Seeking Input About This Case History

[tpotter]

I hate to break this to you, but between my DS and myself (I have rheumatoid arthritis), we see three docs who do not take insurance. These docs do not treat us for everyday variety stuff. The sad reality is, if you want an open minded doc who will spend more than 15 min with you, you may very well have to pay out of pocket. Our insurance reimburses 60% for these docs. I pay upfront and fill out the form and submit the receipts. DS's PANS doc does take insurance, fortunately.

 

Seconded!

 

 

And, I would also highly recommend that you test for Lyme and co-infections. Many people on this forum have found that they and their children have it, and wasted a lot of time not treating it. The smartest idea is to do the Labcorp or Quest WB (NOT THE ELISA), and if it comes back CDC positive, then definitely get an LLMD on board. But, even if it comes back negative, that may just mean you are not making antibodies. It is not the most accurate of tests, but if positive, then you are positive. If negative, go see the LLMD anyway, and make certain you are not dealing with both. Just my personal opinion. Good luck.

[Hopeny]

Not to keep plugging Dr O', (and I have no personal relationship to her), but she does treat PANDAS, can do the correct Lyme tests and could definitely get you started before Sept The visit is around $600 and she does some tests that are out of network too. She takes credit cards if that helps. My daughter has gone from 70% improvement with antibiotics to about 95% with Dr. O'Hara. Last year at this time DD was begging to die, mostly in bed, and one day told me she was afraid that her clothing was going to hurt her. We made the mistake of going to Disney thinking it would help and we had to wheel her around in the stoller with my 2 year old at the time, she was 8. The psychiatrist told us she had to be watched constantly. At Disney I told her I want to make your dreams come true, tell me your dreams, the answer was my dream is to die. She started to wet the bed. Missed 22 days of school in the second semester. Walked with a cane. I was afraid she would hurt my little one. The school psychologist whom she had known for three years walked into the classroom and she didn't know who she was. When she could make it to school I got a call from the nurse almost every day. I'm sharing this with you because things have only gotten better with the right treatment and doctors.

[Chemar]

Welcome borsoog

 

You may want to start a new thread for your post as it is likely to get more responses that way as not everyone will see it on this other thread.

 

Hello I am very new to this forum. I am looking for some answers regarding my son's problems. Probably, like other parents.

 

We're facing really big problem with our son. Will describe shortly what's state for today, why I am writing here and what happened before problems occured.

 

My son is now 3,5 years old. We're diagnosing ASD right now. But, here in Poland this diagnosis could take even more than year, especially, that his state/behaviour is uncommon.

Problems he has:

- completely regressed speech - he speaks nothing. Sometimes says 'nie' (no in PL)

- walking on his fingers

- hands waving

- brain fog

- some sensoric issues

- anxious, scared especially when children cries. We have younger son, which is 6 almost 6 months now, and when he cries older son is very, very scared

- isolated, but looking at children

- still asking for same things (by showing with his finger)

- for 100% liver problems - big belly, but thin legs and hands. Easily visible ribs

- emotional liability (he laughs and after a while cries), very easily irritating

- ADHD - especially recently he started to be very very hiperactive. Sometimes he focuses for a longer, for example with puzzles

- sensory activities - these walkin on fingers, loud sounds, baby crying

- developmental regression - very much. He was speaking. He knew at least 13 words and set them into simple phrases. Now he is unable to say a word. He knew lot of animals - now only few, I would say.

- sleep and night time difficulties - he has very huge problem with falling asleep. I do remember period in time, when he was awakening and crying for a long time. It was strange, because he was like still sleeping - didn't contact.

- urinary frequency at a day: would say - yes. It is very strange that he pisses quite often, but doesn't drink much. He also makes a pile very often (4-5 a day, but stool is quite good).

 

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Why I am writing here? Because we have a problem and looking for solution/origin. That's obvious, but why I suspect PANDAS or something similar? Becuase my son in november 2012 had sore throat and was treated with antibiotics - ampicilin. Of cours, our problems didn't start from november 2012, but we're dating it somewhere at spring/summer 2011. Will write why below. Anyway, after this treatment he started to be more communicative. After long period of time he started to talk something, at least trying to talk (he said very, very nicely 'nie' - 'no' in PL for my question if he finish eating an apple or not. It was so aware and nice with shaking his head correctly). He was much less hyperactive and focused. It looked like he is returning back. Now situation is worse, than before. Maybe the same.

This is the reason, why I am writing here.

 

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Some history.

My son was developing himself perfectly. He is preterm born (3 weeks) and was very little 2510g. We were so happy up to his 18-20 month of year, that he doesn't wait and develops so quickly and smoothly. He was early-babbling, turning in his stomach, crawling on his four, babbling, standing, walking sooner than his other children.

The reggression was after infection or vaccination. We don't know - it was really slowly and discrete. When we compare his speech from 18 and 30 months of life we can see dramatic difference, but it is quite big range of time. We were pointing our doubts to the doctors, but they always was saying that it is temporary behaviour or kids just behaves like this.

He had really lot of vaccinations too. But he had also very, very strange diarrheas when he was 13 months old. These diarrheas were investigating in our biggest polish children medical center (epic fail) without any conclusion. We're not sure of the regression didn't start from here (diarrheas). These diarrheas was very enigmatic and the only one clue about them is my wife's aunt. She is only one connection between our son and other child - her granddaughter which also had such enigmatic diarrheas, at least two times when she was at hospital with this. The times of occurence of these diarrheas could be bigger, but we're not sure how many times she had it. It can be caused by higher contact of the granddaughter with her grandma, my son sow my wife's aunt only two times in life - first month before diarrheas, and second... in the spring 2011, just after what the regression became really visible. My wife'e aunt up to today hasn't cured this issue - she has never finishing rhinitis, some skin issues, headaches and much more.

This is reason, why I am looking for solution here.

 

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What from my son's behaviour doesn't match ASD:

- he has perfect eye-contact

- he smiles very often

- loves to be with his parents, grandmas and other people, thet he knows

- no other ASD-like behaviours

- does not fear new places and people - just stays beside

 

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Could you please tell me if it could be PANDAS? What to do to check that?