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[Guest guest]

Barbie,

Welcome to the group. My son is 9. He was diagnosed with CVID when he was

5. He also has chronic sinusitis, asthma, and reflux. He has been receiving

infusions since this time. He has had 2 Port-a Caths. Right now he has

chosen to have his infusions intravenously (His last port quit working and

has been removed.). We still use Emla cream. Isaac's nurse comes to our

home. We have the same nurse for every infusion. When his infusions started

he was terrified. This has improved. He also receives some small rewards

for each infusion. Usually, he wants a couple of dollars since he enjoys

money. Now, after he is " hooked up " he smiles and says to his nurse, " I see

that you didn't kill me yet. "

In regards to the side effects of infusion drugs, I have received printed

information from the company that makes Isaac's drug and the pharmacist that

supplies the infusion nurse. As a matter of fact, there was a time when he

suddenly started having reactions. I called the drug company and they were

more than willing to take time and talk to me. I even ended up talking to

one of the people who were instrumental in developing the specific drug he is

infused with. They even had someone call me back after his next infusion and

check on how things were going. After all, they want our business.

Unfortunately, it all comes down to money and customer satisfaction and I'm

going to take advantage of this service.

When he was initially diagnosed he was so sensitive to noise, motion, taste,

and touch he was seeing an OT and working on motor and sensory issues. This

helped, but for him the main thing was finally being diagnosed and treated.

Things started to improve slowly when he wasn't ill all the time. Now, he is

9. This is the first year at school that he has tried school lunch (2

times). He has also started eating some sandwiches in his lunchbox.

Usually, it was cheese, crackers, yogurt, and juice. He still eats a

selection of foods that are comfortable for him. We believe this is due to

the fact that he spent the first 4 years of his life vomitting. When we met

with specialists at the " Feeding Clinic " they said he had a food aversion and

in time it should improve and it has.

Take care.

Kathy, mom to Isaac

[Guest guest]

Hi Kathy I wrote you a nice long reply and then promptly deleted it. I am

amazed at the simularities of all of these children. I feel like we have

been in a vacuum for the past 5 years. It has been almost impossible to get

any information. I did contact IDF and talked one person who was very kind

but our doc kept saying he will grow out of it . I didn't push for a

diagnosis unitil we almost lost him.

Lucas had a feeding aversion from only a couple of months old. He gained a

lb a week to start with and I could not fill him up and then he just quit

eating and was FTT at 4 months. He cried and cried after each feeding. I am a

feeding specialist but could not get him to start any solids until he was

almost a year old. I could never feed him with a spoon and as I told someone

else we found goats milk formula is what helped him. I am not suggesting for

anyone to go out and get goats milk but we were down to nothing for him to

eat at all. I made up a formula so he could grow and he did OK. I am so

thankful to hear each of your stories because it helps me to understand Lucas

a little better each day. BARBIE

[Guest guest]

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