Hope

[NVAmom]

Hi! I have not posted in a long time. I came across an article online about a family's struggle with PANDAS and it reminded me of this forum. In the early years (4 years ago) I checked this forum hourly. Hoping to find some nugget of information that would help us cope day to day and eventually bring healing.

 

A short background. My son first began displaying symptoms around 2 years old. My dtr around 18 months olds. Ds was diagnosed when he was 12. Dd when she was 9. It was a very difficult time. No sleep, lots of intense, scary arguments, refusal to go to school, fear of germs, separation anxiety, opposition defiance, insomnia, OCD, withdrawal from friends, refusing to leave the house.....the list goes on and on. I honestly have blocked the worst of it from my mind and only remember it when my husband or mom says....'remember the time...'

 

We have had to make MAJOR changes in our lives but it is so worth it now!!! My son is a happy teenager who actually will spend time with the family. My dtr is a happy preteen who lives to play with her friends. Our biggest problems now are typical sibling arguing....he called me a name....it's her turn to feed the dogs. A long way from not being able to leave either one unsupervised for fear they may hurt themsleves!

 

Here is a quick run down of our healing:

1) We have seen Dr L and Dr B. Both were helpful but Dr L brought long term healing

2) antibiotics started as soon as diganosed...helpful but still a long way from normal life

3) IVIG; son had 2 infusions - improvement with first lasted about 4-6 weeks; 2nd infusion- no help

4) IVIG; dtr had 1 infusion actually seemed to make things worse

5) plasmapheresis - HUGE; LIFE CHANGING; within 4-6 weeks AMAZING changes!!!

6) out of school 6 weeks after plasmapheresis ...THIS was KEY!!!

7) dd went back to school around 6 weeks...in 4 days MAJOR regression...removed from school, steroids

8) son never returned to school. Both finished the year on home bound status

9) following year we started homeschooling....BEST DECISION WE EVER MADE....without the repeated exposure to the daily germs at school they have been able to further heal. We do not keep them quarantined! They continue sports, see friends, attend extra curricula classes BUT these are all things we know kids are not going to if they are sick. Friends know if they are sick we can't get together, most people don't take kids to sports when their child is sick...same with extracurricular activities

 

I am writing this to give those of you in a dark, lonely place HOPE! We have our children again. Life is not perfect BUT I'll take this compared to 4 years ago ANY day. I thank God each day for the healing we have and pray we never return to that dark place again.

 

[Rachel]

So glad to hear this good news. My son is also home school due to immune issues. Still have a very longs ways to go with healing .Family and friends are very understnding. My son has not done any IVIG or PEX treatments yet but may in the future. WIshing you the best for healing and no more dark and loney days.

[ktdommer]

Thanks for posting! Glad things are looking up.

[MaryAW]

I home school my DD too. Best decision ever! She hasn't been sick in a year. We still do extracurricualr too. she is so happy, and definitely healing better without the stress of school.

[dasu]

Thanks for the rundown. It is so helpful to see long term high level assessments of treatment.

 

We live north of Charlottesville and have to kids ages 5 & 6 with PANDAS. Like you we see saw/see many of the same symptoms in our kids, finally go to Dr L and homeschool. We havent broached plasmapheresis or IVIG yet. I think we got into this mess because we used to regularly take our kids to our gym's child care facility where they would pull down many infections. Anyways, we havent broached ivig or plasmapheresis. My daughter is still quite fearful, has urinary frequency and emotional lability. Son is hyper, has some tics and anger.

 

You must have some good parent friends. Despite all the talk of "please tell me if your kids are sick..." we keep bumping into parents who, in the middle of some activity, starting tell us that their kid has some bug, but they had to get out of the house so they gave them some tylenol and here they are, playing with the kids.

 

Homeschooling is a challenge though with some of the issues they have displayed (hyperactivity, uncontrolled laughter, etc) We have learned that structure is key, and keeping them busy and focused on a task is essential to their well being.

[searching_for_help]

Yeah, around here many of the schools give "Perfect attendance" awards. DUMBEST. THING. EVER. I've heard 2 parents comment that their kids were puking in the night, but didn't want to miss out on their "perfect attendance" and went to school anyway. (And the parents said it like they were PROUD of their kids determination to go!) And we wonder why so many kids get sick at school...