Re: Severe Allergies and CVID and Edema

[Guest guest]

My son Lucas has lots of allergies as well. But he seems to be moderated due to

the consistent Sub Q Gammaglobulin. He is allergic to 13 meds including 4

classes of antibiotics. Many environmental allergies showed up before he was a

year old and he was 4+ to many ,many things. I wonder can you get sub Q since

it seems to be tolerated better in a great # of people? Anyway we were told NOT

to do any allergy shots because of his immune system . They talked about the

dysregulation of all the different components of the immune system and that the

shots would make things worse. I am in Tulsa and we have a good Immunologist

here and she does lots of Asthma work. Her name is Dr.Jane Purser. I wonder if

you could get in to get a 2nd opinion. Feel free to contact me offline if I can

help. Our original Immunologist up in WA state was from National Jewish in I

think Colorado and they trained together. I think he was one of her professors

although she seems to be

about his age. She came highly recommended. I would be willing to try to get

you in if you are interested. Tulsa is not the greatest on healthcare but I do

like her very much. Very good at explaining things and very thorough.

BARBIE

Severe Allergies and CVID and Edema

My 10 yr old son, Henry, is really suffering and we are struggling to find a doc

to help him. He has severe edema - all over his body chronically and then his

face will swell more episodically. He has gained 10lbs since Jan. He has had

complete workups by other specialists but we are hitting a wall with

allergy/immunology which is the speciality everyone seems to think he needs. He

has been tested for Hereditary Angioedema but the results are not in yet.

Henry was getting IVIG at an outpatient clinic through an out of town

immunologist b/c we could not get into a local doc (we live in Houston, TX). He

can no longer get IVIG outpatient due to his severe swelling so we are trying to

get in with a local immunologist who can do IVIG inpatient. The wait for an

appointment is ridiculous.

We are also now thinking the edema may be allergy related. We went to New

Mexico last week and he felt terrific and lost 6 lbs! He had less allergies

there as well - he still coughed some but here in Houston, he is constantly

miserable. His IgE was fairly high last time it was drawn - almost a year ago -

I think it was around 650. He does have CVID also and has received allergy

shots for years. He is on daily allergy/asthma meds as well as Benadryl on a

very regular basis.

I am so frustrated and sad for him!!! We are considering a move to New Mexico

as it seems he is allergic to everything here in Houston.

Does this sound familiar to anyone? Does anyone have a child with severe

allergies and CVID?

Thanks!

Betsy - mom to Henry - 10 yrs old - CVID, Fatty Acid Oxidation Defect (metabolic

disorder), edema, allergies, asthma, epilepsy

[Guest guest]

-Hi Betsy.. we are having a similar problem as well.. CVID, LCHAD.

MITO ... my son who is 5.. is suffering from weight fluctuations as

well.. Ige is high... etc ..systemic swelling .. but most noticable

inthe face..and hands..

We have seen EVERY specialist.. and they are saying it is

autonomic .. not sure if this helps..

I have noticed that more fluids.. are better..maybe it is an FOD

thing..not sure

Warmly Kathleen

-- In , Betsy Furler <bfurler@...> wrote:

>

>

> My 10 yr old son, Henry, is really suffering and we are struggling

to find a doc to help him. He has severe edema - all over his body

chronically and then his face will swell more episodically. He has

gained 10lbs since Jan. He has had complete workups by other

specialists but we are hitting a wall with allergy/immunology which

is the speciality everyone seems to think he needs. He has been

tested for Hereditary Angioedema but the results are not in yet.

> Henry was getting IVIG at an outpatient clinic through an out of

town immunologist b/c we could not get into a local doc (we live in

Houston, TX). He can no longer get IVIG outpatient due to his severe

swelling so we are trying to get in with a local immunologist who can

do IVIG inpatient. The wait for an appointment is ridiculous.

> We are also now thinking the edema may be allergy related. We

went to New Mexico last week and he felt terrific and lost 6 lbs! He

had less allergies there as well - he still coughed some but here in

Houston, he is constantly miserable. His IgE was fairly high last

time it was drawn - almost a year ago - I think it was around 650.

He does have CVID also and has received allergy shots for years. He

is on daily allergy/asthma meds as well as Benadryl on a very regular

basis.

> I am so frustrated and sad for him!!! We are considering a move

to New Mexico as it seems he is allergic to everything here in

Houston.

> Does this sound familiar to anyone? Does anyone have a child

with severe allergies and CVID?

> Thanks!

> Betsy - mom to Henry - 10 yrs old - CVID, Fatty Acid Oxidation

Defect (metabolic disorder), edema, allergies, asthma, epilepsy

>

>

>

[Guest guest]

Does he have hives with swellling?

Janet, mom to Brittany age 17, CVID, Urticaria & Angioedema

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