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...
51313
kilpatrick_sandra
kilpatrick_s...
Jun 1, 2005 12:45 pm
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...
51314
kilpatrick_sandra
kilpatrick_s...
Jun 1, 2005 12:48 pm
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. ...
51315
kilpatrick_sandra
kilpatrick_s...
Jun 1, 2005 1:00 pm
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....
51316
kilpatrick_sandra
kilpatrick_s...
Jun 1, 2005 1:05 pm
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...
51317
Angels4hailee@...
haileesangels
Jun 1, 2005 1:08 pm
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.. ...
51318
ilikemonstertrucks
ilikemonster...
Jun 1, 2005 2:43 pm
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...
51319
Meagan Ochsner
tooge01
Jun 1, 2005 4:19 pm
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....
51320
Meagan Ochsner
tooge01
Jun 1, 2005 4:24 pm
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...
51321
Meagan Ochsner
tooge01
Jun 1, 2005 4:25 pm
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...
51322
Meagan Ochsner
tooge01
Jun 1, 2005 4:28 pm
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...
51323
Meagan Ochsner
tooge01
Jun 1, 2005 4:34 pm
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...
51324
Meagan Ochsner
tooge01
Jun 1, 2005 4:37 pm
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...
51325
Meagan Ochsner
tooge01
Jun 1, 2005 4:41 pm
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...
51326
kilpatrick_sandra
kilpatrick_s...
Jun 1, 2005 5:39 pm
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...
51327
kilpatrick_sandra
kilpatrick_s...
Jun 1, 2005 5:41 pm
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...
51328
karen brubaker
karenbrbkr
Jun 1, 2005 6:26 pm
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...
51329
VisibleWorship@...
worshiponlyhim
Jun 1, 2005 7:17 pm
In a message dated 6/1/2005 11:36:13 A.M. Central Standard Time, tooge01@... writes: How is True? What type of surgery did he have to have? they...
51330
Rebecca
deminiranch
Jun 1, 2005 9:39 pm
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...
51331
Darla Klein
honeybear50317
Jun 2, 2005 12:31 am
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...
51332
Darla Klein
honeybear50317
Jun 2, 2005 12:47 am
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...
51333
AReckling@...
anneashsam
Jun 2, 2005 12:48 am
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...
51334
Darla Klein
honeybear50317
Jun 2, 2005 12:59 am
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...
51335
Meagan Ochsner
tooge01
Jun 2, 2005 1:25 am
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...
51336
Meagan Ochsner
tooge01
Jun 2, 2005 1:28 am
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...
51337
Meagan Ochsner
tooge01
Jun 2, 2005 1:34 am
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...
51338
Brian Sorensen
sorehead@...
Jun 2, 2005 1:41 am
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...
51339
Angels4hailee@...
haileesangels
Jun 2, 2005 1:55 am
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 ...
51340
lennieismine
Jun 2, 2005 2:07 am
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...
51341
Sharon Goldin
lawblond7
Jun 2, 2005 2:16 am
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...
