Jump to content
ACN Latitudes Forums

Small victories and big victories in the momto2 household

momto2pandas
 Share

Recommended Posts

momto2pandas Rising Star

momto2pandas

Posted
Posted

Just a little update with some happy stuff.

 

We're almost 4 months out from their first IVIG, and I can't believe the great stuff we've seen. PANDAS has always been on the mild side, but we always used to have a bunch of the annoying stuff - sensory stuff, mood/shyness stuff, etc.

 

Below are some of the little victories that have made me happy. The big initial victories were 100% removal of tics and 100% removal of OCD symptoms, even in the face of infection. Moodiness is still there just a little bit on rare days - and came back quite a bit temporarily when we tried to go without antibiotics for 10 days - but I would put my kids squarely in the middle of the pack of their peers at this point as long as they stay on antibiotics. I would say that ds4 is even less moody than average among his non-PANDAS friends.

 

1) We went back-to-school shopping for the kids last week. This was the first time EVER that ds6 has been able to just pick out what he liked and wear it. He always had so much trouble with sock seams, rough denim-type cloth, cuffs, tags, etc. that no matter how much he liked "cool" clothes and shoes, he always wound up in sweats (top and bottom) and sandals. This year, I bought the styles he wanted to wear, and he is wearing all of it with no problem - even the socks and shoes! And a lot of it is rough, rugged denim-type fabrics.

 

2) No nighttime anxieties in either child at all. They were never a big deal - just liked to go to sleep in our bed to prevent "bad dreams" and then we'd lift them into their own beds when we went to bed - but now they just bed down in their own beds for the night on the first pass.

 

3) ds4 has made HUGE progress in reading and writing and drawing in such a short period of time, now that he doesn't get mirror-image confusion. He actually seems to enjoy reading words and spends a fair amount of time drawing and coloring for fun, which he never used to do.

 

4) Social anxiety/shyness gone even with unknown adults (this was the last frontier). If they want something at the counter (e.g. glass of water while we're out), they just look the server in the eye and ask for it. They place their own orders at restaurants. They maintain eye contact and speak when spoken to even with adults they don't know. They'll go on things they want to do (e.g. water slide, bouncy house) no matter how crowded it is or how many "big kids" are in there.

 

5) Ds4 is totally comprehensible verbally now that he doesn't have so many starts and stops (was kind of a tic thing). This seems to have really increased his social ability/confidence with peers. He tended to hang back from the pack just a tad before - he got frustrated at trying to make himself understood - but now he's eager to be with his friends all the time, speaks liberally, and can't wait for school to start.

 

6) Greatly improved athletic skills. Ds6 just got up on his bike with no training wheels and no anxiety about it...both made a lot of progress with swimming and jumping off the diving board... and many other things like that.

 

7) Digestive issues and food sensitivities gone. Daily, normal, pain-free pooping. Joy!

 

I've enjoyed them so much over the summer that I'm really going to miss them when they go back to school next week...and I'm not worried about how they'll be at school, at all...

 

Just thought I'd share a bit of happy news. My husband and I were moaning over insurance hassles and out of pocket costs for the year the other day, and then it occured to us that what we had gained was priceless....

norcalmom Mentor

norcalmom

Posted
Posted

Thank you for sharing your ivig experience. Please check in often to remind us there is hope, and balance out the forum with some kids that are in full remission!

And...congratulations! I'm so happy for all of you.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
×
×
  • Create New...