitioners there, as well. Saw your post over on the PANDAS forum, so I think you'll be in very good hands soon enough!

[mama4]

Someone was just posting over in the Pandas/Pans forum that Sue Swedo (at the Pandas Conference) said the often shared characteristics of autism and Pandas are encephalitic. Some PANDAS kids have autistic characteristics, but not an autism dx. I think it is a route worth exploring for kids with autism as well as kids with any serious psychiatric problems like severe anxiety, depression, bipolar etc. I am glad that the autistic and Pandas groups are sharing info on this. I wonder if research is going to show an encephalitic/autoimmune connection for at least some cases of autism. I wish someone would study kids with autism who go on antibiotics and do better. Maybe they already have. Does anyone know?

Edited November 2, 2016 by mama4