Hey there I know Gaige isn't a mito kid but some of you guys who are dealing with this can help me I think. Actually he's being tested for MCAD and some...
I am glad to hear that you have done well with it. How long did it take to work? (the meds that is ) It seems like this is on me all of the sudden , but as I...
Thank you Karen. Sandra ... seizure thing is and having to medicate them. Justin has never taken the phenobarbitol so I don't know much about that drug. ...
Joshua has only regressed a few times and nothing was really major, he got it all back, somewhat. Follow your gut, and bug the tar out of them if you have to....
Thank you. He is still having some , they told me that he had to get to a certain level?????? before they would prob be controlled. He had some more last night...
hailee doesss that with her sugars also, she can run at 20 and still bounce off the walls.. she has endocrine issues that result to her sugar issues.. ...
Brandon and I both do that with our sugars... Brandon has been as low as 42 and as high as 220 inside the same 3 hours... all I know about hypoglycemia is...
Donna, Thanks so much. The kleenex helps. Today is some better for me. I just know something is going on with her. We're going to the doc this afternoon....
Melissa, Sorry to hear Hailee is so weak and having a hard time. Maybe there is something in the air. Sophie has been really wobbly, irritable and falling it...
Karen, Thanks for the hugs and the kleenex. I think I may have used all I had in the house last night. karen brubaker <karenbrbkr@...> wrote: Meagan, I...
Marie, Thank you for sharing. How proud you must be of your boys. mswims2007 <mswims2007@...> wrote: I have not been on the site for awhile. We had a...
I don't have any real advice about the blood sugar. I can just draw from a good friend of mine who is insulin dependent diabetic. Her sugar would drop real...
Sandra, I was wanting to ask you about the cheeks twitching. Sophies will do what we call the wave or quiver. We have also felt this same type of muscle...
She'll have her weekly PT today. I know the last couple of weeks her PT has had a hard time getting her to do things she used to do. I haven't had labs...
They do sound similar to Joshua, his are in his sleep as well. And he does do the wave or whatever you call it. I am really just learning about all this since...
I dont know if it was coincidence or what but the 2nd 3rd and 4th time Joshua was in the hospital he cut teeth, 2 the on the second and third stay and 4 on the...
Hi Deb, Did they check his liver and pancreas function too? Probably, the reason I ask is that when Justin started having the episodes of hypoglycemia his...
Sandra, My Jason had IS szs, and his phenobarb only worked for the tonic-clonic (grandmals), he was on steriods I think to help, but his szs changed and...
Sorry this has all happened so suddenly. I guess if it had to happen though, what a perfect place to be. It sounds like you have a good pediatrician and...
Sad to hear how weak Hailee has been... Is her weakness from her oncology treatment plan or from Mito related issues? Give her an extra snuggle from us on...
Hi, Does anyone else or their child have chronically low lymphocyte levels? Asher had an immunological workup (because of the mitochondrial disease and b/c I...
Have a good cry. Some of us will probably join you. I hate to watch our kids be so fatigued and know that this disease is robbing them of the ability to do...
I am right there with you feeling the frustration of not knowing anything. I'm also waiting on docs to call back (why does it always take so long?) I hope he...
That does seem kinda strange. Took Sophie to the ped this afternoon and they said a lot of what she's doing sounds like exactly what they hear from other moms...
Deb, What a tough surgery for a baby! I hope the fever goes away and he continues to heal quickly from such a big operation. I will continue to pray for him...
Some times people; especially family members may not know how to handle these situations. Especially if they hear from you how things have been going. May be...
Brian Sorensen
sorehead@...
Jun 2, 2005 1:41 am
51339
Regarding the weakness, we dont know... boyfriend is a pa and he thinks the mito... school is out and we live in our pool or at the water park, so who ...
Hi, I have 2 Diabetic kids and can explain some of this. With Hypoglycemia your pancreas usually overreacts to carb intake and your blood sugars swing...
I got a call from a friend of a friend in NY looking for the name and number for a top neurologist in NYC for their child - I do not know why - and the child...
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