Hello, I just need someone to listen to me; I want to ask advice, but I don't know what to ask. My former PCP left town without notice..no letter, nothing;...
Clcr100@...
Feb 1, 2003 10:32 am
26767
jpro144093@...
Feb 1, 2003 1:38 pm
26768
Hi Thanks for sharing this with us...I am so sorry for what you are going through...I think we all fear something happening to us...and then what will happen...
Sharon, There are gel tabs available on the market that have little or no taste and dissolve after being swallowed. Some have other other ingredients added so...
jpro144093@...
Feb 1, 2003 2:51 pm
26770
Darla, SOOOOOO glad you're home! regarding your ??-s about eating. Lily did not have any feeding tube except for a brief period in the hosipital. She did not...
If anyone has written to me in the last few days, I am sorry I didn't receive any of them. If you could send them again I would appreciate it. Just really...
So if she takes it orally we were told by our physician that to get kids to take medicine you mix it with chocolate syrup. The choclocate syrup is suppose to...
Brian Sorensen
sorehead@...
Feb 1, 2003 4:53 pm
26773
Darla, I am so glad to hear Aseneth is home. My daughter Miranda is now
six years old. She started Tube feedings when she was 13 months old with an
NG tube...
Bec, Thankfully Adrian seems to be fine. It is over a fortnight ago that the bad fall happened, and we have not noticed anything out of the ordinary. ...
Jaimee, Interested to hear of your success with clobazam. Of all the anti-seizure meds we have tried with Adrian, it has been by far the most successful, both...
Darla, I just wanted to mention that I am not sure how you can weed out the swallowing difficulties from no appetite. I would think the two may have alot of...
Thanks so much for the offer for help on the NG-tube. Everything is going very smoothly at this point thankfully. She has had some issues with chewing and...
Hi! Has anyone had experience with an ERG? We are having one done in March. How do kids generally tolerate them? Do you get much info from them? Thanks. Nan...
so far so good,... until yesterday. the "cold" finally hit anna grace and now she is just plain sick. (thank goodness we are managing at home) i just hate...
Linda, Thank you for your explaination. I can see your point where atypically developing people may not handle things the same as your garden variety folks. I...
Nan, Spency had an ERG May, 2002. All his previous tests returned normal, including a muscle biopsy. When the ERG returned abnormal, the Doc had a second...
Nan, Jill has had 2 ERG's. One when she was 5 and one last year at age 12. It is not overly pleasant for the kids. They do put some local freezing in the eye...
Valerie, I am just curious if you don't mind, were your ERG results normal? My son had this test done and was abnormal and I had it done (with no symptoms of...
If you read this, or if someone that reads this knows your email address, please email me back. I have a friend from my heart group whos son died at age 8...
Heidi, Both my husband's ERG and my ERG were normal. We still do not have a definitive diagnosis for Jill but the docs think it is some type of mito. Valerie ...
I was checking the IRS site to see what medical deductions we could take this year and noticed that registration fees and transportation to medical conferences...
Bec, Hayden eats by mouth, thank God. I don't think that they will sedate her because they haven't mentioned it, but who knows. You shouldn't beat up on...
Valerie, Thanks for the heads-up on the wires, etc. We were going to do this when Hayden was 4, but we decided to pass at that time. I'll try to prepare her....
Bec, Could you let me know what the neurologist says since I need to know too? Thanks for your understanding too :) ... From: rebecpeck <rebecpeck@...>...
joelinda
joelinda@...
Feb 2, 2003 5:34 pm
26790
There is a email support list called MitoAngels at Yahoo groups .... <http://groups.yahoo.com/group/Mitoangels/> Perhaps this group may help your friend. Jean ...
My son had one when he was a year or two younger than Hayden's age. I honestly didn't think he would tolerate it at all as he gets pretty freaked out with...
This has not been our week! We had to go to ER again last night to replace her NG-tube. Her current one was leaking profusely and we knew this from the...
Darla, Hope it made you feel some better just to get all that off your chest. I'm sorry you seem to be hitting so many brick walls lately. You'll continue to...
Sure will! I sent her an email last night. I doubt she will see it before tmorrow. I don;t know wat her turn around time is like. But, I will forward her...
Hi Darla, I am so sorry to hear things have been so bad with the tube. Those
NG tubes are a real pain in the butt! Things will be so much better when she
has...
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