Questions about illness and regression

[Guest guest]

Cindy,

It may be a long time before you find a Doctor that listens to you but don't give up, keep looking, keep a detailed account of all your son's 'funny' symptoms ( a note book will do). Keep asking questions. People on this website are wonderful, very caring, and full of knowledge that only a person that has experienced the same can offer.

Finally Cindy never ever doubt your mother's intuition that something is wrong. Good luck and don't give up. A mother's stubbornness and diligence is sometimes all a child has to find the answers.

Hugs,

.

Questions about illness and regression

Hi all, just another little question!! I was wondering, my son who isn'tdiagnosed with anything yet, neither are any of us!!But anyway, every time he gets sick he seems to get funny, well not funny,but he only just gets "normal" sick, no sicker than an average child, but hehas what I class as unusual things happen to him while sick, like recentlyhe had the same cold that everyone over here has, but his speech went bad,like it was so hard to understand that even us as parents had to ask himagain and again what he said, he is nearly 3 with hypotonia and lots ofother weird movements, possible nocturnal seizures (mild). He also got veryvery clumsy with his walking and fell a lot and stumbled. Now he is better,some 2 weeks later he is basically back to normal.So do we look at this as just one of those things, or does it indicate apossible mito sign? As we have had so many people suggest mito with ourfamily history, as I posted to the board before (autism, aspergers,epilepsy, GERD etc etc).I was just unsure as whether this could just be normal for a child withhypotonia and a cold of if it indicates more towards mito?And yes I am still gathering more courage and evidence before I present myideas to the doc, just so that he doesn't laugh at me!!Thanks again!!CindyPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi all, just another little question!! I was wondering, my son who isn't

diagnosed with anything yet, neither are any of us!!

But anyway, every time he gets sick he seems to get funny, well not funny,

but he only just gets " normal " sick, no sicker than an average child, but he

has what I class as unusual things happen to him while sick, like recently

he had the same cold that everyone over here has, but his speech went bad,

like it was so hard to understand that even us as parents had to ask him

again and again what he said, he is nearly 3 with hypotonia and lots of

other weird movements, possible nocturnal seizures (mild). He also got very

very clumsy with his walking and fell a lot and stumbled. Now he is better,

some 2 weeks later he is basically back to normal.

So do we look at this as just one of those things, or does it indicate a

possible mito sign? As we have had so many people suggest mito with our

family history, as I posted to the board before (autism, aspergers,

epilepsy, GERD etc etc).

I was just unsure as whether this could just be normal for a child with

hypotonia and a cold of if it indicates more towards mito?

And yes I am still gathering more courage and evidence before I present my

ideas to the doc, just so that he doesn't laugh at me!!

Thanks again!!

Cindy

[Guest guest]

Hi Cindy,

I'm going to quickly respond as I'm rushing around this morning, but regression with illness is a very frequent occurrence with kids with mito. I'm sure others will respond with more detail. Our 3 1/2 year old son, recently dx with mito, has hypotonia and he "lost words" in his vocabulary when he was less than 2 years old. Luckily, with speech therapy he regained those words and many many more and now talks above his age level. Last year, he got a flu virus and his GI system shut down. He now has a g-tube.

What I've learned from other mothers and the drs is that it is very important to make sure a child with mito is getting enough fluids and nutrition during illness. For some, that means IV (with 10% dextrose) and the hospital. There is more on the website (umdf.org) about this.

Anne R mom to Asher ( 3 1/2 complex III defect and possible complex I defect)

[Guest guest]

Hi Cindy,

I'm new to the whole mito business. In fact my son who is 10 is going to have a muscle biopsy soon (waiting for a surgery date). Anyway what you described of your son sounds ljust like what we went through 2 years ago. Josh woke up one morning feeling fine by the time school was over he had slurred speech (my family thought I was crazy but a mother knows). The next day I picked him up from school and he coulld not hardly walk.Took him to the emergacy room they checked for meningitis he was normal. He had an MRI the next day and by 3:00 in the afternoon he was in the hospital with encephelitis. While in the hospital a lot of blood tests were performmed they found he had high levels of lactic acid. We went to Mayo clinic last fall the skin biopsy showed nothing so now we are waiting for the muscle biopsy. Except for the episode two years ago josh has been a

normal kid, not lacking energy at all. He is now just beginning to complian about side aches and fatigue after playing. I don't know if this helps at all but it sure feels good to talk to somebody about it. Thanks for listening!!!

Dawn Cindy & Zander wrote:

Hi all, just another little question!! I was wondering, my son who isn'tdiagnosed with anything yet, neither are any of us!!But anyway, every time he gets sick he seems to get funny, well not funny,but he only just gets "normal" sick, no sicker than an average child, but hehas what I class as unusual things happen to him while sick, like recentlyhe had the same cold that everyone over here has, but his speech went bad,like it was so hard to understand that even us as parents had to ask himagain and again what he said, he is nearly 3 with hypotonia and lots ofother weird movements, possible nocturnal seizures (mild). He also got veryvery clumsy with his walking and fell a lot and stumbled. Now he is better,some 2 weeks later he is basically back to normal.So do we look at this as just one of those things, or does it indicate

apossible mito sign? As we have had so many people suggest mito with ourfamily history, as I posted to the board before (autism, aspergers,epilepsy, GERD etc etc).I was just unsure as whether this could just be normal for a child withhypotonia and a cold of if it indicates more towards mito?And yes I am still gathering more courage and evidence before I present myideas to the doc, just so that he doesn't laugh at me!!Thanks again!!CindyPlease contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

that hapend to my brother except he did not get sick just one day

during gym class he started talking wierd and running funny and kept

falling

> Hi all, just another little question!! I was wondering, my son who

isn't

> diagnosed with anything yet, neither are any of us!!

> But anyway, every time he gets sick he seems to get funny, well

not funny,

> but he only just gets " normal " sick, no sicker than an average

child, but he

> has what I class as unusual things happen to him while sick, like

recently

> he had the same cold that everyone over here has, but his speech

went bad,

> like it was so hard to understand that even us as parents had to

ask him

> again and again what he said, he is nearly 3 with hypotonia and

lots of

> other weird movements, possible nocturnal seizures (mild). He also

got very

> very clumsy with his walking and fell a lot and stumbled. Now he

is better,

> some 2 weeks later he is basically back to normal.

>

> So do we look at this as just one of those things, or does it

indicate a

> possible mito sign? As we have had so many people suggest mito

with our

> family history, as I posted to the board before (autism, aspergers,

> epilepsy, GERD etc etc).

>

> I was just unsure as whether this could just be normal for a child

with

> hypotonia and a cold of if it indicates more towards mito?

> And yes I am still gathering more courage and evidence before I

present my

> ideas to the doc, just so that he doesn't laugh at me!!

>

> Thanks again!!

> Cindy

[Guest guest]

For our daughter, she has a non specific mito, she usually regresses after a virus/stress has passed. She does, however, have very similar symptoms to your son. Typically she starts getting very clumbsy and sometimes her speech is affected, for her they usually seem to last from a few days to the worst was about 2 months long. Granted she only started "crashing" from viruses within the past six months, so I am far from an expert. Also every child with mito has there own set of problems and reactions to different things. I do think some kids do regress from a virus during the virus, so what you are seeing could very well be from mito. Our Mito doctor wanted to do a MRI after the first one, to ensure there was no brain damage (thankfully MRI was normal). She has had a few much smaller ones since, and we have not needed any follow up. We are now watching and waiting to see if she will regress from a heat stroke last week, so far so good. Best wishes.

,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007