Neuro issues/EMG

July 1, 2004

Hi everyone,

I am coming to the experts...Madelaine (7) took a crash back in March following a cold. She had horrible ataxia, irritability, developmental regression, fatigue, etc. Her cocktail doses were doubled and she is now on the max dosing of meds. That did help a little she had some improvement in the ataxia and she has seemed to stablize in a new low. However, she is having increasing fatigue and muscle weakness, as well as, foot drop on the left. We have been seeing the pediatrician on a regular basis. She knows very little about Mito and is trying to research, but having very little success. She is very honest with us that she does not have an understanding at all. She suspects Madelaine is progressing, but does not want to assume this and miss something else. She has spoken with a local Neurologist who knows even less about Mito and told her he felt it is disease progression and there is nothing we can do but let her

go--JERK! She is not willing to do this and has ordered an EMG/nerve conduction study. Have any of you had your children have this test? I know very little about the test itself. Madelaine seems to have some dementia issues with memory loss and she is impossible to reason with--she is also ASD.

Any suggestions would be great and again thank you all for your wealth of knowledge!

Tammy-mom to Madelaine and __________________________________________________

July 1, 2004

Hi,

In terms of the EMG, if you have to do it, you have to do it, but, if you don't, it's something to avoid. Maybe a 2nd opinion from a neuro who knows about mito before you put your child through the EMG???? My son has a very high pain threshold - never cries for blood draws, IV starts, etc., but he cried through the EMG. I have also heard from others that it is painful. My husband and I did it b/c we felt we had to, but, in restrospect, it gave us no new info. I felt very angry at the docs after we did it, b/c Asher experienced pain. I know of others, though, who have made the choice to go ahead and do it and they did get important information regarding myopathic changes.

Anne R - mom to Asher (age 3, complex III defect and possible complex I defect)

July 1, 2004

Hi- Just my opinion, but my 12 yr old just had one- it was excruciatingly painful for him- and really not worth it for him... they lied and told him & I that it was "like pin pricks"- yeah-BS!- and he is a tough kid- who does not bat an eye during blood draws, IVs etc.

Cindy-GA

Neuro issues/EMG

Hi everyone,

I am coming to the experts...Madelaine (7) took a crash back in March following a cold. She had horrible ataxia, irritability, developmental regression, fatigue, etc. Her cocktail doses were doubled and she is now on the max dosing of meds. That did help a little she had some improvement in the ataxia and she has seemed to stablize in a new low. However, she is having increasing fatigue and muscle weakness, as well as, foot drop on the left. We have been seeing the pediatrician on a regular basis. She knows very little about Mito and is trying to research, but having very little success. She is very honest with us that she does not have an understanding at all. She suspects Madelaine is progressing, but does not want to assume this and miss something else. She has spoken with a local Neurologist who knows even less about Mito and told her he felt it is disease progression and there is nothing we can do but let her go--JERK! She is not willing to do this and has ordered an EMG/nerve conduction study. Have any of you had your children have this test? I know very little about the test itself. Madelaine seems to have some dementia issues with memory loss and she is impossible to reason with--she is also ASD.

Any suggestions would be great and again thank you all for your wealth of knowledge!

Tammy-mom to Madelaine and

__________________________________________________

July 1, 2004

In terms of the EMG

We chose NOT to do this, the MD doctor said she felt it wouldn't show anything, I felt from the start that we shouldn't do it, I personally am so SICK of my child being poked and for what, it isn't going to change anything, they can't cure, they can only treat the illness, so why should I put him through yet another painful process. They sent us a thing to read about it, as the appt was scheduled (per Nero doctor) and it said it can be painful, that was enough for me. I guess if we hadn't had a DX then I might have but we do have a DX so I really didn't see the point. Plus for us it is a long drive, have to stay over night, and I have a baby to consider too. I ask about if they found something would they be able to really do anything more, and I got a probably NOT, after that I really didn't see the point. Oh I did get the "it gives us more information for others" guess that makes me selfish cause I feel my child has been a test subject way too long (it took doctor after doctor and 15 years of tests for them to figure it out) Just my two cents.

