Traveling Question

[Guest guest]

Has anyone traveled to Disney World w/ their PID kids lately? I'm not sure DW

will be able to provide us with any helpful/special accommodations, but thought

I'd see if anyone had any advice. Since the kids do not have a " typical "

disability (you can't tell by looking at them), it is probably not reasonable to

expect any modified treatment from DW--not even sure what accommodations they

could make that would make a difference (think they could put us in a bubble &

float us around?). The kids are looking so forward to the trip & I want to

provide the best situation for them as I possible can!

-

Mom of 6-yr-old boy/girl twins with PID

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Sat, February 13, 2010 9:31:33 PM

Subject: Re: Sinus surgery questions

Hi, My daughter is now 19 and had the surgery when she was 7. She is NOT immune

deficient but her brother has CVID. Both of the kids had HORRIBLE sinus

infections. Requiring IV antibiotics for 6 weeks each on several occasions.

A veteran ENT at Seattle Childrens Hospital told me that my daughter had the

worst sinus infection he had ever seen including the temperal sinuses. Which

from what he said they should not have been developed until the early 20's. I

did allow them to do the surgery you are talking about and then we did 6 weeks

of IV antibiotics and steroids.Within 6 months they had to go back in and she

has had 5 surgeries since that time. AND Sadly now has no health insurance and

cannot get any and has a NASTY sinus infection again. So... I have to say I am

not sure if it helped. I also believe it changed the bones in her nose/face to

some degree. Nothing supermajor but she has a bump on her nose that was not

there before. I would look into this ahead of time if I had it to do again.

It may be very necessary to clear your daughter out again for her current

infection. I would really consider taking her to a major medical center ENT for

a second opinin along with an Immune overview. The only thing we have found that

does work is the ongoing sinus daily rinses. We use the Grossan pulsating nasal

irrigator. It is MUCH better than the water pik in my opinion. It is designed by

an ENT.

I will have to say that because my kids are adopted and they both had these

serious infections we began to look for another cause. AND.... we found mold in

our attic that was getting into the furnace. (bad flashing on the roof) It was a

MAJOR nightmare and we are not sure whether that was the trigger for my son's

immune problems or not. ( he was a newborn). The EPA has a division in each

state that will check your house for free. Ours was called the Indoor Air

Pollution Authority. We were shocked when we found the mold since it was in the

garage attic and would never have found it on our own.

I know this is not good news but it atleast gives you one perspective. You may

have to get her cleared out good either way. Oh also we used pulmicort in the

nasal rinser and it helped much more than the nasal sprays since they gave my

son bloody noses. Feel free to contact me directly if you want to talk any

further.

BARBIE

____________ _________ _________ __

From: beyeafamily <debeyeaverizon (DOT) net>

groups (DOT) com

Sent: Sat, February 13, 2010 12:33:50 PM

Subject: Sinus surgery questions

I know several of you deal with recurring sinus infections in your kiddos. I've

posted before about my 8 yr old daughter with the severe sinus issues.

We've been working with our ENT, who gave us a few options. Basically, even

though she is on IG replacement, has been on Augmentin for 5 weeks, doing nasal

sprays/rinses, etc. she still 'looks terrible' on her sinus endoscopy this past

Thursday. He says that her sinuses are completely occluded. On an MRI that she

had, it showed extensive damage to her sinus areas, that has progressed quite a

bit in this past year since her last MRI. One of the options he gave us was him

going in and doing a surgery that will open everything up (her largest problem

area is her temporal sinuses) drain everything, and put antibiotics right into

the affected areas.

The surgery would last about an hour and a half, and carries quite a bit of

risks, not to mention that's a long time for a mito kid to be kept under

anesthesia. Her last sinus surgery with anesthesia she had pneumonia/partially

collapsed lung following the surgery, so both us and ENT doc are concerned about

those risks.

I guess my question is has anyone had this done, and did it help? Did it give

only temporary relief or has it been a huge success? We really don't know what

to do. Obviously what we are doing has not been working, and it is really

affecting her quality of life. She has been having horrendous headaches which

leave her barely able to get through the day.

Also, has anyone found a reason besides the immune deficiency to explain severe

and extensive sinus damage despite being on Immune replacement?

thanks

a

mom to 4 wonderful girls, dealing with Mito, Eos, g-tubes, seizures, immune

deficiency, etc.