Wow! DS5's school is so proactive about PANDAS!

[Stephanie2]

Such a roller coaster this week. Both kids not doing well. I had to take my 2yo to the ER yesterday with severe hives over 50% of his body, including his tongue, eyes, nose, ears you name it! I was so scared his throat was going to close, I threw the kids in the car (DH was not home, as usual when the bleep hits the fan around here) in their PJ's, DS5 had a panic attack when he saw DS2's face all broken out and swollen. Got to the ER and they gave him a steroid which relieved him about 45 min. later. Question: does anyone know if IVIG would help urticaria? I have been on the fence about IVIG for DS2 and maybe this would be another reason to do it?

 

But to my surprise today, DS5's school called (first the nurse and then the guidance counselor). They caught wind of the PANDAS diagnosis (I think the pediatrician wrote it down on the health form) and they wanted more info about it. They also PROACTIVELY decided to send a note home to the parents in his class to inform them that a child in their class has a severe reaction to strep, and asked them to inform the school nurse if anyone's child gets strep! This was signed by the principal. They also called for a 504 meeting so that if I have to ever keep him home for an extended period of time then our butts will be covered.

 

I really did not intend to open "pandora's box" with the school regarding pandas due to all the horror stories I have heard on this forum, but they came to me with this and I am just going along with it since they are being so proactive and helpful. I guess we will see if they feel the same way if my child ever starts to have behavioral issues!

 

BTW, in the midst of all my stress this week, I stopped several times to marvel at the fact that despite the fact that DS5 is not anywhere near his best right now, I can't believe how much he loves his school and how the teacher has sent home nothing but good reports (Ok it's only been a total of 7 school days, but still...). I feel like it is a constant, daily battle to keep things running smoothly at school, and boy do I pay the price for his ability to function at school b/c he comes home every day at 2:30 and the meltdown (sometimes violent) begins. All the stress of holding himself together just comes out in one big heap on mom. I am fried!

 

I guess this post is about nothing specific, just a roller coaster I had to get off my chest!!

[kimballot]

Stephanie -

 

You had mentioned in an earlier post that things were not going well... so I am happy to hear that at least school is falling into place. I do not know anything about IVIG and uticaria, but would love to hear about it when you find out.

 

Wishing you all best!

[mkur]

This doctor mentions urticaria and IVIG on his website:

http://www.allergy-clinic.co.uk/skin-allergy/urticaria/

 

Good luck

[saidie10]

Sorry you have had such a rough week but there is a glimmer of something good with the school and how DS5 is doing there! I totally know what you mean though about holding all together and then falling apart at home...my life to a T right now with post IVIG DS7

[Jengels]

I feel your pain, the after school meltdown is so hard. Your in our thoughts today. My son came home and cried for almost two hours, goin g from crying to anger and back again. He also loves his teachers this year and the school for the first time is being cooperative. I had tears of gratitude at our 504 mtg this morning. It was like the first time they showed any kind of compassion and took our situation seriously. Last year was a nightmare because we didnt have a diagnosis and his teacher was a screamer (just awful). She thought he was just doing some of the things on purpose (even though we have numerous conferences about ds's tics and behavior). Anyway, that was last year and this is today. Today the school cared and for that i am grateful and somewhat optimistic. Thanks for your post and Best wishes at your mtg!

[forjpj]

So happy the school is helping out!! I have good luck with my son's school, and I feel so blessed!! It helps make up for all the other places I do have to struggle!! Hope things keep progressing!!

Sarah

[Fixit]

havent't read the posts...

but i am sorry you are going through this..essentially alone...

dh just took new job past monday..and though we may have a smidge more coming in and ins is CIGNA YAYA!!!!

i too will be alone again during the week....fighting about homework, bedtime, dinner, snacks, drinks, friends,clothes, chores,sibling fighting, crying,,,terrible.....

 

It is awesome about the school...that will be huge and be really good for you going forward!!!!!

 

Hang tuff steph!!!

[momto2pandas]

I think the news about the school is great, both for you/your child, and also in terms of raising awareness, which will probably end up benefitting other kids down the line.

 

We haven't needed any kind of special treatment at our kids' schools since PANDAS was always mild and not disruptive, but we've also had great reactions from teachers, administration, etc. They've been able to go with the flow and have always been extremely sympathetic, even reporting back to us excitedly when "the light bulb went back on today!" at school (before a few months ago, ds6 had only about 2-3 very discrete episodes per year, where he clearly "checked out" one day and then "checked back in" a couple of weeks later). And everyone has been very interested in learning more about it. Ds6's first grade teacher even asked if I could talk to the parent of another child in her class about it, because after learning about it, she thought he might have it too. I figure that with everyone involved in childcare/schooling that we educate, more cases are likely to be detected and treated - both with medicine and with compassion...and that's a great thing.

 

I do have to wonder, though, if we'd be getting the same positive reaction if my kids had been "externalizing" more than "internalizing". My kids don't have verbal tics, large motor tics, aggressive behavior at school, etc. - at school they just get spaced out, disengaged, and inattentive when they're not feeling well. I'm guessing that kids who act out more, though no more at fault, may not get as sympathetic a reaction.

[tpotter]

Wow. I'm am SOOOO impressed with your school. Why can't my school do that, even after 3 years of Due Process that finally resulted in a settlement agreement, and now they're starting it all over again!!! I am really, really happy for you (even if I am a bit jealous!)

[Doug]

My DD6 school is AWESOME,they wanted all the info on PANDAS

and they have a plan in place to let me know when strep starts

to hit.

Her teacher is so good,she will let me know when the kids start to get sick in the class.

we will see..she has went for 3 day's but she did GREAT

 

Tracie