We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not...
99080
Suzie Heaton
sheaton_ozemail
Dec 1, 2009 2:21 pm
Hi all, we're in hosp with DD due to shortness of breath. I'm curious what else this can be other than asthma. There's no wheezing (not unusual) but no...
99081
joannekocourek
Dec 1, 2009 2:47 pm
Hi Heidi, Most of the airlines are fine with "flight approved" oxygen concentrators. I will try to send you a comprehensive guide off list later today. Alos,...
99082
jjbeck419
Dec 1, 2009 2:47 pm
Jessica, Who DXd the hypermobile type? Many have been DXd with this type but later DXd with classic and occasionally vascular. We first saw a geneticist in...
99083
Darla Klein
honeybear50317
Dec 1, 2009 2:49 pm
I will try to post some photos. Sorry it took me so long to post again but like you, I haven't been on here for quite a while. My computer recently had some...
99084
jjbeck419
Dec 1, 2009 2:58 pm
I used to deal with these darn stubborn fevers a lot as a young adult. For a year or so had daily fevers as high as 105 w/o any obvious illness. I now know it...
99085
Meagan
tooge01
Dec 1, 2009 3:05 pm
I wanted to forward this link for anyone who needs to purchse Neocate. I got this as an e-mail this morning. It is for 15% off of any neocate product when...
99086
Meagan
tooge01
Dec 1, 2009 3:14 pm
For the buccal swab testing do you have to go to the center where it is being done or can you have your physician send a swab to them? Also, I seem to have...
99087
jjbeck419
Dec 1, 2009 3:16 pm
We have been to two geneticists. One in Boston and one at the NIH, Dr Nazli McDonnel. The one in Boston only went by clinical signs & family hx and was not as...
99088
Christopher & Heather...
m0m0fmany
Dec 1, 2009 3:23 pm
Really interesting posts! My family has hyper mobility to the point of needing braces to help support joints. And 2 of my kids have chiari malformation. All 5...
99089
jjbeck419
Dec 1, 2009 3:37 pm
There is also chiari in our family and I happen to believe it is the cause of my brothers epilepsy. Dr McDonnel thinks I have it, but am in no rush for a...
99090
jjbeck419
Dec 1, 2009 3:39 pm
Is that your homeschooling site?...
99091
emhboo
Dec 1, 2009 4:29 pm
I was emailed this document by a metabolic nurse, because for some reason I had it in my head Benadryl was a no-no... hope this helps others. And sorry Ijust...
99092
Alyssa Davi
johnalyssa43
Dec 1, 2009 6:52 pm
Thank you for your post, this is very helpful. ... From: emhboo <eanizer@...> Subject: [Mito] Re: Questions???? To: Mito@yahoogroups.com Date: Tuesday,...
99093
Katiebear
andnowtheres2
Dec 1, 2009 7:07 pm
It was for a doc at St Christopher's For Children in Philadelphia. I don't remember the info either but I know I had contacted him twice and didn't hear a...
99094
La'Dawn Helton
ladawn39278
Dec 1, 2009 7:30 pm
i have been really frustrated with insurance and "good drs." i contacted dr kendall to check on going there and was told it would be 400 up front. our...
99095
Meagan Ochsner
tooge01
Dec 1, 2009 7:36 pm
Thanks for letting me know. Meagan On Dec 1, 2009, at 2:07 PM, "Katiebear" <andnowtheres2@...> wrote: It was for a doc at St Christopher's For Children...
99096
Kimberly Dojonovic
kcpatrick26
Dec 1, 2009 8:27 pm
we just saw dr cohen last week and its the best thing we have EVER done for our daughter.....we are FINALLY getting some answers....he diagnosed her with oral...
99097
Tracy Lengyel
tracyhope2008
Dec 1, 2009 10:12 pm
We saw Dr. Cohen yrs ago- but I'm sure he has learned a lot since then- he said if my daughter had mito- then she would be as severe as my 2 babies were---...
99098
Leigh leighcpe
lleighcpe
Dec 1, 2009 10:37 pm
Tracy, Â Did you have a mbx done for her? Some times the only way of diagnosing is through a muscle biopsy. Â How about family history? ... From: Tracy...
99099
Rivera Family
riverafamily...
Dec 1, 2009 10:39 pm
What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific...
99100
lawblond7@...
lawblond7
Dec 2, 2009 12:03 am
I have elecare if you can use that? Email me off line - it is unflavored, hugs Sharon...
99101
karen brubaker
karenbrbkr
Dec 2, 2009 12:11 am
I have only met Dr. Cohen a couple of times. He has never treated my son but found him to be very informational. Our Mito doc trained under him and I LOVE the...
99102
lildevil2956
Dec 2, 2009 12:30 am
my son is 3. he has been on CO-q10 creatine and alpha for about a yr now. they worked wonders on him :) anyways he started about a week ago with his tic. he...
99103
LNerenhausen
lisanerenhausen
Dec 2, 2009 12:33 am
we're close to your situation. My daughter, Leah, is 11 years old and is suspected of having mito. She has had two muscle bioposies and has had a couple of...
99104
mito1mom@...
pinkstawberries
Dec 2, 2009 12:48 am
I can sympathize with you and your situation. We saw Cohen and when we were at his office he was great. I know that he refused to even consider the biopsy...
99105
Meagan Ochsner
tooge01
Dec 2, 2009 1:01 am
I have lots of Neocate 1+. I believe it is almost identical to Neocate jr. Meagan On Dec 1, 2009, at 7:04 PM, lawblond7@... wrote: I have elecare if you...
99106
Kass
kasskids
Dec 2, 2009 1:29 am
Hi there, While anything is possible, that your son has been on the supplements for this long without a reaction makes them being responsible for the tics less...
99107
mitoakl
Dec 2, 2009 1:30 am
Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a...
99108
Kass
kasskids
Dec 2, 2009 1:33 am
If your able to see Dr. Cohen, I have little doubt that you will be thrilled with the care you receive there. I personally think Cohen is just as capable in...
