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PANDAS - PITANDS - any advice?


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Hi,

I posted quite a while ago on the TICS forums. But I am wondering if now my son's tics could be caused by PANDAS or PITANDS. He has never had a really sore throat or any throat swabs to confirm.

 

My DS 9 had quite a few tics starting August last year with eye blinking, throat clearing. Things did improve and we had a good few months from April till about June this year when the eye blinking came back for a couple of weeks. He had just got over a cold - no sore throat. Our doctor ( we are in the UK - no PANDAS specialists here!) did a blood test and his ASO titres were 400 IU/ml and his anti-DNase titres were 383 U/ml. His serum ferritin (Iron) was low at 20 ug/L. Our doctor mentioned that although he didn't believe the tics were caused by strep they could have aggrevated his tics. This is the first time I thought about PANDAS.

 

The tics lasted 2 weeks in June then cleared up. Our doctor prescribed Penicillin (250mg 4 times a day for 7 days then 250mg once a day for 3 months). However, after 6 days of the Penicillin my son came out in a rash which I thought was a reaction to the drugs but the DR said it was shingles!! Shingles didn't bother him overly, but 7 days after the Shingles his eye blinking tic has come back, he is now only taking 250mg Pencillin per day. The DR didn't think the Singles had anything to do with the Pencillin but I was wondering if he has really low immunity.

 

The DR believes that my DS has had a very stressful week and that could be why the tics came back. They came back suddenly, on Saturday morning. He has just got over shingles, had 2 dental appointments (he hates the dentist and has quite bad teeth and may need fillings), an orthodontist appointment and school is starting in just under 2 weeks. My son has also always suffered with aching legs and arms at night since he was about 3 years old. We have seen various doctors and they have all said growing pains.

 

Any advice would be welcome. He has no OCD or other symptoms, just the tics. They came back suddenly. I just hope they go awaya again as we had a bad year last year and I don't want to go through it all again.

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Hi,

 

Welcome to the PANDAS forum. In terms of trying to find someone in the UK who knows about PANDAS...I'm thinking that the Autism community is probably your best bet, whether or not your DS is on the spectrum. The DAN!/Biomed trained doctors are likely to know the protocols. My DS sees a DAN! here in Australia and he's my hero - our now ex GP was no help at all, and was openly hostile. It's good your doctor is open to the idea of strep being somehow involved. On this forum there has been lots of mention of teething issues linked to PANDAS symptoms. Strep can hide out in a number of places in the body.

 

If you go to the Autism Research Institute website (link below), you'll find a list of DAN clinicians, including several in the UK. Do also read the advice given for finding a clinician and the disclaimer. It would be a good idea to ask around within your local Autism community for a good DAN! - Don't be put off, as not everyone in the autism community will know about the DANs, but keep asking.

http://www.autism.com/pro_danlists_results.asp?International=true

 

Good luck!

 

Edit to explain - DAN! stands for Defeat Autism Now!

Edited by Ozimum
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Hi

Thanks for your response. Yes, DAN is a good way to go - I havn't thought of that.

My DS has no other problems except the tics.

I just thought it strange that his bloods had tested for strep a couple of months ago - after a cold. And a week after Shingles his tics have come back which made me think of PITANDS. Is it right that PITANDS could be a cause after any infection not just strep?

Are there any Mums out there whose children have PITANDS rather than PANDAS?

Cloudy

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Hi - we're originally from the UK now in the US with 2 PANDAS kids. I asked our PANDAS Dr here who we should see if we ever find ourselves back in the uk and he mentioned a guy at St Barts in London Dr Gavin Giovanonni. Here's the link my Dr gave

 

http://www.bartsandthelondon.nhs.uk/forgps/handbook/consultant.asp?cid=454&tt=2&sid=32&pid=7687

 

He also mentioned a Dr Mary Robinson in London but I couldn't find much on her and never pursued either as we haven't needed it, so can't say how good either are or if they even treat. You could look at a Lyme Dr... one of the LLMD's that has had the specilaist Lyme training. Even if Lyme isn't an issue for your child they may be better able to explore infectious causes and be more open to the idea of PANDAS/PITANDS than run of the mill Drs.

 

Our ds3 seems to be just PANDAS but our dd8 seems to be PITANDS (although we still say PANDAS out of habit).

 

Our dd8 appears to have been initially triggered by strep but now she will react to other infections too and even had a flare following an acute allergic reaction to a food.

 

Good luck in sorting all this out. I'd be interested in which drs you see and if you manage to find any that really get annd are willing to treat PANDAS/PITANDS.

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