Gamaglobulin for mito disorders is this done

[Guest guest]

My 15 year old daughter has a mitochondrial disease. She gets sick

often and every little thing pulls her down so much. Her

pediatrician was curious about whether or not they use gamaglobulin

to help with kids like her. I have never read anything about it

with the Mito. I myself took gamaglobulin shots for two years when

I was a baby because I stayed sick and in the hospital. I didn't

know if they even did these anymore. Can anyone help me with this?

Pat

[Guest guest]

I'm surprised you have not received many responses to your question.

There are quite a few people whose children receive IVIG due to being

immune deficient. My son does not receive IVIG but is on

amoxicillian to try to prevent illness. If his immune system

continues to fail we will have to start IVIG or start doing the

shots. Our geneticist told us that it is common for mito patients to

have immune problems. Hope this helps.

Geri-Anne and Wyatt, complex I-

-- In Mito , " patsparks66 " wrote:

> My 15 year old daughter has a mitochondrial disease. She gets sick

> often and every little thing pulls her down so much. Her

> pediatrician was curious about whether or not they use gamaglobulin

> to help with kids like her. I have never read anything about it

> with the Mito. I myself took gamaglobulin shots for two years when

> I was a baby because I stayed sick and in the hospital. I didn't

> know if they even did these anymore. Can anyone help me with this?

>

> Pat

[Guest guest]

Hello Pat

The Gamaglobulin has been used in Mito disorders for many purposes

such as immune system issues as well as GI issues. It is referred to

as IVIG, however, it is very difficult to obtain due to expense and

lack of supporting medical literature specific to Mito. The Mito

families that I know who have been able to obtain IVIG have seen

phenomenal results.

Sincerely,

Bridget--

- In Mito , " patsparks66 " wrote:

> My 15 year old daughter has a mitochondrial disease. She gets sick

> often and every little thing pulls her down so much. Her

> pediatrician was curious about whether or not they use gamaglobulin

> to help with kids like her. I have never read anything about it

> with the Mito. I myself took gamaglobulin shots for two years when

> I was a baby because I stayed sick and in the hospital. I didn't

> know if they even did these anymore. Can anyone help me with this?

>

> Pat

[Guest guest]

Bridget,

and I both have immune def related to mito (low IGGs) have

they tested her for an immuno def? has recieved IVIG for this

since February and it has been amazing. She usually gets sick four

to five time s a yr requireing an antibiotic and has 3-4 staph

infections in her central line. Since starting this treatment she

has not been sick one time! (I hope I just didn't jinx it). It is

about $1200 a dose. She recieves it every three weeks. Because she

has a diagnosed immunodef ther insurance pays for it. I have taken

one antibiotic a day and have also seen amazing results. There are

some risks to taking the IVIG-one of which is aseptic menengitis

which is an inflammation of the brain after the infusion. I know

that some who have tried it here on group have had this. It causes a

severe headache and vomiting for a couple of days after. WE pre and

post medicate . Let me know if you have any other questions.

dawn

[Guest guest]

Thanks for the information. 's IgG and IgA levels are on the

low end of normal but her IgM level is below the low normal. She is

sick all the time. She never makes it a full week of school. She

has been in the hospital with ear infections. She hasn't been

officially diagnosed with an immune problem so I don't know if the

insurance would pay for this. We don't go back to Dr. Cohen till

next summer. Her pediatrician wants me to discuss it with him.

Thanks again for all the information.

Pat

-- In Mito , " thefourofus03 "

wrote:

> Bridget,

>

> and I both have immune def related to mito (low IGGs) have

> they tested her for an immuno def? has recieved IVIG for

this

> since February and it has been amazing. She usually gets sick four

> to five time s a yr requireing an antibiotic and has 3-4 staph

> infections in her central line. Since starting this treatment she

> has not been sick one time! (I hope I just didn't jinx it). It is

> about $1200 a dose. She recieves it every three weeks. Because she

> has a diagnosed immunodef ther insurance pays for it. I have taken

> one antibiotic a day and have also seen amazing results. There are

> some risks to taking the IVIG-one of which is aseptic menengitis

> which is an inflammation of the brain after the infusion. I know

> that some who have tried it here on group have had this. It causes

a

> severe headache and vomiting for a couple of days after. WE pre and

> post medicate . Let me know if you have any other questions.

>

>

> dawn

[Guest guest]

Thank you for the information.

When I was little I took the shots of gamaglobulin. Once every two

weeks I would have to go in for one of these shots, for two years.

My mom says that when they would take me in I was so sick that I

could not hold my head up. After the shot I would get better for a

few days then start to go back down hill until the next shot. My

concern is will this kind of thing happen with my daughter. We

haven't had any testing for immune problems other then the immune

test Dr. Cohen did with her Mito tests. We will go back next summer

to see Dr. Cohen unless something happens between now and then. Her

pediatrician here is curious about the gamaglobulin, he wants to try

anything that might help her to stay well longer. Since she went on

the Mito cocktail she has done better, but we still have at least one

day out of a week that she is just too sick to go to school. Ear

infections can put her in the hospital. She's 15 and starting high

school and every bug that goes around she gets. For the past three

years most of the time is spent on home bound. If we can prevent

that then it would be wonderful.

Thanks again for the information.

Pat

> > My 15 year old daughter has a mitochondrial disease. She gets

sick

> > often and every little thing pulls her down so much. Her

> > pediatrician was curious about whether or not they use

gamaglobulin

> > to help with kids like her. I have never read anything about it

> > with the Mito. I myself took gamaglobulin shots for two years

when

> > I was a baby because I stayed sick and in the hospital. I didn't

> > know if they even did these anymore. Can anyone help me with

this?

> >

> > Pat

[Guest guest]

Thanks for the information.

We have been talking about the use of a daily antibiotic to try to

keep well, or the gamaglobulin. We won't go back to see Dr.

Cohen till next summer unless needed before then. We haven't had any

testing for the immune problem except what was done when she had her

testing for the Mito. Her IgM level was below normal low. She had

it redone a few months later because a different doctor thought maybe

it wasn't an accurate result and that time it was even lower. Dr.

Cohen hasn't suggested anything yet. Try to avoid sick people to cut

down on infections, this is hard when you go to school with 2300

other kids. We'll keep researching this and discussing it with her

Dr. here at home. Thanks again for your help.

Pat

> > My 15 year old daughter has a mitochondrial disease. She gets

sick

> > often and every little thing pulls her down so much. Her

> > pediatrician was curious about whether or not they use

gamaglobulin

> > to help with kids like her. I have never read anything about it

> > with the Mito. I myself took gamaglobulin shots for two years

when

> > I was a baby because I stayed sick and in the hospital. I didn't

> > know if they even did these anymore. Can anyone help me with

this?

> >

> > Pat