New: overwhelmed, possible PANDAS

[LucyC]

Hello,

 

Thank you for all the info in this forum - I am trying to take it all in but so difficult as I am so exhausted/frightened about what has happened to my 5 year old boy in recent weeks. All of a sudden he has developed severe urinary frequency issues and within 2 weeks of that, severe motor and verbal tics. He is also drooling and chewing on toys, fingers etc all the time.

 

Our story in short. We just moved half way round the world from UK to my husband's native New Zealand in January. It was supposed to be the start of a wonderful new life but somehow it has turned into a nightmare in a matter of weeks.

 

My son started a new school first week of Feb. He wasn't especially anxious about it (he's not a particularly anxious child). At the end of the first week, he was constantly going to the toilet for a wee. I took him to the doctors as thought he had a UTI. No UTI. Then came the sleep disturbances. Repeated nightmares, and he got so scared he didn't want to go to sleep so he'd take 2/3 hours to get to sleep at night (also because he was constantly getting up/down to go to the toilet). About 2 weeks after this started, I noticed he was making a loud sniffing noise incessantly. I didn't realise it was a tic, and asked him to stop, but it became obvious that he couldn't stop. And that very day (26 Feb) he started with violent neck jerks. He has never displayed any tics before - he is not anxious by nature nor does he display any OCD type traits normally (I should say that his dad had mild tics as a child but not on the scale of the neck jerks we are seeing in my son).

 

I took him to the doctors who ordered blood tests, but he thought just a reaction to all the changes my son had undergone in preceding weeks. But the following week, the strep blood test came back as elevated and he prescribed 7 days antibiotics, although the tics had calmed a bit by the time he started the antibiotics (but not the incessant weeing). His tics were much reduced for a period of 2 weeks (one of those weeks he was taking antibiotics), and nightmares seemed to calm down, but still excessive weeing. Then about a week after antibiotics had finished, the tics came back much more severely than when they originally came on. He is now pretty much urinary incontinent - he wees so often and commonly doesn't make the toilet (only small amount of urine each time).

 

I've been back to the doctors and they suspect PANDAs and have prescribed at least 3 weeks of antibiotics, which he has just started.

 

PANDAS symptoms started in first week of Feb (urinary frequency). He had a sore throat in January which he didn't take antibiotics for, and he seemed recovered enough. I had bullous impetigo which I had to take antibiotics for in the same week the urinary incontinence started (which was a complication from insect bites). He also had the hepatitis b jab two days before the urinary incontinence started, as it is part of the standard childhood vaccine schedule in NZ but not UK. I also noticed the other day that he has a sore looking red ring around him anus (now gone). There seems to have been so many potential triggers/changes in our lives at the moment, I am so overwhelmed!

 

Strangely enough, in spite of all of this, I am in regularly discussion with my son's teacher at his new school, and she is very happy with his progress. He has made friends, doesn't seem anxious at school. She has noticed the head jerk tic (you can't not) but that aside, he is settling well and doesn't seem anxious.

 

Sigh. So much to wade through. Not really sure of the point of this post. I just feel so heartbroken, and am desperately trying to help my gorgeous boy.

[sf_mom]

Your son's story seems so similar to our own son's story at age 5. You have fantastic motherly instincts and you need to continue your pursuit of underlying cause of TICS, nightmares, urinary frequency, etc.

 

My son's PANS was triggered by MMR booster and strep related illness. He too started with a neck jerk, ear flicking, dilated pupils, frequent urination, mild OCD of hand washing and sudden separation anxiety when dropping at school or camp.

 

He is now 12 years old and no one would know he ever suffered from PANS: very bright, thriving in school and playing competitive sports. We eventually discovered our underlying issue was chronic Lyme et al and not just strep. Strep was an obvious trigger along with the vaccine. My son's Lyme is gestational, he got from me in-utero. My symptoms where mild prior to pregnancy.... Fibromyalgia 'like' symptoms after pregnancy.

 

I know your heartbreak. I also know you can and will sort this all out to help your son.