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momcap
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Hi, I'm new to the forum and have been reading posts for a couple of days. I suspect my 6 y/o ds has PANDAS and I'm wondering about Lyme. I'm feeling overwhelmed and I'm looking for advice on what to do next.

 

We moved to a farm when C turned 3 (and also had baby #3 three weeks before moving), and shortly after the move he went completely berzerk (rage, banging head on wall, biting self, hurting others, breaking windows, shrieking for hours, etc). He was always a difficult child but this was something new and scary! Here we are 3.5 years later and he's had almost every label you can imagine: ADHD, ODD, OCD, SPD, separation anxiety, social anxiety, selective mutism, GAD, mood disorder-NOS. We have not been able to rule out or diagnose AS despite seeing a leading specialist. We are treating for juvenile bipolar which fits better than any other label in the alphabet soup. We also have questions of Tourette's because he has vocal tics occassionally at school, although we've never seen them at home. All of this behaviour is episodic, and he has good periods of time, usually in the summer when everything goes away - even the sensory processing disorder. I noticed almost 2 years ago that he's often sick before having an episode. I've shared my concerns with countless doctors and other professionals, done every test we could think of, and everything comes back normal. I KNOW something physical is going on with him, and the physical symptoms keep increasing. He used to be extremely athletic. Now he hardly even runs. He gets random pains that are very severe. He had a spacing-out incident at school that may have been an absense seizure. Now he says it hurts to breathe if he runs and doesn't want to go outside at all. And the latest is that he's complaining of chest/heart pain.

 

C is in the middle of a behaviour episode right now, which usually does not happen in the summer. I heard about PANDAS a few weeks ago and rushed him in for an ASO titer. It came back at 512. Our doctor has heard of PANDAS and put him on penicillin. We're on day 7 of a 10 day course and only seeing some minor improvement, which I'm afraid I might be imagining. WHAT NEXT?! I wish someone could give me a checklist - "do A, B, then C and it will all be okay". Oh, and I'm in Canada which probably complicates things a fair bit.

 

Please help!

Mom to C (6), A (5), & P(3).

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Welcome - as many others will say, we're sorry you're going through this, but glad you've found this resource to help you along. It sounds like you've been on a long tough journey but I know you'll find lots of support here. I know I have.

 

Unfortunately there is no "manual" with a handy "to do list" (If there was, many of us wouldn't be here right now!!) The thing that stands out to me about your story is that his symptoms subside during the summer when he's out of school (and presumably not exposed to as much "stuff") It sounds like you're seeing some improvement with the penicillin, but you may need to try a tougher antibiotic. Most of us are on varying antibiotics with results - some folks have had to try several to find the right fit. (We've been on azithrimycin for 7+months with good/steady results).

 

The best advice I can give you, is start a checklist of your son's most critical/recent symptoms and behaviors that you've noticed, and grade them every day. This way, you can see looking back over time objectively if he's really getting better or not. I'd say it's important to grade him that day - and not wait a day or two to fill in, since you want it to be your honest reaction of how he is at that time.

 

Another parent on here, Buster, who is the resident research dad put together a checklist to do this. It's on the forum if you want to search for it (I'm posting from my iPad which makes a search for me tough right now, or I'd post a link...sorry!) I used that as a basis and modified it to include things more specific to my son's case (certain rituals for example.) It has really helped us track his steady progress and improvement, as well as identify patterns in his behavior. For example whenever he's even exposed to strep - he starts to bite, so now, when he starts to bite we call our pediatrician and take him in to get checked for strep and determine if we need to change his abx for a brief time. The "crazy mom binder" that I've collected with all of this data has also helped me when I have to explain to others (school officials, dentists, etc...) who aren't familiar with PANDAS what's going on. If you can't find Buster's checklist, feel free to PM me and I can send you my xcel sheet from my son (it graphs the daily results so you can visually see a pattern)

 

Also - I seem to remember someone looking for doctors in Canada (Toronto) just recently...but I can't remember if they found one. When I get back to my regular computer I'll see if I can find that thread and post a link for you.

 

I'm sorry you've had to go through this, but hopefully you've stumbled on a path to get your child back!

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Hi there.

I'm another fellow Canadian struggling to find help for my son. Our health care system is tough to navigate - especially for anything out of the ordinary!! I just sent you a personal message.

PKM

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Hi there.

I'm another fellow Canadian struggling to find help for my son. Our health care system is tough to navigate - especially for anything out of the ordinary!! I just sent you a personal message.

PKM

 

I'm not sure where in Canada you all are, but I got the name of a PANDAS friendly doc in Buffalo NY when I went home to visit this past summer (we were in the throes of an active strep infection at the time.) I also think that there's one in the Rochester area too. If you are in Ontario, Buffalo is just across the bridge, and I think there's now Ferry service across the lake to Rochester...if that's an option for you.

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Hi momcap,

I am so sorry about your son! I think there is a good chance he might have PANDAS. If he's had it for a while, you probably will not see dramatic improvement on antibiotics (unless you just happen to get the perfect abx and the correct strength). The fact that it seems to hurt to breath and he does not want to go outside or do much suggests he might have something more than strep going, maybe mycoplasma and/or lyme, so maybe you need a different antibiotic. My son tried several until we settled on high dose Augmentin. The strength is key in order to see improvement.

I don't know what to tell you since you are in Canada, I don't know if you can even do a phone consult with a specialist here in the US. Some people have had good luck with Lyme Literate doctors and/or naturopaths (they don't seem to be so afraid to prescribe antibiotics!), so maybe you could search that way.

All the best and keep coming here for support/advice!

 

Isabel

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Here's a link to the dx/treatment flow chart:

http://www.latitudes.org/forums/index.php?showtopic=6688

 

Also, you might want to check out the very 1st pinned thread at the top of the forum

that has a lot of info and links to scientific literature, which you might use to get help from a doctor who is willing to learn.

 

I agree that most people do not see significant improvement with pennicilan. Zithromax is what works best for us.

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