New member looking for input - long

[Guest guest]

Hi. I recently joined up and having been lurking and reading

messages. I could really use some experienced input for my daughters.

The two that are having the most troubles at this point are my 11 and

7 yr old.

My 11 yr old has had a history of chronic sinusitis. She also has

Eosinophilic Gastroenteropathy and a Mitochondrial Disease. Because

of her gut conditions, she doesn't tolerate oral abx well, so we try

to avoid them or be creative about administering them. Generally,

when she is sick with something that absolutely has to have abx, we

will admit her and do them IV. She has had a picc line placed before

because of the severity of her sinus issues, and did IV abx for a

month.

She has been sick for about 2 months with severe sinus issues again,

and all the rinses, etc. that we do were doing nothing for her. The

ENT cultured and she grew out a somewhat resistant stubborn, gram

negative bacteria, so she is back on a picc line with IV abx. Because

of multiple infections in the past, there has been talk of immune

deficiency. I mean, with the Eos problem, it's pretty obvious her

immune system is messed up - but what do we do about it? Mainly just

treat symptoms as they arise.

She has had IG levels tested and all come back normal. So no one

really knows what to do with us, except for managing symptoms and

crises as they arise.

My 7 yr old, on the other hand, is a mess with chronic infections.

Her main problems are also in her sinuses, although she also gets

frequent croups, and upper respiratory junk. She also will get fevers

of unknown origin. Her sinuses have been bad enough to have sinus

surgery twice. Both times, the cultures grew out at least 3 bugs, and

at least one of them was a resistant strain of something. Her last

sinus surgery ended up in the hospital for 4 days with pneumonia.

She is constantly on abx (can take them orally, thank God!) and as

soon as she gets off of them, within days she is sick again. She has

had yeast and fungal infections as well. She has had Immune testing

done in the past. Once we got an IgG2 level that was low, but since

the rest was fine, they said to not bother with it, that she was

probably just sick at the time. She has been tested for CF too, and

that was negative. (sweat test)

We spent last winter on maintenance abx for the duration of the

winter, because of her being so sick. It did help, but didn't

completely eradicate the problem, and she ended up with a roaring

sinusitis anyways, that required surgery to open it up and drain it.

Both girls get completely closed over in their sinuses, and both show

ppolyps and muscosal changes, etc.

So, we had a doc who mentioned IVIG for the 7 yr old, but since the

latest round of IG testing came back low normal, they don't want to

do anything but keep treating with more abx. We are against doing

abx all winter again, since we feel it caused the yeast problems and

didn't work before anyways. We do cycle through abx, and use

different types to treat. She does the best on Septra - a sulfur drug.

We finally made an appt with the only ped immunologist in the area,

which is in about a month. I would like to be prepared the best I can

for this appt and know what I need to ask. I have been told that this

guy probably won't be able to help us, as he is very fundamental and

by the book.

Does this sound like immune problems that anyone else has experience

with and can help us? It's like living a nightmare...constantly

having the girls sick all the time. We spend so much time at the

peds, and they seem to pick up every germ that floats by. It also

seems like they hold onto them and won't get rid of them, like other

people do. A simple cold will always turn into respiratory issues for

them.

I sure would appreciate any help that you can give!

Thanks for reading all of that!!

a

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