Need some encouraging words

[sarojane]

So we are about 7 days away from our Igenex lyme/bart/bans test results for my dd.

Over the past 9 months she has had 11 cases of tonsillitis and PANS/PANDAS. We would of had her get a tonsillectomy months ago, but now we have heard from llmd that getting a tonsillectomy when you have lyme and coinfections you run the risk over more neurological infection.

Even if the test comes back neg, there is still a chance she has it. How are you even supposed to decide what to do?

 

We moved to a different state 3 years ago and now that our DD is so sick and probably because I have been open about it, "friends" of ours and our daughter have stayed their distance. No phone calls, no invitations, ignored texts etc.

 

I have had to homeschool this year to try to keep her well and so that she can catch up from last year. All of this is so horrible and isolating. I just want my kid to be able to be healthy.

[LNN]

I'm sorry. I understand. My DD (non Pandas) has been constantly sick from mold exposure at school and we just decided to homeschool to get her healthy. There's a FB group for Pandas parents who homeschool - called Homeschooling Pandas.

 

Maybe your LLMD is right that T&A could cause problems, but so can leaving a chronic source of infection in place. It's like knowing there's a thorn in the lion's paw and leaving it there because taking it out might cause problems. Well, so does leaving it there. If her tonsils are chronically infected, the immune system is becoming exhausted from having to battle both strep and (potentially) lyme. It eventually loses the war. I'd get them out. A T&A helped my Pandas/Lyme son with no negatives.

[mama2alex]

Hi sarojane, I'm really sorry to hear that your friends haven't stuck by you through this. I think many people see this as mental illness no matter how much you explain it to them, and it scares them. It's just ignorance and not a reflection on you at all. It can be really helpful to try to connect with other PANDAS/PANS (and Lyme, if that's the case) parents in your area. When I talk to friends who've also dealt with this, I don't have to worry about what I say or how they will judge us. I can be totally open and supported, and that has really saved me. Hang in there and keep asking for help and support when you need it.

[dasu]

PANDAS is a devastating disease on kids and parents. We have been in similar straights barely holding down a job, paying bills, keeping home and body clean and cooking. There were months we hardly left the house, so yes its isolating. Between not being able to do typical activities, peoples judgements and protocols for isolation from sick kids, everyone loses friends.

 

I think its good you are open. You know who your friends arent. It is sad that it is so hard to find and make friends, we - the PANDAS community and really everyone - needs to do a better job of coming together, educating and supporting. There are a few PANDAS families we know who have gone through the illness and recovered but refuse to talk about it, they want to leave the bad memories behind. I can understand on one level, but am super frustrated.

 

Are there any approachable and open homeschooling moms? Most of them are busy crafting the perfect home and their perfect kids. Kids and behavior (yes thats our kids) that gets in the way get the cold shoulder. They may say they are understanding but really don't care, they mainly want to post pictures on facebook of their wonderful adventures, their kids artwork, their music etc.

Edited September 21, 2015 by dasu