we are losing the battle

[wornoutmom]

Emerson - feel free to send him a private facebook message. I'm sure he could use a teen to talk to where he doesn't feel the need to cover it all up. I know he thought it was cool last time you guys chatted via FB. If you have time I'll try to get him on to FB tonight to check. Thanks kiddo! You rock!

 

Highschool's not easy & we P.A.N.D.A.S. kids definitely get the short end of the stick as far as just how freaky freshman year is, if you ask me. The first semester of mine was absolute H###.

I don't have time to say as much as I would like to but it WILL get better!! I know you said he is nonverbal but I would talk to him if he'd be willing to. I've talked to a lot of the kids on here. Just a thought. I hope you start seeing improvement soon!!! <3

[norcalmom]

I'm soo sorry. We are 7 weeks post ivig, and I won't even allow myself to think things are better - to have hope crushed after all that work must be agonizing for both of you...

 

I have read that many kids (because they are certain doctors patient) are getting two and three ivig's right away, without even seeing full results of first ivig. After Lyme testing, maybe you would get more benefits from another? Even Dr K does more than one in over 20% of the cases(this is what he verbally told mein chicago), even though he generally thinks one is enough. I don't know if there is any correlation to the age, or duration of illness, to when they need another. It sounds like he still has some underlying infection or immunity issues.

 

I just got a cunningham kit (arrived today) I'm happy to send to you if you want to check his levels, pm me and I will fed-ex to you (since regular channels take a week or two). I haven't PAID for the test, I just have the kit waiting for the day that inevitible cold/flu arrives. I wish I could help you and your son in some way. Thinking of you

[Joan Pandas Mom]

I haven't talked to the school yet. I kept him home yesterday and today and have to line up an apt. with them. I don't know how it is all going to work out. I think I might try to home school for a while, maybe try to hire a tutor. He wants to try a few classes a day, but I don't see how that is going to be possible. Have you thought about another IVIG? I think we are going to try at least 2 more. It seems most of the kids here that have gotten better had at least 3. The therapy and writing he did over the summer helped for a few weeks. He stopped writing about day 2 when we returned. I think between stopping the exposure response prevention therapy and school, it just put him over the edge. My heart and prayers go out to you and your family and so many here. Please keep us posted.

[tpotter]

I am so sorry for you, but do have a suggestion that might help. First, outline everything you wrote below...break it up into before and after IVIG, and then what just happened.

 

Is insurance paying for the IVIG? If not fight them. JayJay just got the CT State Insurance Commission to overturn her insurance company's denial for PANDAS. I just had a 2nd level appeal today for our insurance, but we are going in as immune deficient. I don't know how it will turn out, but if they deny it we have an excellent case on our hands, because I documented how many absences my boys had, number of doctors' visits, dignoses (which were all strep and/or bacterial), and essentially proved that they couldn't fight off infection. That's what your documentation above will show. Plus, if your insurance is like mine, in order to get anymore IVIG's (after the first), you have to document improvement (I read the "rules" in detail last night.)

 

It certainly sounds like IVIG works, but you very well may need more than one. If you haven't been seen by an immunologist, I would HIGHLY recommend that you do (we were seen a group of immunologists, and they didn't know anything about what to look for, like Dr. B. did...it's more complicated than regular immunologists know...they go by the book, and don't add up all the pieces.

 

PM me, I might be able to give you some more advice (even though I'm currently fighting insurance, too), but I also have a child just entering HS, and another just finishing h.s., and both have had PANDAS a very long time. It is different for us than for the younger children who have just been diagnosed (nothing personal...just a different picture altogether.)

 

I'll pray for him. I totally understand what you're going through, because we've totally been there (and still are at times.)

[matis_mom]

I am so sorry! It so hard to watch them suffer. Our son too experienced some relief writing down the thoughts that were causing him anguish.

Have you tried steroids? Are you giving him anything for inflammation?

 

About the school thing, yes, it's important, and it's high school, but really, in the whole scheme of things, is it such a big deal if he misses a year?

What about homeschooling? Did you ever consider that? It's not easy, but there are many programs out there to make it pretty simple for mom (maybe take a look at k12, it's mostly on line and many states will pay for it.)

 

Also, do you know if he has any food allergies. I put my son on a grain, sugar, and lactose-free diet, and he is doing much better, in spite of the fact that his siblings and I had strep last week.

 

About Lyme... we had had ds tested several times last year. I was wondering if I should go ahead and do Igenex. Well, it turns out now, after a year on antibiotics his Western Blot (through Labcorp) is showing 4 bands positive. He did have 3 steroid tapers, the first one of which helped him tremendously, so even if you are still thinking he might have LD, I would try steroids to get him out of the whole he is in right now, I can't imagine things getting any worse!

 

Keep us posted and stay hopeful, he will get better. He will.

[Topaz1968]

I am so sorry you are going through this. I hope this is just a bump in the road and things get better for you. I know how hard it is to see your child think he is a freak. You always want them to be able to enjoy life. My heart goes out to you and your family.

[wornoutmom]

norcalmom - thanks for the offer on the camkinase kit. I don't really feel like we need to do it again right now. We know somethings up. His number last april was 168.

 

tpotter - insurance did not cover the first IVIG and we're not really in the position to pay for another one, but if things don't get better we may have little choice. We're in the "external review' request stage. Next is getting our HR involved and possibly the state insurance commission but that all takes time, and quite frankly, energy I don't have right now.

