Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 My daughter Saskia has the genetic form of PMG it is on both sides. The PMG is more on the left side than the right though which affects her right side of the body. Saskia is now six and nearly died through lack of appropriate knowledge of the different types of epilepsy that PMG children can have. Saskias meds now entail: Clobazam, Sodium Valporate and ethosuximide, but taken in excess it can cause organ failure if not taking enough seizures can take over and cause scissoring of the legs. All this happened to Saskia back in July. Thankfully her epilepsy is now under control, but it took an age to assertain what type of seizures she had they change all the time! We reside in the UK so luckily the testing was for free. I have heard that the German Doctor is really good and that also the Walsh Laboratory would be able to test for free. Good luck as the journey of discovery is hard xxx All the best mother of Saskia aged 6 also mother of aged 14, Hannah aged 13 and Skye aged 8 --- polymicrogyria wrote: > There are 7 messages in this issue. > > Topics in this digest: > > 1. T Shirts I made for (personalized) > From: " Charlotte, 's Ganny " > > 2. Re: helpless!!!! > > 3. Re: helpless!!!! > > 4. Helpless! > From: Sharon > > 5. My Sammi > > 6. Ganny's Lite Gait Trainer. (A great idea if > you can't afford one) > From: " Charlotte, 's Ganny " > > 7. Re: GPR56 Gene Mutation > From: pat oneill > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Wed, 11 Jan 2006 12:47:57 -0800 (PST) > From: " Charlotte, 's Ganny " > > Subject: T Shirts I made for (personalized) > > I made a few tshirts I wanted to show you all. It's > on his website. THe say what I want to say but have > a hard time doing!!! > Charlotte > http://www.littleoddyssey.blogspot.com > > > > > To read more about please visit: > > http://littleoddyssey.blogspot.com/ > > > > > > > > > > > > > > > > > > > > > > > > --------------------------------- > Yahoo! Photos – Showcase holiday pictures in > hardcover > Photo Books. You design it and we’ll bind it! > > [Non-text portions of this message have been > removed] > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Wed, 11 Jan 2006 14:12:39 -0800 (PST) > > Subject: Re: helpless!!!! > > KRISTIE HI MY NAME IS LISA MY SON, JEREMY HAS PMG > AND HAD THOSE SAME PROBLEMS AT THAT AGE HE IS NOW 8 > AND DOING BETTER THAN HE WAS BUT NOT THE BEST I JUST > WANTED TO SAY KEEP YOUR HEAD UP AND BE HOPEFULL. > THERE WILL ALWAYS BE BAD DAYS FOR HER BUT BE > GREATFUL FOR THE GOOD ONES YOUR POSTIVE ENERGY WILL > BRING HER UP. I FOUND THAT ONLY BEING POSITIVE AND > SHOWING LOTS OF LOVE IS THE BEST HEALER. LISA > > kristie4girls wrote: I > Know that this has probably been discussed before if > even by me but > things are getting worse. > na is 5 years old with PMG. She does not talk > or walk. She takes > pediasure by a bottle and does spoon feed a little. > na is on > clonidine for sleep, singulair, and now busbar. They > put her on busbar > because she has started to cry a lot. It was just > when we would do > something that might be sensory to her and now it is > almost all the > time. You can not sooth her when she is like this. > Her neuro does not > know what to do other than possibly trying depakote > to see if that wont > help. Has anyone else had this problem? Is there a > Dr. that > speacializes in meds or anything that can at least > explain why she > might be doing this? I am at my wits end. I feel > helpless. Has anyone > else been through this? > She now looks tiered all the time like she has no > energy. She has > been on the clonidine for over a year so I would not > think that would > be it. Any suggestions? > > Kristie > > > > > > Quote Link to comment Share on other sites More sharing options...
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