anyone else have to isolate?

[adkmom]

So, I'm having my own meltdowns. Can't understand. My DS4 seems somewhat okay with behaviors at home. But as soon as I take him to a public outing ...grocery shopping today (for only a half hour!), he got so hyper, loud, jumping in and out of the cart, couldn't listen to me. ended with a total meltdown, crying and screaming, rolling around on the checkout aisle (all for over something silly). Couldn't console him and had everyone around looking at us!

 

Does anyone else have to keep their child isolated at times? He's 3 days off prednisone and 1 month into Omnicef. Tic is still there along with aggressive behavior and emotional lability.

 

would LOVE some feedback. i'm worn out

 

PS- this was our first outing in a week!

[kimballot]

In answer to your question - YES we did need to "isolate" my son from outside environments when he was younger and in exacerbation. Over time we learned which environments he could tolerate/ function in and which were off limits.

 

I don't know if your son has sensory issues, but many kids with PANDAS do have sensory processing problems when they are in exacerbation. These can take a while to calm down afterward. The grocery store is a very open and stimulating environment. Plus... you are probably busy shopping and getting your own things done while in the grocery store, so you may not pick up on your child's subtle cues of "overload" until it is too late.

 

Maybe you can try different environments for outings to start re-integrating. library time with you - then library story hour with you outside the room... etc.

 

Does your son go to preschool?

[nicklemama]

Oh, yes. I would not take him to Target or the grocery store because he would have a meltdown when he couldn't buy a toy. He was so obsessed w/ buying certain toys. I limited noisy places and highly stimulating environments. He was diagnosed w/ sensory processing disorder- sensory seeking before we had a clue about PANDAS. He wanted to look at and touch certain things in the stores. It took us forever to get the shopping done. My nerves just couldn't take it w/ him at Target, grocery store, etc..... and I was on eggshells the entire time wondering if he was going to have a meltdown.

 

Cindy

[adkmom]

Thanks for the input. He has always had some sensory issues, never diagnosed. But before PANDAS diagnosis, was okay out doing things. Now, it's immediate disasters. Gets so confusing, thought maybe I just haven't been disciplining him enough. But the meltdowns are soooo extreme. He can't even hear me when he's in one. He's 4 but they still seem too over the top, even for a 4 year old.

 

thanks ladies.

[Kiera]

My ds 8 also had a diagnosis of sensory processing disorder prior to PANDAS and one of the main symptoms (besides OCD and TICS) was extreme sensory sensitivities and overload, much worse than ever before eg. had to leave Church (fans bothered him) had to leave restaurants (smells bothered him) had to leave stores for meltdowns (probably overloaded with lights and noise) etc, etc, so this is all typical PANDAS behavior. Try doing outdoor stuff like the park where he can run around, to give yourself a break from the house!

[adkmom]

In answer to your question - YES we did need to "isolate" my son from outside environments when he was younger and in exacerbation. Over time we learned which environments he could tolerate/ function in and which were off limits.

 

I don't know if your son has sensory issues, but many kids with PANDAS do have sensory processing problems when they are in exacerbation. These can take a while to calm down afterward. The grocery store is a very open and stimulating environment. Plus... you are probably busy shopping and getting your own things done while in the grocery store, so you may not pick up on your child's subtle cues of "overload" until it is too late.

 

Maybe you can try different environments for outings to start re-integrating. library time with you - then library story hour with you outside the room... etc.

 

Does your son go to preschool?

 

Kim,

We took him out of PreK for the next few months at Dr. B's suggestion. Trying to keep him from any viruses circulating while we try to figure out how he responds to the meds. Thanks for the library tip, I'm going to try a "quieter" activity and see how it goes...we're going crazy locked up together!

