Re: Re: puberty = symptoms--REGRESSION, AUTISM

[Guest guest]

My now 12 yr old son had/has autism tendenacies when he was little. I even got

literature from a local autism group. He would line up the dog biscuits and

other toys and did not like change. He also did not talk when he was 2 1/2 but

was very smart. We played alot of " cherades " with him pointing to what he

wanted in the cupboard. We sought help thru the local birth to 3 program and he

went to a special school 45 minutes from our little city. They helped him to

play with other kids and talk a little. When he was 3 he came back to our local

school and they worked with him. He still had social issues around kids he did

not know into the 2nd grade. Just recently last year in 6th grade did he grow

out of most of his " shyness " . My kid would run out of the Mcs playland if

other kids came in, he ran out of the library where we registered for

kindergarten when he saw other kids in there. He even ran out of the small zoo

he had been to lots of times when another member with mito came to visit with

her son and daughter and her son is the same age. That was just a couple of

years ago.

The new school he started last year because we moved the counselor thinks he may

have Auspbergs Syndrome--a social type disease. He is very smart and has gotten

awards in school for math, geography, science. He is also very comfortable

around kids he has known for awhile but not other kids.

As far as regression goes, when he is sick or tired he regresses to acting like

a 3 yr old. back in 2002 when he was having all of the constipation problems,

he would have been 11, during one hospital visit the nurse commented that he was

acting like a little baby.

He also recently grew out of episodes where if he was tired or sick and also

upset he would not tell you what was wrong but would just write single words on

a sheet of paper. Like playing cherades.

Janet Sample

Re: puberty = symptoms

I can tolerate aerobic exercise (with heart rate increased well above

resting), but can't tolerate walking and light exercise. Perhaps

your daughter has a similar issue, as the metabolics of aerobic

and " anaerobic " exercise are different.

I have one son who is slightly syptomatic, but hasn't been proven to

have mito disease, just " suspected " . He has had lactate and pyruvate

tested, and a repeat of the newborn screening tests and chromosome

abnormality tests. We don't have the genetics behind my mito issues,

so he can't be tested for the specific defect. His labs so far have

been mostly normal, except for some slightly elevated lactate levels

that may be due to his acting up when he gets blood drawn.

We decided to get him tested at our local MDA clinic, where I go,

since he was at the time showing a regression (he is developmentally

delayed and has autistic tendencies as well). Since then (about a

year ago, when he was 3), he's shown good progress in his

development, although still has hypotonia.

It's a tough call, but unless she is having other issues (problems in

school, breathing or heart issues), I'd say look into other sports

that don't have as much " down time " and keep a close eye on possible

other issues. On the other hand, if she is concerned about her

health/ability to play sports/exercise, maybe you can talk to her

about the pros and cons of having some tests run (my possibly

affected son is only 4, so I can't discuss it with him).

It is interesting you mention " atypical asthma " - both me and my

older son (not the delayed one) have that diagnosis, what we were

told in our cases is " temporary asthma " . It turned out my son's was

caused by a severe but occult sinus infection - no fever, so they

thought it was just allergies (he had gone to several doctors who

missed it, including an ENT!). He was on antibiotics for about 6

weeks, and his recurrent cough and asthma symptoms subsided. The

allergist who found the infection kept checking him for the cough,

and made him continue antibiotics until the cough subsided. I on the

other hand are still on Pulmocort and albuterol, and need some

further testing to find out if the asthma has subsided.

Take care,

RH

> > Caitlyn,

> > Welcome to the group. I am a and am 28. I

started

> having

> > symptoms when I was in my early teens and was diagnosed at age

> 18. You

> > are right about the heat taking a toll on the body. I know you

> want to

> > enjoy being outside, just remember to pace yourself. You have

> found a

> > great group of people here.

> > Smiles,

> > a

> >

> > On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 "

> > writes:

> > I am a new member. Just joined this group a couple of days ago

and

> > thought I should introduce myself. My name is Caitlin. I am 22

> years

> > old and from central PA. I have not officially been diagnosed

with

> a

> > mito disorder but one is suspected.

> > I have had cyclic vomiting syndrome since I was 4 and was

> diagnosed

> > with that when I was 8. There is a Dr in California, Dr. Boles

who

> > believes that cyclic vomiting syndrome (CVS) is mitochondrial

> related.

> > He has a study going on and I met the criteria for the first

phase

> of

> > the study. There are three phases of the study and they are

either

> on

> > the second or third, I can't remember. I had my COQ10 level

> checked and

> > it was below normal thus leading us to suspect even more that I

> have a

> > mito disorder.

> > I have always needed a lot of sleep. Even as a baby I slept a

lot.

> I am

> > tired pretty much all of the time. Heat makes me even more tired.

> I try

> > to stay cool in the summer because I know if I do have mito that

> > extreme temperatures are pretty bad but it is hard because I love

> going

> > out in the summer. I've written a lot so I will go for now.

> > Caitlin

> >

> >