your son Jack

[Guest guest]

Vivian--

I know you mentioned some things about your son Jack before, but what you mentioned here strikes me as very similiar to my son. My son was 10 in December. He always had problems with constipation--come to think of it so did I but not really bad. It really got bad last year. At one point he got so bad that he was vomiting everything up. Supposedly it was because the food had no where to go.

3 years ago he had terrible migraine headaches for about a month. Had MRI's and everything. One ER doctor contributed it to a concussion. After a couple of months it went away. He still has dizziness now and then and what you describe in your daughter as the blacking out with the arms moving. Sometimes he has what others have described as absence seizures where he just stares for a minute or two. I have not told the doc about that yet.

Anyway, last year I started on my own to given a few of the Q-gel I was taking. I began to notice that if he forgot to take the Qgel because he slept over at a friends (this was in July) or just plain forgot that he would complain his stomach hurt. Actually it was his left side where the colon is.

Anyway, did not buy the Q-gel for a while because of money. Never really thought about it. Then in October and November he got so bad he did not want to go to school because of the stomach pain. In November when we saw Dr Tick we decided to do the MELAS test and he said that starting him on the carnitor and Q-gel and vitamin C would not be a bad idea.

He will not take the liquid carnitor--he does not like the cherry taste and the pills dissolve in your mouth too fast so we are going to try some over the counter of that.

But, he has been taking the Q-gel at least once a day. You are supposed to take 5-10 times your body weight in kilos each day. He weighs 97 now so that is 97 divided by 2.2 or 44. 5 times is 220. We started out taking 4 15 mg of the q-gel because I had gotten a great deal at Puritans Pride (they do not seem to carry them anymore).

because each one is supposed to be 3 times as effective, 4 15 mg would be 180, taken twice a day. Then he wanted to take 1 of the 60 mg big capsules I was taking so he would not have to take so many. So, now at least if he remembers to take it once a day that is ok--twice a day is great.

Now, if he says his stomach hurts I ask him when the last time he pooped. If he has in the last day we can usually figure out it was eating too much junk food or drinking soda too fast. Even drinking too much cold chocolate milk makes his stomach hurt.

I still constantly have to remind him to take his vitamins and pills each morning before I go to work. He forgets alot of the time and I will find them still in the cap of the bottle when I get home.

He is always preocuppied and in a hurry so I am not sure how much is mito related but I know his symptoms get much worse when he is tired.

Anyway, these do seem like the symptoms he has. They are also very wierd--go in streaks. Just after xmas break he was out of school for a whole week. Could not shake the flu or whatever he had. Would sleep from 7:30 at night until 3 pm in the afternoon. Luckily I was unemployed (if you can call it that) so could stay home with him.

He was very, very hard to wake up--I even slapped him one day because I did not know if he was unconscious. He would not respond to tickling, water on his face, or anything.

Well, hang in there.

By the way--how old are your kids?

Janet Sample

By the way--how

RE: For Terry!

Terry,

I don’t mind telling you my story. You will find the people on the list are very good about filling in the pieces. When I first came it was hard to keep everyone straight, sometimes it still is!

I found my way here last September. I had never heard of mitochondrial anything. (I had worked in the medical community for 15 years, but had stopped in 1989).

I had a long history of different system problems that did not fit into any clear diagnosis and were all treated as separate problems. For example, I had rectal bleeding at age 5, and had the first of 10 colonoscopies over the years…they were never able to pin point a reason for the constipation alternating with diarrhea and other abdominal problems…to say nothing of the rectal bleeding that would come out of the blue and stay sometimes as long as a month. Label, irritable bowel. Migraines that began at 15. Label stress. Lost all peripheral vision for a day…like smoke coming in the sides, label migraine aura… (Now I wonder a TIA?), blurred vision in one eye that lasted a month or more, on and off. Not diagnosed at the time, maybe optic neuritis. TMJ problem that resulted in surgery. Muscle spasms in neck and back blamed at the time on TMJ…I lost a ton of weight in high school, although I was already very thin, the doc called it anorexia, I knew that was wrong, it had nothing to do about weight issues. But my mother called me a hypochondriac (which is a wound that I carry to this day) so I would simply stop complaining, a doc gave a diagnosis and that was it, I was a kid and there was no one to question the doctor when my mom already had me labeled. And on…ugh…I was always a “fragile” child” meaning that when I would get sick I would get really sick. Oh yeah, I would be fine for long stretches of time.

