You mean we're not alone?

[Kay]

Thanks for the update, so glad your son is doing well. I think it is really important for those who have had some success to come back and let us know, it gives everyone hope. Happy Mothers Day!

[poetmom]

Happy Mother's Day to all of you! Your children are all truly blessed to have mothers who love them fiercely!

[poetmom]

I haven't been on this forum in a long, long time, but today feel the need to peek in.... because my little PANDAS man has strep. Ugh.

I'm posting on this string because it has the whole crazy background of his original story (in case anyone cares to reference it).

 

He is now 9, turning 10 in March.

 

I know he has residuals...things that have never really gone away, fears, etc. But I'm the only one that sees it. In fact, some of it really gets on people's nerves because they just don't get it. Example: this past summer we went to the beach. His extreme fear of water, which remains, had me on edge, but he was determined to boogie-board with his sisters. And he did cautiously, fretfully, screaming demanding instructions on how to help him, but successfully (oh, the patience it sometimes takes!) right up until the wave knocked me down, him off the board, and I couldn't get up fast enough to keep him above water. I braced myself for the fit he would throw. He was mad at me but saw the wave had clobbered me too, so he marched out of the ocean and sat on the sand...for about 5 minutes when a miraculous change occurred and he decided the ocean was pretty cool and he wasn't going to let one big wave spoil the fun.

 

I digress...

 

I am the sole existing witness to the full extent of his illness (we've moved, so his doctors are new, his teachers are new, my ex is remarried, and his siblings don't have clear memories... in fact, rereading the story I was surprised at details even I have forgotten).

 

And now he has strep. First symptoms night before last, confirmed yesterday at the doc, abs started last night.

 

AMAZING NEWS: no PANDAS symptoms

 

So..... here is my reason for checking in today....... I am grateful. Yes, eternally grateful. I am also terrified, confused, hopeful and waiting.

 

IS HE CURED???

 

HAS HE OUTGROWN IT???

 

Did we just dodge a bullet and are incredibly lucky? Is it really just a particular strain and this isn't it?

 

OR..... should I brace myself because even though in the past he just had to be exposed (not actually contract) strep and he would react immediately, is it possible the worst is still yet to come and I've made the call all too early that we are in the clear?

 

What's your experience with a positive strep test and NO PANDAS REACTION?

 

Thanks.

[MomWithOCDSon]

Be grateful, cautious and vigilant! My DS has always been entirely asymptomatic, so without blood tests, we can't tell if he's actually contracted strep or not, but he does still tend to react (his anxiety rises) when he's been exposed.

 

Still, the older he gets, the less dramatic his behavioral response, so I do think there's something to the maturation/achieving of balance of the immune system. Perhaps your DS has achieved it!

 

Just keep an eye out and be cautiously optimistic, I would say! And make sure you have an adequate term of abx to address the infection!

[poetmom]

Thanks Nancy. I was looking for some feedback from someone with an older PANDAS child to tell me if they are also seeing a difference. Nice to know you're also seeing less dramatic responses. This is the first time I haven't noticed any response to having strep (or being exposed) so **fingers crossed**.

I am definitely grateful, but cautiously optimistic. Do they really outgrow it? That would be a miracle.

 

It's so strange to be able to talk to him about it now. I talked to his teacher today and he said, "so you told her to look for if I started acting looney?" HA

He's got a great attitude about it and said, "Maybe this time I won't have ANY PANDAS!" What a trooper!

 

He is on Augmentin for an extended period just to be sure and then will be cultured afterward in the hopes that we've gotten rid of it entirely and it doesn't just ... migrate, which has happened in the past. Augmentin has always been our most successful abx of choice.

[Lydiasmum]

Nope, you are definitely not alone - in fact in very good company! I read your post and can totally relate to it. The school struggle, the doubting yourself, the whole unpredictability of what could be in store day to day. My dd (5) has PANDAS. I worked this out for myself after learning what I could and keeping a diary of symptoms for over 12 months. She has been on preventative abx for 5 months now and things are reasonably good currently. I can relate to the colourless poop by the way! I have seen this in 2 of her 3 flares. God knows what the exact cause of this is, but I do know it's all linked in for whatever reason.

 

The hardest thing for us parents is to learn not to constantly live in fear of the next setback and enjoy all the good days we are in danger of missing as we are forever researching, recording and trying to balance supplements. In fact, my new year's resolution is to live each day! I hope your son continues to do well. All the very best to you and your family.

[qannie47]

Thanks for sharing Poetmom! It is wonderful to hear older cases and see their outcomes! Gives the rest of us such hope! Cheers to NO PANDAS'S SIGHTINGS!!!!

[JoyBop]

I'm so glad to hear you have chose a longer course of abx, just in case. At least you don't have to repeat the journey of trying to figure out what has possessed your child. Please let us all know what the outcome is! This is very hopeful for all of us.

 

We just returned from the NIH and after a prolonged meeting with Dr Swedo and Colleagues she looked into my child's eyes and made him a promise. She said she has been treating PANDAS pts for 25 years and ever single one of them had gotten better. She promised him that within a year or two he would be completely cured.

 

How long had it been since you began initial treatment?

 

Fingers crossed!!

[cara615]

This is such a HOPEFUL thread and we need to see threads like this. it keeps us going!! Positivity is so powerful. Thank you for this!!