New to this forum

[Balloonatic]

Hello, I am new to this community, but have been reading for a few weeks. A little background about us.

 

I am in Sydney, Australia. My DD had a strep A infection last Christmas that resulted in a guttate psoriasis response over her body. Around this time she began having to urinate with ridiculous frequency, even wetting the bed for the first time since she was 18 months old. The guttate seemed to be under control with the use of topical steroids until the end of March when it worsen considerably, now covering her entire scalp as well, I asked our GP numerous times to test her strep titers again, as I was sure she either had a new strep A infection, or the original one had not cleared entirely. The GP finally agreed and her titers were extremely high. It was between the 30th March (her 11th birthday) and Easter ( 5th April) that she started to exhibit strange behaviour. It took me a while to realise it was OCD, even though my father suffers from it, as her OCD is all about confessing and repeatedly asking questions, as opposed to his which was checking things were locked etc. It was around this time that she also started to ask me for help with her maths homework, something that she had NEVER had to do..

 

It was actually my middle daughter asking me if it was the guttate psoriasis making DD strange that made me google "strep, guttate and OCD". Up came PANDAS, and a list of symptoms that fitted DD perfectly.

 

I began to search for help, as our GP knew nothing about it, and I could not get answers about who it was I should be seeing to try to get help- immunologist, infectious disease specialist, rheumatologist etc etc.

 

I came across Prof D's name and found that he was the head of Paediatric Neurology at one of our major Children's Hospitals and also at one of the major Universities here. In desperation I emailed him asking for help, or for him to at least point me in the right direction. He answered me within an hour, telling me he would help. His PA slotted us in within 3 weeks (his usual waiting time is about 8 months). I suspected he answered so quickly as she was a good case study because she had the autoimmune response affecting both her skin and brain- Prof D agreed when I asked him, that he gets hundreds of emails a week, but that hers was an extremely suggestive case. I am just eternally grateful he DID answer, whatever the reason!

 

At our first appointment he told us that DD was the most compelling case for PANDAS he had seen as we had ongoing blood tests showing her rising titers, and that she had a "physical embodiment" with the guttate psoriasis. She had just finished a 3 week course of Augmentin, and had shown some improvement. Prof D put her on 25mg prednisolone (she only weighs about 30kg), halving to dose every 2 weeks. We saw about 40% improvement in the OCD and about 60% improvement in the guttate. We had our 2nd appointment yesterday, and discussed IVIG. We have decided to wait another couple of months to see if there is further improvement before going down that route. Prof D would like DD to start on monthly shots of penicillin, following the rheumatic fever protocol.

 

I have read on here that quite a few children are on prophylactic antibiotics, but I am not sure that I have seen anything about monthly injections? Any info would be greatly appreciated.

 

Also, if it has been 6 weeks and we have seen 40% improvement, is it likely that she will continue to improve? Should we consider doing IVIG sooner? I just want my beautiful, clever, easy-going little girl back, but I am nervous about IVIG, and am trying to make the right decision for her, without taking into account the impact on us- especially me as I am her "confessor".

 

Thanks you so much if you have managed to read until the end.

 

 

[MaryAW]

This is a good website started by the top PANS doctors in the US. It will help educate you:

 

https://www.pandasppn.org/

 

I have never heard of injections before but have not researched it either. Did your doctor discuss supplements with you? Most children are on Omega 3s and vitamin D, amongst others.

 

Ibuprofen was also a huge help to my DD. I would do 2 doses daily - one before bed, and one after breakfast. The best things we did for her (who is a real standard case of PANS) was to raise her vitamin D level to over 50 ng/ml. I use NatureMade D3. HUGE improvement. The PANS docs want it ideally between 50 - 80 ng/ml. This takes monitoring thru bloodwork. If she is below 30, try 3000 IUs daily to start. Once you get it up in the range, you can reduce the dose(my DD is now on 2000 IUs with a level of 70 ng/ml). The next huge thing for her was Omega 3s. I give her Nordic Natural Ultimate Omega Junior - 2 pills/2X a day. HUGE improvement.

[Mom23boys]

My boys were prescribed, and had, monthly Bicillin shots by Dr. Latimer. This is the brand name long lasting penicillin shot. One of my boys (10) does not take a pill yet and Latimer thought the shots would be better. Hindsight is 20/20 but the shots are VERY painful. They are intramuscular shots with a very wide needle (it comes prepackaged as a syringe in the US), and it brought my 10 year old (who is pretty tough) to tears every time, even with Lidocaine numbing cream.

 

We also saw no improvement on the shots for the most part, but I know some improve greatly on penicillin. I think we needed a different antibiotic, or perhaps we have no active infections just an ongoing autoimmune response.

 

If you google Bicillin shots you can read about them and what to do to minimize the pain (bringing them to room temperature is key), but they still hurt like the dickens. I might ask about an oral antibiotic instead for such a young child. My 14 year old, who is 5'10 and 150 said they really hurt and he is really tough

[pr40]

i would do IVIG right away. look at the study result from NIH trial. they are very encouraging.

on psoriaris, fish oil should be very helpful. make sure it is purified of mercury.

good luck!

[puppydog]

Perhaps you should have blood levels checked before starting vitamins /supplements to see if there are any deficiencies. NSAIDS can also be very helpful short term.