J, Mom to , 15, mito unknown, and Mirella, 7 months

July 1, 2004

I am sorry to hear about the trouble she has been having this spring/summer. Concerning the EMG, my 16 year old is scheduled to have one on July 30th and I only know what I have been told about the test My son have very little sense of temperature and pain sensors and so we are investigating through this test. If you have this done before we do I would appreciate hearing how it went. I have been told it can be a trying test. Not necessarily painful but irritating at the least. They do some electrical currents through the limbs by placing electrobes on the skin w/ sticky backing and then also may place small needles just under the skin to test the muscles. I am not worried about Luke having this test as he feels little pain but it doesn't sound very fun. Some people have said not to do it to younger kids unless they felt it real necessary. Hope this helps you some. Darla: mommy to Asenath, Zipporrah, Luke, and the gang Neuro issues/EMG Hi everyone, I am coming to the experts...Madelaine (7) took a crash back in March following a cold. She had horrible ataxia, irritability, developmental regression, fatigue, etc. Her cocktail doses were doubled and she is now on the max dosing of meds. That did help a little she had some improvement in the ataxia and she has seemed to stablize in a new low. However, she is having increasing fatigue and muscle weakness, as well as, foot drop on the left. We have been seeing the pediatrician on a regular basis She knows very little about Mito and is trying to research, but having very little success. She is very honest with us that she does not have an understanding at all. She suspects Madelaine is progressing, but does not want to assume this and miss something else. She has spoken with a local Neurologist who knows even less about Mito and told her he felt it is disease progression and there is nothing we can do but let her go--JERK! She is not willing to do this and has ordered an EMG/nerve conduction study. Have any of you had your children have this test? I know very little about the test itself. Madelaine seems to have some dementia issues with memory loss and she is impossible to reason with--she is also ASD. Any suggestions would be great and again thank you all for your wealth of knowledge! Tammy-mom to Madelaine and __________________________________________________

July 1, 2004

My son had a NC/EMG last summer. He was a big boy but I could tell it was very painful. Test did reveal large fiber neuropathy, but since there is no treatment for this condition, it was really pointless.

-----Original Message-----From: Tammy Sent: Thursday, July 01, 2004 10:45 AMTo: mito Subject: Neuro issues/EMG

Hi everyone,

I am coming to the experts...Madelaine (7) took a crash back in March following a cold. She had horrible ataxia, irritability, developmental regression, fatigue, etc. Her cocktail doses were doubled and she is now on the max dosing of meds. That did help a little she had some improvement in the ataxia and she has seemed to stablize in a new low. However, she is having increasing fatigue and muscle weakness, as well as, foot drop on the left. We have been seeing the pediatrician on a regular basis. She knows very little about Mito and is trying to research, but having very little success. She is very honest with us that she does not have an understanding at all. She suspects Madelaine is progressing, but does not want to assume this and miss something else. She has spoken with a local Neurologist who knows even less about Mito and told her he felt it is disease progression and there is nothing we can do but let her go--JERK! She is not willing to do this and has ordered an EMG/nerve conduction study. Have any of you had your children have this test? I know very little about the test itself. Madelaine seems to have some dementia issues with memory loss and she is impossible to reason with--she is also ASD.

Any suggestions would be great and again thank you all for your wealth of knowledge!

Tammy-mom to Madelaine and

__________________________________________________

July 1, 2004

-My daughter was 13 when they did the EMG/nerve conduction on her.

She is a strong little girl and usually has no problems with the test

they do on her, but this one was very painful. The neurologist that

performed the test on her was kind enough to split the test up in two

days, not sure this was any better because she dreaded the next

part. The test didn't show anything for either. The

neurologist said there was obviously something wrong but he couldn't

figure it out. That is when we were finally sent to Cleveland to Dr.

Cohen. These kids go through so much pain as it is I was very upset

that had to go through that and for nothing. Its a hard

decision.

