WornOutDad

We have had the full battery of tests run, and they have all come back inconclusive, in fact his immune system is in good shape according to the tests.

Do any of the other PANDAS children pick up every single bug that is out there? It appears like our DS(14) is covered with glue while at school and every single stinking illness sticks to him no matter what we do. So very frustrating! Once he has picked up any kind of bug, his head goes bonkers on him.

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. Thanks again, we will let him know there is a message for him on FB later today.

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.

I would also love to get my hands on the United Health Care bulletin. Aetna just rejected our level II appeal, nice!

We learned over the years through trial and error, mostly error on my behalf that restraint upon recommendation of DS's therapist made things much, much worse. This particular therapist was not a OCD expert much less a PANDAS expert and encouraged the restraint with the idea it would protect our DS and ourselves. As he has aged, now 14, it is practically impossible to restrain him when in a aggressive state. When and if attempted it just fuels the fire. There have been situations recently where I don't necessarily try to restrain him, but run blocker between him and my wife. Its more like he is a defensive end coming after my wife, the QB, for the sack and I am her offensive tackle.

We have fourth of July plans to visit some friends for the entire weekend. Our son is 18 days post IVIG and is on a steady course of antibiotics. The friends just called and said their daughter was diagnosed with strep yesterday and has been medicated for 24 hours and is feeling better. What should we do: 1) Not go at all 2) Go but stay outside of their home 3) Go and stay in their home Thanks

Thank you to all who have replied and given support and well wishes. DS overall had a pretty good weekend. We did have him on a nicely scheduled and detailed diet of steady entertainment that undoubtedly distracted him from the dark side. Time will tell, we remain hopeful!

Men and toilets...nothing else needs to be said.... It is pretty amazing how one can link a toilet to part of a conversation or an example. Sometimes you just have to go with what works!

Happy Mother's Day to the best moms in the world. Your children may not know how hard you fight for them, they may not appreciate how you worry about them, or realize how much strength and patience you have to endure the havoc this disorder brings to your lives. But you all deserve a parade in your honor with balloons, fireworks and unlimited candy thrown your way. I will be throwing you all a parade in my mind all day long!!!!

Has anyone successfully been able to get Aetna insurance coverage for IVIG, we have been declined coverage according to their IVIG policies that consider IVIG "experimental" for PANDAS treatment. If you had success would you consider sharing contacts at Aetna in a PM, thanks!

Thank you very much for sharing this information.

Thank you for your dedication and hard work.

Going nuts is probably underestimated. I'd only change one thing, the fantasy hospital should be on an island like the old fantasy island TV show. How about Hawaii!!!!!!!!!!!!!!!!!

Glad she's doing better tonight. I SO identify with the fear of watching it all come back and being terrified it won't go away. For me, it has been really painful to get glimpes (for us so far only hours or a day at best recently) of who I know my son is without this disorder, only to watch him seized by it again. But it's what makes me keep going...I'll be thinking of you - hope this was just a "blip" for her.

PANDASkid - thanks so much for your post. My son is 14, and just reading your post made me want to give you a big hug - I'm so sad you are going through this but please know you are not alone! I hope you can get that IVIG SOON and that it truly helps. My son has gained a lot of weight from Risperdal, and I know he hates it, along with all the other side effects. Keep us posted if you find anything that is helping you. wornoutmom, I was on Biaxin for ten days with no results. I have also been on zithromax for 3 months with no results and augmentin for 1 month also with no result. I got my blood tests back yesterday. I had "highly significant" levels of mycoplasma pneumoniae as well as an IgG 1 subclass deficiency. I also recieved my CamKinase II results back in November at the level of 200. The only relief I have had from my symptoms was from a 5 day burst of steroids and a month long course of steroids. I gained about 4 weeks of my life back but they wore off about 1 month ago and my life has gone down the toilet again. I dont want to go back on the steroids because the side affects are so awful. My stomache is now in a wreck from all the pills I've taken. I am now on tylenol-codine for my physical pain as well as advil. We're going for an IVIG but insurance has denied it, but hopefully since we found this subclass deficiency I can finally get it. Hope this helps. PANDASkid.

It's not that the school system is doing nothing for our son, they are, some more than others, others more than nothing and some just nothing. Its just become WornOutMoms second job of steering the boat continuously, there is no one at the school that has stepped up to lead the way utilizing his IEP. Very frustrating.

This is one of the only times I can think of where I want my sons test to come back positive, it would confirm so much and hopefully provide insurance covered treatment for him so that there is some relief after years of suffering. He has been fighting with the big-bad PANDAS bear for way too long.

BTW, Wornoutmom....this is very significant (and he may not respond as well to future steroid bursts). I am very curious as well???

Okay….I am really scratching my head about that! I would love to have been a fly on the wall to hear the entire context of this…and her intonations/facial expressions. As far as leaving the club…well, I think we all know that it is way too premature for you to be considering that…besides whether your son has PANDAS or not….everyone is welcome. Wornoutdad, Yes it is the same test...the terms can be inter-changed. I think if you want a longer trial of antibiotics or steroids, then Dr. T would probably be your next step. From reading this forum, and his website, I believe that Dr. K feels very strongly that IVIG is the treatment for PANDAS. I'm not sure, but I think Dr. T is more aggressive with antibiotics first. I hope this helps, and I am sorry you guys are having such a hard time right now. ~Karen Karen, thanks for the reply. We are not going to Pooh-Pooh anything that Dr. L has said and/or recommended, in fact we have already scheduled some procedures that will investigate the possibility of seizures.

Yes I did and we will take him up on the offer.

First and foremost a big THANK YOU out to all of you who have offered advice and hope to my wife "WornOutMom" and son through this forum. After yesterday's events with Dr. L I am as well very confused on where to turn next. Dr K will definitely be hearing from us! Quick question, is the Cunningham test and the Cam Kinase test one of the same out of OSU?? I still believe that our son would benefit highly from a long term dose of Zithro not Omnicef and a burst of steroids, but who and where do you turn to to get that implemented? Thanks again for all of the support.