Jean- Thanks for being mama bear!!! We need to hear such things once in awhile. Thanks for sharing your posts to these two gentlemen and their responses. I am...
2051
KarenDillr@xxx.xxx
Jun 30, 1999 10:22 pm
WOW Sharon it sounds like you have been through a lot. Welcome home. I am new to this and was wondering if you or anyone could tell me what is "complex 1"?...
2052
Jeffrey Downs
jdowns@xxxxxxxx.xxxx
Jun 30, 1999 12:39 pm
I always said that vitamin C caused diarrhea in Alycia. When she was a toddler, the 1000mg dose gave her the runs so we had to cut it back. Now, she...
2053
mprosser@xxxxx.xxxxxx...
mprosser@xxxxx.xxxxxx...
Jul 1, 1999 12:45 am
Julia, Our O.T. wants Matty to eat too. It is such a social thing. It involves every part of our living life. We'd be happy if matty would just eat a ice...
2054
Jeffrey Downs
jdowns@xxxxxxxx.xxxx
Jun 30, 1999 12:47 pm
Hi, I read Dr. Zullo's post but I don't understand what is expected of us, if anything. I understood that this is an announcement that a research society for...
2055
mprosser@xxxxx.xxxxxx...
mprosser@xxxxx.xxxxxx...
Jul 1, 1999 12:50 am
I printed the into and took it to my doctor today. He will also pass it on to his partners. Mary...
2056
Jeffrey Downs
jdowns@xxxxxxxx.xxxx
Jun 30, 1999 12:55 pm
I have also been educating the community about mito disease every chance that I get. Alycia was photographed last year when her ramp was built and included...
2057
nmnett@xxxxx.xxxxxxxx...
nmnett@xxxxx.xxxxxxxx...
Jul 1, 1999 2:07 am
Mary, if you have any questions about webtv, email me and I'll try to help. We don't seem to be too limted in what we've been able to do. nicole...
2058
The Cooper's
j-cooper@xxx.xxxx
Jul 1, 1999 2:13 am
Go Kathy!! I agree 100% with your attitude toward the way Alex eats. Being able to participate in the social aspects of eating and doing some oral work is...
2059
mccc@xxxxxxxxxx.xxx
Jul 1, 1999 3:05 am
Nicole, My sons name is Brandon. I think you are referring to my description of his rigidity or movement disorder. He has complex I defect. I have not heard...
2060
Superman
KRYPTON1@xxxxxxx.xxxx
Jul 1, 1999 4:15 am
I used to bang my head. From an infant up to second grade. My mom was always getting evil looks from folks, because once in a while, I had black and blue...
2061
Dr. Steven J. Zullo
zullo@xxxxx.xxx.xxxx
Jul 1, 1999 4:53 am
Dear Mr. Downs, You are exactly right, nothing is expected of you. We asked that the intro letter be forwarded to the lists for informational reasons, to...
2062
nicole nett
nmnett@...
Jul 1, 1999 4:42 am
Martha, Jared will put his arms and legs out in front of him and stiffen up, sometimes pointing his toes, sometimes twirling his feet. He will also position...
2063
Stacimom@...
Jul 1, 1999 5:29 am
In a message dated 6/30/99 9:42:47 PM Pacific Daylight Time, nmnett@... writes: << Every time I hear one person describe one of Jareds symptoms, I have...
2064
Superman
KRYPTON1@...
Jul 1, 1999 5:49 am
I wrote an e-mail to ABC's 20/20, see if they are interested. Here is what I wrote (hope I didn't make any errors): Great Story Idea: Metabolic Disorders/...
2065
Linda
joelinda@...
Jul 1, 1999 2:13 am
Lori, I also talk a lot about mito and it's subsidieries. I always make sure I mention ADHD along with all the others you mention too as everyone I ever talk...
2066
Linda
joelinda@...
Jul 1, 1999 2:20 am
Cheri, the head banging thing is so classical ADHD also. I'm sure it happens with other problems too, but I remember that being a big issue at on of the ADHD...
2067
Keshav Singh
singhke@...
Jul 1, 1999 1:49 pm
I am not sure I mention that I published a book last year on "Mitochondrial DNA mutation in aging disease and cancer". The publisher is Springer....
2068
mprosser@xxxxx.xxxxxx...
mprosser@xxxxx.xxxxxx...
Jul 1, 1999 1:54 pm
While none of this is funny one of my daughters now (35) rocked so hard the crib moved across the room every night. We finally put her in a bed at 18 months...
2069
mprosser@xxxxx.xxxxxx...
mprosser@xxxxx.xxxxxx...
Jul 1, 1999 2:13 pm
Amy, Are you my Theresa? Yes she did all the same thing. And to some degree so does her brother and sisters even now. I am always cutting tags off of...
2070
mprosser@xxxxx.xxxxxx...
mprosser@xxxxx.xxxxxx...
Jul 1, 1999 2:31 pm
Matty has complex 1 and does not have this symptom. He does stare off sometimes for a few seconds and jerks in his sleep unlike normal jerking when someone...
2071
Jean & Frank Shepherd
shepherd@xxxx.xxx.xxxx
Jul 1, 1999 4:13 pm
... One important statistic to which all with confirmed or suspected mitochondrial dysfunction (mtDNA- or nuclear DNA-mutations) should contribute (anonymously...
2072
Keshav Singh
singhke@...
Jul 1, 1999 4:42 pm
Dear Shepherds: Let me answer the MRS question and Steve will answer the rest. ... that you are registered in Maryland so I am wondering if pressure upon my...
2073
Linda
joelinda@...
Jul 1, 1999 7:28 am
Amy, Jennifer, my rocker was the same way as you with not wanting me to hold or touch her, and she still is standoffish and complains if you chew by her or...
2074
Linda
joelinda@...
Jul 1, 1999 3:52 pm
Mary, thank you for sharing this. Jennifer is also the only 1 of my 4 who did the rocking thing and she has some cognitive problems. It is she who was preg out...
2075
Linda
joelinda@...
Jul 1, 1999 4:09 pm
OH, Mary, what a good idea wearing the socks inside out, we will try that with Jordan! Linda S. ... From: Mary Prosser <mprosser@...> To:...
2076
Laurie
lfitzger@...
Jul 2, 1999 6:28 am
Mary- What you are describing is tactile defensiveness. It is a neurological disorder. I don't know how much it would help an adult, but sensory motor...
2077
Cheri77777@...
Jul 1, 1999 7:11 pm
... I have seen lots of children do what you and Linda speak of, but what you are describing is rocking, and what Alex did was to bang his head. He was not ...
2078
Steve Zullo
zullo@...
Jul 1, 1999 7:54 pm
Dear Shepherds, Yes, NIH is an agency of the Federal Government, as such, it is answerable to the Congress, which means the people. WE are always told to...
2079
Mary Prosser
mprosser@...
Jul 1, 1999 8:12 pm
well it is a hard row to go but understanding goes a long way. Theresa now has serious diabetes . Still doesn't like to be touched and very sensitive to what...
