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Everything posted by bubbasmom

  1. 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
  2. Can you give us a reference to what therepy you are using specifically?
  3. 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).
  4. 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?
  5. He's on two kinds of antibiotics? I didn't know you could do that?
  6. 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.
  7. 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!
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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!
  13. 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.
  14. 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.
  15. 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.
  16. BE CAREFUL, EVERYTIME MY KIDS HAVE EVER GOTTEN PINK EYE THEY'VE GOTTEN STREP!!!! I'm sure its a different bacteria everytime. Pink Eye is a very generaly term, I'm just giving you the heads up that sometimes whatever bacteria my kids get drains into their throat and end up with strep. I do too actually.
  17. My son, 13, had IVIG twice. Once in October once in March. Both times, following the final dose he got the HUGE headache and threw up several times. He was most certainly well hydrated so that was not the cause. But he does tend to get migraines anyway and when they are bad he throws up anyway so we just thought he was rather prone to this type of reaction. I am very curious about this BBB because he has gotten migraines since he was 6 and Dr. K thinks he has had PANDAS since he was maybe 4. Wow, there's a whole other can o' worms to dive into!! But I have always wondered if his migraines have had anything to do with PANDAS. That's why this forum is great because we all feed off of each other and just by sharing we help each other heal our own kids!!
  18. It has to do with the child's size, I do know that. But also wanted to point out that here in St. Louis we went to a hematologist's office which happens to be a cancer treatment center. Done in a setting that is very UNLIKE a medical facility even though it is. We started off in a room that resembled a pediatrician's treatment room. That was just to get everything started. But then he was free to roam the facility where they had video games, snacks, tables and chairs, Wii, air hockey. And he was in his street clothes the whole time, so less stressful.
  19. My issues with IVIG are not so much how long afterward do you see full recovery. Its the fact that both times my son has had IVIG he has actually gotten WORSE immediately following for about 3 weeks the first time, 2 weeks the second. The first time 'full' recovery took about 6 weeks, the second time only less that 3 weeks before we were good to go. So confusing to everyone and I think its so different for every child. Just like with a cold, some kids get different symptoms, and different meds work for different people. PANDAS varies so much. GOOD LUCK.
  20. In St. Louis we were able to find a hemotologist at a cancer treatment center to do IVIG. They do chemo infusions all the time for kids. There's no 'gowns' not like a hospital or anythng. They stay in their street clothes, get it started then roam around this amazing place full of video games, arts and crafts, video games, eat, drink, one had their birthday party there while getting infused! Much more relaxed atmosphere, made it very easy on my son. He just pushed his IV pole around whereever.
  21. I just added this response to a different post as well, my son's first DOCUMENTED episode of PANDAS was cured by only antibiotics. And I will say, even though he was on 3 different antibiotics, once he got on the one that cured his strep, it was only a matter of 48 hours before symptoms began to go away. You follow me? The first two antibiotics didn't cure the strep, therefore didn't change the PANDAS symptoms. But the 3rd cured the strep, therefore the PANDAS stuff went away. HOWEVER...... that was 2007. fast forward to Sept. 2009, where we did every antibiotic my doc was willing to give (5 or 6) IVIG was the ONLY THING that worked. Much better in December. Got strep again in February, got IVIG again in March and apparently we're good to go. Not only did we have many antibiotics, we had to do Risperadal for violence, Zoloft to keep depression like stuff under control and Concerta to help with the learning that completely shut down. Same kid, two (or three) episodes, totallyl different treatments. Go figure!!!
  22. My son's first encounter was 'cured' with only antibiotics. Took 3 rounds of 3 different kinds but none-the-less it did the job, that was 2007. HOWEVER, got a bad episode again in September 2009 which was totally different, much much worse and required much more including IVIG. Not only that, after clearing up in December, he got strep again in February and March 22nd had to do a second IVIG. We're good now, but totally walk on egg shells. You'd think they're was a nuclear holicost anytime hear of strep. We all go into panic mode!! Also, Sammy, from the book saving Sammy only had antibiotics (and maybe a mood stabelizer) but no IVIG. Go figure.
  23. My son had IVIG the end of October. We saw vast improvement at 4 weeks, and at 6 weeks we really felt we were done. Then the first of February he got strep again. March 22 had his 2nd IVIG. By mid April, so only like 3 weeks out, we saw all signs of it disappear. So its tough, but I really do feel like it worked and the only reason we had to do it twice was a reinfection of strep. Hang in there. And don't forget to take care of YOU!!!
  24. I've never done the Cam tests on my son but we do have his strep titers done, and we NEVER have positive cultures and never have typical symptoms of strep, yet my son's strep titers are 720 for one and 1360 for the other (ASO and ANTI DNAS) is what I'm referring to. YOU KNOW YOUR KID!!! If you think there's strep, change doctors, whatever, don't take no for an answer!!
  25. We too went right back into the exaberation following IVIG. Its horrible, frustrating, and makes you feel so defeated. You're like 'I just paid all this money, got the treatment that doctors recommended, NOW look at him, back to square one'! But I will say my son's stuff lasted a much shorter time period this time. It was like a 6 week deal after his first IVIG, about a 3 week deal after his second. His titers are still around 1320 though which is 3 times higher than his original exaberation back in September. Hang in there. TAKE CARE OF YOU somehow during this. My husband and I just had this conversation last night. I told him, "I'm not even the same person I was 6 months ago. PANDAS has changed me, changed my son, and changed my whole family". Its like post traumatic stess syndrome. BIG HUGS!!! Denna
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