[kimballot]

adk -

 

If you are thinking there are some sensory issues then you might want to read "the out of sync child". Remember that kids with PANDAS may fluctuate in their sensory processing, so one day you could have someone who hates sensation and the next day you could have someone who can't get enough. Here's the website, - and it has links to more info:

http://www.out-of-sync-child.com/default.htm

[browneyesmom]

Oh goodness, yes. We have been there too! One time, she melted down in a Wal-mart, attacking me in the checkout line and another time - just last week, in a Target - I initially called my husband for help & he had to call 911 for EMT's to help us & she wound up in the hospital ER again. You're not alone, if it helps to know.... sorry it was such a tough day. ♥

[adkmom]

It's so confusing. Sensory issues....he'll complain that his brother's too loud but yet HE is talking the loudest??? And it's never consistant. He'll complain one day and then I won't hear it for a week.

 

He'll have the meltdown and then 10 minutes later be chatting and smiling like nothing happened!!!

 

Thanks everyone.

[PhillyPA]

My son is the opposite. When he is out shopping or out in the city or out to dinner - he is so calm and happy. If you take him out anywhere - he is happy. He loves sitting at restaurants in center city Philadelphia and people watching. He could sit there for hours at outdoor restaurant seating and be totally happy. He does not like being at home. He always wants to go out. We have taken him to fancy restaurants and he is as good as gold.

 

He lost his language at age five during his first and biggest pandas episode. He is still not talking much. He has lots of OCD and tics. When we take him out, his tics and OCD go away. When he first got sick he said, "I have got to get out of this house". That stuck with him. Also, I told him that he has got to talk and he said, "I am never talking again." I believe that the not talking and wanting to leave the house are major manifestations of OCD. He might not talk all week and then say, "Will you just get the apple juice." Or, "Wow, the moon looks really big." And then - that's it. He will touch my lips and say, "say words, Mommy". Dr. Latimer said he is trying to figure out how to get over his aphasia.

[adkmom]

My son is the opposite. When he is out shopping or out in the city or out to dinner - he is so calm and happy. If you take him out anywhere - he is happy. He loves sitting at restaurants in center city Philadelphia and people watching. He could sit there for hours at outdoor restaurant seating and be totally happy. He does not like being at home. He always wants to go out. We have taken him to fancy restaurants and he is as good as gold.

 

He lost his language at age five during his first and biggest pandas episode. He is still not talking much. He has lots of OCD and tics. When we take him out, his tics and OCD go away. When he first got sick he said, "I have got to get out of this house". That stuck with him. Also, I told him that he has got to talk and he said, "I am never talking again." I believe that the not talking and wanting to leave the house are major manifestations of OCD. He might not talk all week and then say, "Will you just get the apple juice." Or, "Wow, the moon looks really big." And then - that's it. He will touch my lips and say, "say words, Mommy". Dr. Latimer said he is trying to figure out how to get over his aphasia.

 

Never heard of that before...not talking...as a form of OCD? How old is he now? That must be so tough. It shows how there can be such extremes! And hear I can't get my child to be quiet.

[Kayanne]

My son is the opposite. When he is out shopping or out in the city or out to dinner - he is so calm and happy. If you take him out anywhere - he is happy. He loves sitting at restaurants in center city Philadelphia and people watching. He could sit there for hours at outdoor restaurant seating and be totally happy. He does not like being at home. He always wants to go out. We have taken him to fancy restaurants and he is as good as gold.

 

He lost his language at age five during his first and biggest pandas episode. He is still not talking much. He has lots of OCD and tics. When we take him out, his tics and OCD go away. When he first got sick he said, "I have got to get out of this house". That stuck with him. Also, I told him that he has got to talk and he said, "I am never talking again." I believe that the not talking and wanting to leave the house are major manifestations of OCD. He might not talk all week and then say, "Will you just get the apple juice." Or, "Wow, the moon looks really big." And then - that's it. He will touch my lips and say, "say words, Mommy". Dr. Latimer said he is trying to figure out how to get over his aphasia.

 

Never heard of that before...not talking...as a form of OCD? How old is he now? That must be so tough. It shows how there can be such extremes! And hear I can't get my child to be quiet.

 

It happened to my daughter too. She told us she thought she wasn't allowed to talk...and then something about a feeling in her throat.

[PhillyPA]

He is now 8 years old. Starting next week he will be getting high dose ivig (2gr) every 6 weeks for 6 months.