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Adult PANDAS info?


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First, I am so grateful to find this site. Have cried happily many times in the last 2 weeks since finding info on PANDAS. I have a 21 yo son who is a poster child for this disorder. He was very sick as a 3 year old, ran many courses of antibiotics - and ended up with clostridium difficile. For many reasons since then we have used mostly alternative medicine to deal with health issues - with much success - but not all. I am so sad I didn't find this earlier in his life. I've always noticed the link between his symptoms and illness! Anyway, he did pretty well until college. With the increase in illness his symptoms have flaired continually. It has been so hard for him to be a 21 year old with enuresis! No doctor every thought of PANDAS in connection with this symptom. Last summer he had a seizure and extreme increase in tics. Doing research I ended up finding all of you (thank you). He is now undergoing testing. I have to say the medical group, although skeptical, has spent a lot of time on him. Current results show: ASO 641 but throat swab negative. He was just diagnosed with IgG 2 and 4 deficiency, as well as IgM. We are researching a familial component with that. He is scheduled for further tests - for Lyme as well as others, and has appts with the allergist, ID dr, upcoming with a rheumatologist and neurosurgeon. Brain MRI was normal. So, OKAY, my questions:

Does anyone know how to get the anti-basal ganglia antibody test going?

Should we push for Ivig for the enuresis symptoms - have read some of you having great success - and allergist mentioned it as an option.

Does anyone know if there is a forum aimed at adults not diagnosed as children with PANDAS?

I am soo grateful for any input or advice.

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First, I am so grateful to find this site. Have cried happily many times in the last 2 weeks since finding info on PANDAS. I have a 21 yo son who is a poster child for this disorder. He was very sick as a 3 year old, ran many courses of antibiotics - and ended up with clostridium difficile. For many reasons since then we have used mostly alternative medicine to deal with health issues - with much success - but not all. I am so sad I didn't find this earlier in his life. I've always noticed the link between his symptoms and illness! Anyway, he did pretty well until college. With the increase in illness his symptoms have flaired continually. It has been so hard for him to be a 21 year old with enuresis! No doctor every thought of PANDAS in connection with this symptom. Last summer he had a seizure and extreme increase in tics. Doing research I ended up finding all of you (thank you). He is now undergoing testing. I have to say the medical group, although skeptical, has spent a lot of time on him. Current results show: ASO 641 but throat swab negative. He was just diagnosed with IgG 2 and 4 deficiency, as well as IgM. We are researching a familial component with that. He is scheduled for further tests - for Lyme as well as others, and has appts with the allergist, ID dr, upcoming with a rheumatologist and neurosurgeon. Brain MRI was normal. So, OKAY, my questions:

Does anyone know how to get the anti-basal ganglia antibody test going?

Should we push for Ivig for the enuresis symptoms - have read some of you having great success - and allergist mentioned it as an option.

Does anyone know if there is a forum aimed at adults not diagnosed as children with PANDAS?

I am soo grateful for any input or advice.

 

 

Hi,

 

I was diagnosed at 19 (21 now). I got very sick during high school and can see now that there were times as a young kid that I had experienced symptoms, though not as severe. I don't have tics, mine presents as OCD and sensory problems, and have so far only needed antibiotics (no IVIg, although that would be an option if ever needed). Since diagnosis I have mostly been in remission (a small slideback due to illness). I have some physical symptoms as well (arthritis, GI problems, allergies, sinunitis) that I've treated with diet changes and supplements, but those are still something I'm trying to sort out completely.

 

I honestly don't know of anyone else diagnosed as late as I was (if anyone reading this knows differently, please say so), but there are certainly others in their late teens and early twenties on this board and in PANDAS facebook groups who have had it since childhood. I'd be happy to talk if you'd like to PM me.

 

Good luck with your son!

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My 16yo son who has PANDAS is treated with IVIG, his first treatment in Oct 2011 make the biggest difference with his nighttime enuresis. He has not had any incidences since that treatment. He did not have daytime enuresis so I cant comment on that. The NE is the only symptom that IVIG seems to have totally solved, hopefully Ocd and tics will resolve with further treatment. We also have 21 YO with PANDAS that is not currently undergoing any treatment. Both kids we feel have had PANDAs since very young age one about 2YO and the other possible since birth. They had many diagnosis at young ages OCD ADD tourettes etc.

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My 16yo son who has PANDAS is treated with IVIG, his first treatment in Oct 2011 make the biggest difference with his nighttime enuresis. He has not had any incidences since that treatment. He did not have daytime enuresis so I cant comment on that. The NE is the only symptom that IVIG seems to have totally solved, hopefully Ocd and tics will resolve with further treatment. We also have 21 YO with PANDAS that is not currently undergoing any treatment. Both kids we feel have had PANDAs since very young age one about 2YO and the other possible since birth. They had many diagnosis at young ages OCD ADD tourettes etc.

 

HIs is nocturnal only, although he has always had the daytime urgency as well. Interesting to ready why that happens in connection with this illness. The NE goes and goes with flairs, as do his tics/OCD. But, as I mentioned, from freshman dorms to full time college + work - he has been sick a lot. I also wondered..........has anyone identified a non-strep illness trigger through medical tests? I think my DS may have a pneumonia trigger, his brother was found to have klebsiella pneumonia growing in his gut as a 6yo.

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Hi and welcome - so glad you found this helpful and wonderful Suite! I have a 5 year old w/PANDAS and we see both Dr. Elia at CHOP and Dr. Bouboulis in CT. Dr. Elia has mentioned that she has seen aduly and adloescent PANDAS cases, although rare. Dr. Bouboulis is not a pediatrician, rather, an immunologist. He has been instrumental in recovery for my son, who was at one point very, very sick. He is now at 100% a large part of the time. It is very well worth the trip to see him - he is willing to order labs and treat more aggressively than many specialists. Warm wishes to you and your son! -Kath

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I have a 28 y.o. Son who developed PANDAS at age 14. Also has an immune deficiency to strep pneumoniae. has severe OCD and Tourette's despite IVIG. Due to immune def. gets boils and warts. Now getting low dose IVIG monthly which helps with boils and warts, but hasn't helped other problems. Has severe frequency and NE. saw urologist lately who said urinary tract and bladders fine. I have read that the basal ganglia are causing this. Pls PM me and you can call me. So sorry for your family, but glad you found this site. it has been a life saver to me.

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I have a 28 y.o. Son who developed PANDAS at age 14. Also has an immune deficiency to strep pneumoniae. has severe OCD and Tourette's despite IVIG. Due to immune def. gets boils and warts. Now getting low dose IVIG monthly which helps with boils and warts, but hasn't helped other problems. Has severe frequency and NE. saw urologist lately who said urinary tract and bladders fine. I have read that the basal ganglia are causing this. Pls PM me and you can call me. So sorry for your family, but glad you found this site. it has been a life saver to me.

 

 

Can you try HD IVIG or PEX?

 

There are some on the forum that have found LD IVIG doesn't help PANDAS, but HD does. LD IVIG is proimflammatory..

 

Also, Dr. T (in another thread it was posted ) thinks PEX may be better for the older kids (teens /adults). I don't know how this would affect the immune def.? Maybe follow with IVIG?

 

What's NE?

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