bubbasmom

I really need help fighting with Anthem BCBS to get IVIG covered. The other two times we've done IVIG we had United Health Care. At least UHC acknowledges right in their policy that IVIG is the treatment of PANDAS. BCBS says its not. (they would only have to read my son's chart alone to see the evidence). But anyone with any input it would be appreciated!! email me

Can you give us a reference to what therepy you are using specifically?

As with everything else with PANDAS it's nice to know you are not alone. When I hear others describing things that sound just like my son it amazes me that I didn't catch PANDAS earlier in life of my son. I think the sitting by him at night is key I just don't like to because like some of you after I get my kids to sleep is MY time. So sitting with him for a couple of hours I always fall asleep. I guess this too shall pass (although sometimes that's hard to believe).

My son's first symptom to come and last to leave is a huge sleep disorder. If I would pay attention I would maybe have a bit of a heads-up to the onset of PANDAS each time. My son can't get to sleep at night and can't wake up in the mornings, even for fun stuff. During the height of PANDAS it's sometimes 4 or 5 am before he can fall asleep and 2 or 3 in the afternoon before I can wake him up. And when I say wake him up that means every 15 mins shaking him, yelling at him, doing all I can. Now that he's no longer in what I consider a full blown episode (better as of April) we still have big time sleep issues. This is the main reason he was partially home bound from school last year and I really want him back in regular classes this year. He went 4th hour last year. I saw on the mystery diagnoses clip about Sammy how he wouldn't sleep in his bed because of a stripe on his comforter. My son will not sleep in his room at all, hasn't since onset in September. But now that he's better and can talk to me about stuff, he still won't tell me why. Just says 'it's hot' (and I'll give him that, summer on our second floor is warm) but still it's an excuse. He sleeps on the couch on the first floor. We're in the 'do not disturb' phase of PANDAS where we are so relieved that things are going well we just don't want to mess with anything and we don't want to go to even one more doctor for fear of triggering something. Do you think a sleep doc could help? Anyone tried it?

He's on two kinds of antibiotics? I didn't know you could do that?

So much of what you describe sounds exactly like my son's PANDAS symptoms. Sleep disorder is his first one to show up and last to leave. Takes me 4 hours to wake him when he has PANDAS. On home bound for school because I can't wake him. He is verbally and physically abusive. Cannot hear me speaking to him unless I stand right in front of him and make eye contact first but even then can only process a couple of sentences. Lots of stomach /gut pain. The staring into space deal. Also no fever with strep ever. I would see how cooperative your regular pediatrician will be by seeing at least about STRONG antibiotics. Also Dr. K in Chicago, whom a lot of us see, has a website at webpediatrics.com I found that very helpful. If we knew what partbof the country you are in some would have doctors to recommend.

My son was partially homebound all of this past school year. It completely effected his friendships. He said "don't you know? I'm just the weird kid that never comes to school". I felt bad for him. However, what else are you going to do? At least he passed!

Am curious about strep on the skin being tested. How do they find it. Is the strep visible (such as a rash or sore) or do they just sort of do a random swab hoping they come up with something? We're not going thru this but have heard of it.

Not a sudden moment but in hind site I can just about point to the day. But we were so 'walking on eggshells' that we were afraid to let our guard down. Even now, I hesitate to talk about it too much. But I do think we can point to that time within a few days.

I'm bad with all the labs however I did ask an infectious disease doc about the IGg test and she said that goes up with any infection and takes a while to go back down. So if they had strep a fairly recent time ago could be that.

If you know anyone that has United healthcare that company specifically states on there website PROVEN TREATMENT FOR PANDAS. Someone on here told me about it and that's who we have. But maybe you could use that as a reference. Or maybe ask the company that makes whatever brand IVIG you're going to use to see a copy of their medical proof such as case studies.

I've had a lot of trouble getting doctors to agree on 'post IVIG titers'. My son had titers run just a few days after IVIG and they were high (1320 and like 800) but hematologist said it was the IVIG, ped said no way, lab said no way. UGH!! So we've just waited as well. I really want them done right now because this is the most normal my son has been since September and we need that base line. Just one more aspect of PANDAS that as parents we have to research it and figure it out on our own!! I think there should be some sort of 'medical degree' parents earn following PANDAS because we all research and learn so much!

We definitely had a pattern, it sometimes was worth the 'bad' moments to know that you had that moment of peace. We would sometimes have a DAY of peace, that was always nice. But weird how it became predictable. The bad never became predictable, but as you said the 'calm after the storm' was. But with rage begin my son's primary symptom we spent a lot of time evaluating what happened to trigger the rage. We kind of considered that his 'OCD'. It was a thing of life not happening the way his mind said it should happen (whether people didn't respond the way he thought they should or if situations didn't pan out) but it was about control sort of. He is 3 months post 2nd IVIG and is doing well. Seeing tiny little triggers every now and then. I'm not confident PANDAS is gone forever, but I sure am enjoying the break. I about lost my mind during all of this. Definitely PTSD for me after the PANDAS.

NO WAY WOULD I GO! It is soooooo not worth it! My son had IVIG 10/28, took 6weeks to recover (mid Dec) and ended up getting strep again 2/1 and we were absolutely at square one. Had to do IVIG again, took a few weeks again, went thru all the same symptoms again. We are very clear with people ANY sickness is a deal breaker for everything. We don't even go around people with sniffles. NO WAY.

You know my son has had strep at LEAST 3 times since September with a bought of PANDAS following each one. IVIG following two of the times, and recovery following IVIG both times. We're in a fairly good place. We were going to get his tonsils out as a 'preventative' from future strep, but I'M EXHAUSTED! And I'm not willing to risk surgery or anesthesia to trigger anything again. He's been good for just a month and a half now. I hope this doesn't come back to bite me, but you get to the point of almost 'unltimate walking on eggshells', you're just so happy to have a calm house again you really protect it.