IgA deficiency-Help please

[Guest guest]

If you were to go to a CCF satelite location for your primary pediatrician, they would be able to get the records from the main campus. All of our kids go to the Westlake branch for there pediatrician (Dr.Kalata, we love her). It is really nice because she can easily get bloodwork and other labs right in the office. Also she is just an email, or phonecall away from Dr.Cohen or any of Gracies specalists.

I don't know if this is an option for you, but it is highly reccomended if available.

Best wishes

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[Guest guest]

Tammy,

I don't post much but my son sees Dr. Hostoffer an immunologist in Cleveland that Dr. Cohen recommended. He is wonderful. I know used to see him. If you want his number let me know.

He has helped keep my son aliveTammy wrote:

Dear Listfriends,

I am coming to the experts. Our son (5 yo) with mito and FOD has struggled with his immune system all of his life. The last several weeks have been worse than ever and we are not able to clear up infections. I got a call today from the neuro who drew immunoglobulins the end of Jan his IgG was 800 (no 683-1400), IgA low at 30 (nl 41-?), IgM nl wasn't given the number. His infections over the last several weeks included Clostridium diffacile (?sp) intestinal bacteria treated with Flagyl and probiotics and still present on culture, Strep piaginase from the ear treated with drops and IV Rocephin sill not cleared up, Beta hemalytic Strep A from the ear treated with omnicef and ear drops still not cleared up, continuous cough, sinus infection, and now has developed a wicked rash all over his body going to the peds (recently switched to her and she has never seen him) in an hour? Any insight about where to go would be very helpful? He has

had immunization titers for tetnas done and has no immunity. He was seen once in Cleveland for immune work up and I called there and they will not help us because it was over a year since his last appt. We go to Cleveland regularly to see Dr Natowicz, ENT, and Neuro-opthalmology, in fact we have to be there next week, but of course Immune doctor is...out of town...

Any help of suggestions would be appreciated.

Tammy-Madelaine and iel's mom

Do you Yahoo!?Yahoo! Search presents - Jib Jab's 'Second Term' Please contact mito-owner with any problems or questions.

Donna Noble __________________________________________________

[Guest guest]

Tammy,

My suggestion would be look up on the Immune Deficiency Foundation website (just

type in that name under a search and you should find the USA site - if that

doesn't work, type in Primary Immune Deficiency Foundation) and look up under

the scientific board members and see if any of them are in your area.... ALSO,

there are some pretty active chapters of the Immune Deficiency Foundation (or

Primary Immune Deficiency FOundation, sorry, can't remember) in many states so

you could find the chapter in your state, get the name of the leader and call

and find out which doctors they've had good experiences with.

The IgA deficiency is concerning as that is the body's first defense (in all of

our mucous membranes -nose, lungs, mouth, intestines, etc.) but I would imagine

the doctors bigger concerns would be the lack of antibody titers made to

tetanus... that suggests that, even if the IgGs are there (did they test the

levels of IgG subclasses: IgG1, IgG2, IgG3, IgG4? - that's a very important

test), the IgG's aren't working right as they are not making antibodies to

common bacteria. Did they see if he made any antibodies to the pneumovax,

prevnar? Those kids who don't make a decent amount of antibodies to the

pneumovax,prevnar have a lot more trouble with upper respitory infections. I

would imagine that any true immunologist (not to be confused with your

" ordinary " allergist/immunologist - they tend not to specialize in immunology)

would be looking at IVIG (gammaglobulin given by IV or subcutaneous) given the

type and number of infections AND the lack of response to the tetanus vaccine.

FYI - Both my older son and I have IgA def. and IgG2 subclass deficiency and my

younger son has mito (and we are recently finding that one of his IgG subclasses

is deficient....)

Anne R