 

mati's mom - he's getting 1800 mg motrin. we're waiting on the steroids for a few more days. Dr wants to do 30 day taper instead of burst. For some reason that scares me. He did the burst before and it caused quite a bit of diziness and headache. He does not want to be homeschooled. He just wants to be able to go to school! He met with the counselor today at the school and is supposed to try to go to 1 class tomorrow, but he's still freaked out about it.

[melanie]

1800 mg advil per day? How do you break that up? Were using celebrex

 

Melanie

[Fixit]

norcalmom - thanks for the offer on the camkinase kit. I don't really feel like we need to do it again right now. We know somethings up. His number last april was 168.

 

tpotter - insurance did not cover the first IVIG and we're not really in the position to pay for another one, but if things don't get better we may have little choice. We're in the "external review' request stage. Next is getting our HR involved and possibly the state insurance commission but that all takes time, and quite frankly, energy I don't have right now.

 

mati's mom - he's getting 1800 mg motrin. we're waiting on the steroids for a few more days. Dr wants to do 30 day taper instead of burst. For some reason that scares me. He did the burst before and it caused quite a bit of diziness and headache. He does not want to be homeschooled. He just wants to be able to go to school! He met with the counselor today at the school and is supposed to try to go to 1 class tomorrow, but he's still freaked out about it.

 

ds worsened orignally on burst then we had a gift of 4 days, 3 weeks later...

 

by the time we did the taper we had been on several abx long term off and on ..which i think is crucial in these kids...and even though the majority of his trigger may have been gone already.. maybe he had other subclinialc struff going on..

the other big thing to watch is yeast with steroids..and maybe that was the headache....

 

i would need convinceing to do a burst again...as to why that would be better than a taper.....the taper was so great....and i think may give the possiblity for a holding effect.....where as with the burst you a more likely to get a rebound effect...like a rubberbands and snaps back exactly like it was or worse for a while....

 

just our experience...

[EmersonAilidh]

WornOutMom ~ I am SO sorry, I'm horrible remembering which kid goes with which Mom. I will certainly send a message Carter's way once I get the chance. We chatted a bit about how his freshman year was going but he didn't let on that it was going so badly. :/ I'll do my best to help!

[dcmom]

Wornout mom- the taper has given my two girls immediate longer term relief- you might want to give it another try...

[kimballot]

I am so sorry to hear about this bad turn for your son and family. what a horrible way to start high school. You talk several times about him feeling sick and looking like crap. I hope you can find out what is making him sick. Tpotter had some good ideas bout finding the underlying infection. I know you will be able to get through this. You have been steering the ship for so long and you can steer it through these rough waters. My hope is that your son remembers little of this when he is feeling better again. Please let us know how things go.

[wornoutmom]

1800 mg advil per day? How do you break that up? Were using celebrex

 

Melanie

 

 

600 mg 3x a day. Celbrex? That's a new one by me!

[WornOutDad]

WornOutMom ~ I am SO sorry, I'm horrible remembering which kid goes with which Mom. I will certainly send a message Carter's way once I get the chance. We chatted a bit about how his freshman year was going but he didn't let on that it was going so badly. :/ I'll do my best to help!

 

Emerson, it is the little things like this that go a very long way in the road to overcoming an exacerbation, thank you very much even for thinking about doing this! Well Mr. C made it to Algebra this morning without having a panic attack!!!! He did get anxious but being in the moment for a hour and a half was a huge step forward, every day is a whole new adventure however, all of my fingers, toes, arms and legs are crossed hoping for slow steady recovery.

 

I described this situation to a co-worker this morning in that every time he falls flat from a PANDAS bear attack it is kind of like rehabilitating him from a brain injury after an accident, his entire thought process is stunted and needs gradual coaching and conditioning to get it back to where it was before.

 

I agree with the many comments regarding finding and ridding him of the current infection. He had blood work done two weeks ago and the Myco P level was still elevated.

[EmersonAilidh]

WornOutMom ~ I am SO sorry, I'm horrible remembering which kid goes with which Mom. I will certainly send a message Carter's way once I get the chance. We chatted a bit about how his freshman year was going but he didn't let on that it was going so badly. :/ I'll do my best to help!

 

Emerson, it is the little things like this that go a very long way in the road to overcoming an exacerbation, thank you very much even for thinking about doing this! Well Mr. C made it to Algebra this morning without having a panic attack!!!! He did get anxious but being in the moment for a hour and a half was a huge step forward, every day is a whole new adventure however, all of my fingers, toes, arms and legs are crossed hoping for slow steady recovery.

 

I described this situation to a co-worker this morning in that every time he falls flat from a PANDAS bear attack it is kind of like rehabilitating him from a brain injury after an accident, his entire thought process is stunted and needs gradual coaching and conditioning to get it back to where it was before.

 

I agree with the many comments regarding finding and ridding him of the current infection. He had blood work done two weeks ago and the Myco P level was still elevated.

 

It's always refreshing to see Dads on here.

 

I sent your son a message a little earlier today, just assuring him that while although I could never say that I knew how he felt because I wasn't him, I had been through the second worst exacerbation of my life in my first semester of freshman year. If stress kicks open the BBB just like an active infection, freshman year must just break it down. Not to mention if you ALSO have an infection!! I got strep more than once that semester & swineflu as well, & you say C might have come down with something.. As if ninth grade isn't already full of enough anxiety & nervousness.. Adding P.A.N.D.A.S. & possible infection on top of that certainly does NOT help any. The only thing that I can recommend for now is just to try to get him to relax, as impossible as that sounds. If you want me to send you the message that I sent him I will. He hasn't replied yet.