Pat

-- In Mito , Tammy wrote:

> Hi everyone,

>

> I am coming to the experts...Madelaine (7) took a crash back in

March following a cold. She had horrible ataxia, irritability,

developmental regression, fatigue, etc. Her cocktail doses were

doubled and she is now on the max dosing of meds. That did help a

little she had some improvement in the ataxia and she has seemed to

stablize in a new low. However, she is having increasing fatigue and

muscle weakness, as well as, foot drop on the left. We have been

seeing the pediatrician on a regular basis. She knows very little

about Mito and is trying to research, but having very little

success. She is very honest with us that she does not have an

understanding at all. She suspects Madelaine is progressing, but

does not want to assume this and miss something else. She has spoken

with a local Neurologist who knows even less about Mito and told her

he felt it is disease progression and there is nothing we can do but

let her go--JERK! She is not willing to do this and has ordered an

> EMG/nerve conduction study. Have any of you had your children

have this test? I know very little about the test itself. Madelaine

seems to have some dementia issues with memory loss and she is

impossible to reason with--she is also ASD.

>

> Any suggestions would be great and again thank you all for your

wealth of knowledge!

> Tammy-mom to Madelaine and

>

> __________________________________________________

>

July 1, 2004

I have been planning to ask some questions before doing the test, but have thought since Luke suffers sensory feeling loss that he most likely won't feel much. I could be wrong though since it a muscular test as well as nerve related. We may begin the test and not complete it if he feels much pain or not do it at all if we feel it useless to perform. I hate the thought of testing in this manner, but wonder if the info might help some. I do assume the info will not result in the ability to fix his symptoms, so have wondered about the importance. Many years ago when I was first going through diagnosis testing I did TONS of tests that proved little and yet were very hard to do. Many made me dizzy, nauseous, or experience pain. I absolutely hated the spinal tap the most! I just hate having to make choices to test or not to test. You are always left with the "what if it could help" questions. Darla Re: Neuro issues/EMG Hi, In terms of the EMG, if you have to do it, you have to do it, but, if you don't, it's something to avoid Maybe a 2nd opinion from a neuro who knows about mito before you put your child through the EMG???? My son has a very high pain threshold - never cries for blood draws, IV starts, etc., but he cried through the EMG. I have also heard from others that it is painful. My husband and I did it b/c we felt we had to, but, in restrospect, it gave us no new info. I felt very angry at the docs after we did it, b/c Asher experienced pain I know of others, though, who have made the choice to go ahead and do it and they did get important information regarding myopathic changes. Anne R - mom to Asher (age 3, complex III defect and possible complex I defect)Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

July 6, 2004

Dear Tammi,

I can only tell you what I have experienced. My story is long and

complicated. If you go on my daughter's website and read the long story, you

can get all the details. Anyways, I my older daughter, Samya died at age 8

and a half from mito. She was undiagnosed all her life, and when she started

having ataxia, dementia etc she was misdiagnosed with guillian Barre. The

only test the doctors did not do was a nerve conduction test. Althoug

painful, had they done it in the beginning, it would have ruled out their

diagnosis and led them to mito much sooner. She was sick for about 2 months,

and deteriorated very quickly. She was intubated for 33 days and then died.

A lot of her symptoms sound similar to your daughter's. They finally did the

EMG, which came back normal, showing the problem was not a nerve issue and

therefore was from the brain. Then they did an MRI, confirming mito. I wish

they had done the EMG sooner because we would have known how serious her

sickness was and enjoyed our time. Instead, 2 months of her deterioration

was wasted in search of a disease and the answer did not come until the last

week of her life and then quickly she died. Please read my story because it

is too much to say I an e-mail. I do think an EMG is important. It breaks my

heart now to know how painful it is because by the time they did it on

Samya, she was so weak she was not able to show any response. Poor baby, she

must have been in pain and could not express it. She was so weak the last 33

days of her life that she could not even open her eyes. Mover her head or

anything. Honestly, they could not do a darn thing to help her, We just

watched her die slowly and gave her pain meds to ease it. My prayers are

with you and best of luck to you. I do not know if this helps you at all but

I have to spreak up when I see similar situations. I am so sorry for what

you are going through. Has she actually been diagnosed with mito, and if so,

what form? The form should be able to explain some of the symptoms.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.Samya.org

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Re: Neuro issues/EMG