***gimmietimm***

Re: ***gimmietimm***

• gimmietimmies member

  June 2012

  Hey! Short answer on ds' condition, not sure! Long answer is that they have tested him for nearly everything, from Guillame-Barre to cancer to you name it. The best they could come up with when he was a toddler was myositis, then later more specifically polymyositis. I've told them they've been wrong this whole time because they could never 100% confirm anything on any of their tests, the markers never fit. It's extremely rare that children are diagnosed PM, and those who do eventually go into remission and "outgrow" it. He never has.

  He had an another episode of what they call rhabdomyolosis in Nov 2010 (yeesh, with a newborn in the house), and the specialists called a round table because they finally heard dh and I, and ran more tests and pretty much concluded that PM was unlikely. Oddly, metabolics and genetics was not a specialty that we'd been referred to, but they piped up about CPT Type II (a mitochondrial disorder). So, long story short is, it matches, but they had to confirm via advance testing. So, note the original date, they`ve finally got the results back from England, and they set up a follow up with the clinic to go over the results (which I take it to be that they confirmed it, they don`t waste time on negative results). So, when you say your dd is an extreme case, I really get it. I wish I didn`t (for both of us!).

  So, add that to all the things that have happened to his body as a result of so many devistating episodes, he`s also had a kidney transplant at age 5, his kidneys were destroyed at 18 months. There`s way more to the picture, but I could write for hours. Hospitals stays? Lost count on how many. We've had some very long stays. Surgeries? More than 100, I'd have to ask, but at his last nephro clinic, the nurse and I wondered and started counting in the binder. We stopped at 100.

  Currently he's on a host of immunosuppresive drugs daily for both the transplant and the autoimmune/metabolic condition. He gets cellcept and tacrolimus, along with oral pred, and methotrexate. He's also on a few different pills for hypertension, and a round of vitamins because of the steroids. He had been on IVIG since the last episode, starting daily, then weekly, biweekly, then monthly, now after his last dose two weeks ago, he's finally down to every three months and then they've dropped the methylpred for now. And then we wait and see what happens next.

  Oh, and I can't agree more about the pred, it's horrible. The mood swings and temper tantrums and the puffiness are so hard on them at any age. And people suck too, they're rude, and to his face (I don't tolerate it, he calls them out). Which is why he's not in my siggy, it's easier than explaining (and really, should I have to - but you can't fight stupid all the time, it's not productive).

  I read more on your dd's condition, so autoimmune I'm familiar with! I hope she proves them wrong and it resolves itself. But be prepared in any case.

  I'll post a pic or two, his last stay. You can't tell in the hospital pick, but he is smiling. If you read through a bit of what rhabdo is, you'll see why it was a long stay. One day he was fine, the next he couldn't breathe on his own, walk or hold his head up. He spent that time recovering and doing physio.

  Report0 Reply
• Loading the player...
• gimmietimmies member

  June 2012

  

  This is L in ICU, off his CPAP for the afternoon. He was one week out of the "episode" here and couldn't move. That's his bear, he's been around for a while.

   

  

  Five months out - steroid cheeks! It has the same effect on the rest of him.

  

  And a few weeks ago. Cheeks are starting to go, he's lost 40 lbs since the "episode", he's done 10 since this pic. This is just before he hopped ont the swing that is just outside the pic. He hadn't been able to for quite some time, but he got on there like an old pro!

  Report0 Reply
• gimmietimmies member

  June 2012

  Sorry, didn't get to finish. I really feel for you, what you have to do with your dd. Are you having to take any precautions with her, like limited contact in public, care not to bump her so there aren't new bruises. Does the bruising/purpura appear on an ongoing basis? How about the IVIG treatments, are those frequent? Do they know if there is an underlying cause, given that she has an extreme case. It kills me not to know what's wrong, especially when they can't find the answers.

  I'm glad you said in your early post that you have support, it makes getting through long stays easier. My sounding board is another mom that has a dd with a myriad of problems. I'm so glad that she gets it, and tells me to breathe sometimes, and that I'm not nuts for challenging doctors.

  It occured to me last night how difficult it would be in your position, given that your health care system works off user pay/user insurance. IVIG is extremely expensive, so is the other treatments your dd uses (although this is covered here, I still know what things cost). I hope this isn't something you have to worry about, it had me worried for you last night, trying to fall asleep.

  Report0 Reply