New Dx of Mito and Immunodeficiency

[Guest guest]

Hi, I'm we live in Indiana. My 10 y.o. son Conner was diagnosed

with mito yesterday, we are waiting for an appt in Atlanta to see Dr.

Shoffner. The diagnosis was based on labwork and his developmental history,

which includes slow, but progressive, muscle weakness. Today we started

CoQ10 and Carnitor. We will begin workup on our other children shortly. The

troubling thing is that Conner was also recently diagnosed with an

Immunodeficiency (CVID). We are seeing an immunologist in Cleveland and

will be starting IVIG therapy soon. Conner's immune system isn't really

functioning at this point (or at least very little function) and has been

mostly homebound due to his risk of life-threatening infections. I was

wondering if there are other families here dealing with both a mitochondrial

disorder and immunodeficiency? Thanks in advance for any and all info!

Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and

CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

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[Guest guest]

Welcome .

My name is and I live in western KY. Where in IN do you live? My dad works strictly in IN. I have a mitochondrial disease and also an immune deficiency although not as severe as you describe your son's to be. I see an immunologist in Cleveland as well by the name of Dr. Hostoffer. He is great. He prescribed IVIG for me and I recieved it for about 4 months. I had severe aseptic meningitis headaches from it so it was discontinued by my mito doc. There are many on this list whose children recieve IVIG and have overlapping mito Dx and immune deficiencies. I feel certain you will get quite a few responses and alot of good support.

[Guest guest]

Hi ,

I see you did find your way to this list! Nice to see you here, although the reasons are not so easy. As you've read on the PID list, we deal with primary immune deficiencies as well as mito in our family.

You'll get lots of encouragement and ideas here.

Anne R

[Guest guest]

,

Welcome. I have a 4 and 1/2 yr.old with mito and immuno def (IGG)

who sees Dr Berger in Cleveland and recieves IVIG with great

results. Normally she has been admitted about every one to two

months for staph infections and (knock on wood) she hasn't had one

since Decemeber (Started IVIG in March). I too have mito and immuno

def. I am able to just take one antibiotic a day and do just fine

right now. Glad you are here, but sorry you have to be!

Dawn-Mito,POTS,syncope,immuno deficiency,coq10deficiency

migraines mom to:

Drew:(13)Probable mito:dysautonomia, hypoglycemia

:(4) Mito, PDD-NOS, GAIII,Dysautonomia, bone marrow

failure, cardiomyopathy, sinus tachycardia

Molly: (3)Probable mito, dysautonomia, hypoglycemia, fever of

unknown origin x 8 weeks, tachycardia, multiple food

sensitivities

[Guest guest]

> Hi ,

Myslef as well as my three kids all have mito and

immunedeficiency. IgG, Ig4, IgA and IgM as well as failure to

produce antibodies.

we do IVIG every two weeks. It has kept us fairly well, except for

the viruses..

best to you

[Guest guest]

Welcome . My son Wyatt, 5 1/2, has complex I and is immune

deficient in IgG1, IgG2, total IgG, and does not form antibodies to

vaccinations. He was diagnosed this summer with the immune

deficiency. He is currently on amoxicillian to try and ward off any

infections. If he does develop one we will then put him on a

stronger antibiotic. If he should end up with pneumonia this year he

will start to receive IVIG or the shots. If you have any questions,

post and someone will answer. There are quite a few of us who deal

with mito and a primary immune deficiency.

Geri-Anne and Wyatt, Complex I

> Hi, I'm we live in Indiana. My 10 y.o. son Conner was

diagnosed

> with mito yesterday, we are waiting for an appt in Atlanta to see

Dr.

> Shoffner. The diagnosis was based on labwork and his developmental

history,

> which includes slow, but progressive, muscle weakness. Today we

started

> CoQ10 and Carnitor. We will begin workup on our other children

shortly. The

> troubling thing is that Conner was also recently diagnosed with an

> Immunodeficiency (CVID). We are seeing an immunologist in

Cleveland and

> will be starting IVIG therapy soon. Conner's immune system isn't

really

> functioning at this point (or at least very little function) and

has been

> mostly homebound due to his risk of life-threatening infections.

I was

> wondering if there are other families here dealing with both a

mitochondrial

> disorder and immunodeficiency? Thanks in advance for any and all

info!

>

>

>

> Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma,

GERD, and

> CVID),

> Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

> Evan (10, mild hearing loss/unaided),

> and Kelsey - surviving triplet (8, hearing - but not listening!)

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today -

it's FREE!

> hthttp://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Thanks for the welcome (and thanks to Anne for giving me the link to UMDF

many weeks ago)! I am really surprised by how many families are dealing

with both disorders.

We see Dr. Melvin Berger in Cleveland, we chose him because we eventually

want Conner to use subcutaneous IG therapy and Dr. Berger is one of the few

in the country doing this. If Conner is going to need IG replacement for

the rest of his life then I want it to be on our terms. The subq IG needs

to be done more frequently, but we'll be able to do it at home AND avoid

some of those nasty side effects. It's a 7 hour drive for us (we live north

of Indianapolis), but we feel it's worth it.

By the way, the metabolic doc did put Conner on Carnitor and CoQ10.

Thanks again and I apologize in advance for the many questions I'll be

asking!

Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and

CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

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[Guest guest]

,

Have you met Berger? I really like him alot. He cares for

(immunodef) and myself (immunodef) and my other daughter Molly (food

sensitivities). He is very nice and his staff is great too! good

luck and if you need anything, just ask!

Dawn

[Guest guest]

Hi Anne,

I am new to this board as I also belong to the I along

with my 2 children have mito. My 19 year pld son is more severe he

also has severe dysautonomia and severe cyclic vomiting syndrome and

immune defiencies. My 15 year old daughter has a moderate degree of

dysautonomia, migraine headaches and was just dianosed with immune

dificiencies and is lactose intolerant. I am starting to have an

increase of symptoms take care.

Donna

> Hi ,

>

> I see you did find your way to this list! Nice to see you here,

although

> the reasons are not so easy. As you've read on the PID list, we

deal with

> primary immune deficiencies as well as mito in our family.

>

> You'll get lots of encouragement and ideas here.

>

> Anne R