Re: Lucas off of IVIg

[Guest guest]

Lucas has not been doing well off of his IVIG. He has had a severe

sinus infection since before his last infusion in April. He had 3

antibiotics. The first for 21 days. Then an allergic reaction to

Septra with hives. and then on Ceftin for 21 days. He has been off

of the antx for one week and already has fluid in his ears and is

getting congested again and has green drainage in his sinus rinses.

(He uses saline as well as s solution to flush is sinuses 2-3

times a day) He is very tired and has not been in school for atleast

a month. WE have decided to just keep him home until the fall to

reduce his overall stress to his body. He is also having alot more

allergy symptoms overall. He noticed the difference on an off of

IVIg. One thing that is nice is that he is able to tell us things

that he could not when he was 4 years old before he was on the IVIg.

So it is quite the learning experience. I think his doctor is very

aware of the changes and is watching him closely. ONe of the reasons

we took him off and did this at this time was because was

complaining about the sticks. He has not needed a port since he has

such great veins but was getting to the point that he did not want

to come in. We should be at the 100 days some time late July and

will then vaccinate him after drawing pretiters and then wait 3

weeks and see where he is. We will alse draw a full panel at that

time.I want really get a good list from IDF so we can be conclusive

while he is off. This will be the one and only time that I will let

him be off if he comes back low. I did not mean for this to be so

long. but I guess he has alot. BARBIE

Mom to Lucas, CVID, ASthma, Sinus infections, Bipolar