Finishing Up IVIG Tonight

[mama2alex]

Just wanted to update everyone. Alex was diagnosed with Specific Antibody Deficiency by a doctor at Stanford a few weeks ago. He prescribed monthly IVIG for a 4 - 6 month trial, and he agreed to give an initial large dose (2g/kg) for PANDAS. After finally getting approval from our insurance co a few hours before our appointment, we came in yesterday afternoon. Things went very well - there were no issues.

 

Today, our appointment was at 6pm and things didn't go as well as yesterday. When they tried to insert the IV, they blew a vein, which was very painful, and he got extremely upset. By this time it was almost his bedtime and he'd had 7 hours of sleep the night before (needs about 10). Four hours, five needle sticks, two blown veins and one tin of YuGiOh cards later, they got it in. They started the infusion around 11 and are going to let us spend the night.

 

My main concern now is that he started to get congested tonight. I've had a cold for two weeks and thought I'd been able to keep it from him, but maybe not. Is this going to ruin the effect of the IVIG for us? He is one of those that gets worse with some viruses. Any advice on this would be appreciated.

 

Jennifer

[nevergiveup]

No. The ivig should take care of any little cold. Thats what it does, no more colds for him for a long time. Hows his head??? Cold wash cloths helped my dd headaches. I hope his side effects are minimal.

[sf_mom]

Yep, cold should resolve itself fairly rapidly.... So glad to hear first IVIG is behind you.

 

-Wendy

[mama2alex]

Thanks! I'm so glad that's the case.

 

He woke up this morning with a fever of 101.5, bad headache, body aches and vomiting. We were surprised by all of day two's problems after such an easy first day. They gave him tylenol, IV fluids and yes, a cold wash cloth on the forehead. He's feeling much better now, and we should be heading home soon.

 

Maybe this weekend I'll sleep.

[nevergiveup]

He had a very high dose. Panda kids usually react this way after the second dose. I am surprised you are surprised. The higher the dose the most likely you will get flu like symptoms. Keep forcing the liquids helps with headaches. I read a recent article about IVIG and it said force fluids up to thirty days post due to the impact on the kidneys. I am sure this is more for the adults but I am careful to make sure my dd drinks at least 8 glasses a day. Since your son is getting this every 30 days he will need regular liquids. Also what is his monthly dosage? We are trying to switch our dd monthly dose to Fridays because it sets her school work back if she misses three days per month and she is also still fatigued when she returns that whole week. Hard on testing and social life. I am glad your going home. I am glad his headache is better it can be pretty painful. I hated that part.

Thanks! I'm so glad that's the case.

 

He woke up this morning with a fever of 101.5, bad headache, body aches and vomiting. We were surprised by all of day two's problems after such an easy first day. They gave him tylenol, IV fluids and yes, a cold wash cloth on the forehead. He's feeling much better now, and we should be heading home soon.

 

Maybe this weekend I'll sleep.

[ShaesMom]

(((HUGS)))

 

My dd had very severe side effects that lasted about a week. We kept up the Ibuprofen and Benadryl for a week. She also had a shot of Prednisone and got an rx for Imitrex for the headache. These two things seemed to help the most. Hydration is very important as well.

 

Hope he is doing better today!

 

Sam

[EAMom]

Yay! I'm so glad that's over

 

My dd also got the 2gm/kg dose over 2 days...she had flu like symptoms for the following 2 days. Then for the next week her PANDAS symtpoms seemed WORSE...then week by week things improved.

 

Keep up the tylenol/benedryl round the clock for the next 3-4 days (or more if needed) for the headache/fever. You could probably add on some ibuprofen as well.

[mama2alex]

Thanks everyone. He's much better tonight. Back to eating like a horse, but still sticking to softer foods. Fever resolved this morning after Tylenol and IV fluids. His headache is on and off, and mild. I will keep him on the Tylenol for a few days, or at least til he seems to have fully recovered. No Benedryl for us as he had an adverse reaction to it last week.

 

The nurse said, and it sounds like from your experiences, that his reaction was pretty mild. The nurse this morning felt that he got dehydrated overnight because he basically slept through the whole infusion and obviously didn't drink anything during that time.