trailed off IVIG since 6/01

[Guest guest]

Hi everyone,

Well, we had 3 great months! The usual stuffiness but no infection and

headaches were mild.

It seems in the last three weeks he is making a turn in the other direction.

His teacher sent home this note last week

I am writing this letter in concern for 's health during the past eight

weeks of school. When he began the school year had far more energy than

he has now. The day is very long for . He appears exhausted by the end

of the day. His headaches are more frequent and his eyes have lost their

sparkle. By lunch he has dark circles under his eyes. At times he has

difficulty keeping his head up and he needs to lay his head down on the table.

He has been struggling with post nasal drip.....causing him to throw up

several days in a row. He has a cough thats worse at night due to the

dripping. Yes, we have his bed elevated. Glassy eyes you guys know the

routine.

I took him to our local Pediatrician ( we love him) he took one look at

and said he didn't look good. He put on nasonex and augmentin. He also

suggested that it may be time for his Immunologist at Stanford to be

contacted to consider putting back on IVIG.

He also found a spot on his soft palate that was dark blue in color. He sent

us straight to our local ENT (this is the ent that sent us to Stanford he is

wonderful).

Both sides of s nose was filled with heavy mucus and was cleared with

suctioning by the ent. The mucus didn't look infected. He believed the spot

was a retention cyst. Said to keep an eye on it and if it changes to come in

otherwise he would see us in a month to recheck. Then possible biopsy.

Well, last night my husband and I took a look at it and it seems it has

spread down the side of his throat. Not sure so we are taking him in this

afternoon to have it checked.

After being sucked out said , " Mom I can breathe thru my nose "

unfortunately it only gave a few days relief as he is stuffed again. Last

night he was up at 3:00 and 4:15 am in a coughing fit from the drainage.

The last two days he has complained that his hip hurts but this morning he

said it was fine. We are keeping a close eye as we have already experienced

Septic hip when he was 5, before he was diagnosed.

The amazing part is he is still having enough energy for gymnastics. He

comes home from school and rest for an hour then off to gym at gym he seems

to block out his body and do amazingly well! After practice he is exhausted.

We have discussed taking a break from gym while we are figuring out what to

do and he said NO WAY

Sorry this is so long I just needed to talk to someone who understands.

So glad you guys are out there. Well off to the doctor for

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01