Zoom ahead, I’m 39, my husband had been out of work or underemployed for 18 months, I had all these symptoms pop up, went to the doctor, and was told that it was stress because I had three children. So I stop going, (that old hypochondriac wound!) Figured I would rather have symptoms than be a nut! Finally have a headache that I thought would kill me along the fact I had been losing color, (I am an artist by trade, not a good thing to loose!), which when I complained again got me a MRI.

So for my 40th birthday I received a diagnosis of multiple sclerosis, not possible or probable, but definite! Confirmed by three neurologists, two of which were MS specialist. So for three years I live in this place with that label. I took it pretty well, in fact, finally I thought “I’m not crazy” and oh, well, everyone has to deal with something…better off this than a terminal illness.

Unfortunately a year into the diagnosis, I do not fit the box well anymore, (for those who are technical and reading this, although my spinal fluid did not have bands, my MRI had what they labeled as plaques, my visual evoked potentials were way off and I had a history of classic relapsing and remitting). But as the years progressed, I had lung and heart issues, and although spastic legs, I could still walk. My GI problems started acting up. I would eat and within three hours everything would dump out of my system as if flushed! No matter if I was near the bathroom or not! If my whole family had not eaten the same thing I would have been sure it was food poisoning, and it happened the next month as well! My swallowing was effecting. I would wake up choking in the night.

My neuro got totally fed up with me and kept sending me for additional test. My internist even yelled at me, telling me I was bothering the neuro! They tried IV steroid, which made me worse…uh not what you would expect with MS. Anyway…it was clear that I had exasperated my physicians. My husband was able to get me into the MS head at northwestern memorial hospital. He said that he didn’t think it was MS, not that he was removing the diagnosis yet, but that he wanted to start and look at it all with new eyes. He said that he would help me find out what was wrong. Because the doc’s had made me feel like an idiot before I never mentioned the vague neuro symptoms that my son was having. Well this MS guy was so kind, I did…and he leaned back into his chair and sighed…saying that may be a clue.

Jack was born with problem pooping. By three months old they thought he had something called Hirsh prong Springer’s disease and had him down at children’s for a biopsy, it wasn’t. Jack has had abdominal problems that come and go, breathing problems that started out of the blue, problems healing and when he gets sick he gets very sick and stays that way for awhile. It is hard to know what will begin it or stop it. Blurred vision at time, headaches, dizziness, leg shaking, feeling like his bones are Jell-O…etc.

Charlie at three days old they thought he was having seizures and was back in the hospital. When he was 11 years old he lost his memory for and entire 24 hours. He could not remember before or after five minutes. They worked him up for meningitis and all the other usual things and discharged him three days later with no clear answer. Janie has been having fainting spells, but not really fainting. She goes down. Her arms shake; she says she knows I’m there. They last a minute or two. She had a long sickness at 8 years old, worked up for rheumatoid arthritis, it was later called vasculitis.

We got an appointment with Cleveland Cohen. He was very nice, but did not know we were from out of town and we were there on a day when he had residents. He said he would rather not see out of towners when he was interrupted. It was o.k. He thinks there is enough evidence to have Jack come back for a muscle biopsy.

The pediatrician is a tad dismissive of the test results from Cleveland, saying that they could be normal after all. I am praying that my biopsy will show something so that Jack won’t have to have a biopsy.

I think it is harder to not know what is going on than to know and begin the process of dealing with it. I may be fooling myself, but I have grown weary of turning around in circles trying to figure out which road to go down.

I think sometimes if it were not for my children I would throw up my hands and say oh well, I don’t even care. But because of the children and because I know that I am progressing, I press on, in hopes of stopping or slowing the progress and also in order to know how best to take care of them.

Sorry for the novel. I hope you find some useful information in it. You can e-mail me directly if you want and we can compare Chicago notes. I live in Rolling Meadows, where in Chicago are you?

Take care, remember to hope.

Vivian

-----Original Message-----From: terry mohring Sent: Friday, May 09, 2003 11:51 AMTo: Subject: Vivian

Hi Vivian,I am here praying for your answers also. I have been reading the board for awhile now so I only know a bit about your search. Would you mind sharing again. You can email me or put on the list. I am in the chicago area also. My daughter was evaluated by DR. Cohen 3 weeks ago. WE are waiting results. I know your anguish at not having answers but knowing something is wrong. I see similarities in some of what you have written with our story.Hugs,Terry_________________________________________________________________MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virusMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.