HI Everyone-

My son received his first infusion on Friday and became extremely ill on Saturday with a severe headache- pulling at his hair and vomiting. Has anyone had this reaction and if so what did the docotor do to alleviate the problem?

Thanks- Matt's mom

My daughter recieved an IVIG treatment for Kawaski disease On May 2nd of this year.She reacted awful.She started running a fever throwing up lathargic.They did a spinal tap on her and it came back aseptic menegitis that they think was from the IVIG.She remained in the hosp for 4 more days after that.If he doesn't improve you should talk to your doctor about running some tests if they haven't already.What is he having IVIG treatments for?Take care and I hope things get better Heather

HI Heather-
Matt was diagnosed in August with selective antibody immune deficiency-basically- cvid. I spoke to the IV nurse last night and she told me the doctor wants to do the IVIG again on the 27th with no pre medication again. He became dehydrated and had terrible headaches and vomiting. I could not even sleep thinking that he has to go through this again.

He is starting to display some anxiety already- not wanting to go to school or be away from me. How did you know to bring your daughter in for the testing?

Thanks- Bonny

Kawaski disease is when the immune system attacks itself instead of the virus.It can cause anurism in the heart.It took 9 days before they knew that she had this.I took her to urgent care because she had a rash and fever.I was told it was just a virus,she wasn't getting any better,wasn't eatting so I took her to the ER told again just a virus,took her to her doc told again it was just a virus,was sent to a dermotolgist who said the same thing.They next morning her fever was 104,her lips were dried and cracked her tongue was bright red and her hands and feet were swollen so we went to childrens ER and they ran some tests and then admitted her it still took 2 days before they sure what she had.It is very rare the hosp we were at only sees about 12 cases a year.The IVIG cut her chances of having anurism and so far all of her echos and all of her ekg have eebn good she has to follow up with Cardio until next May.
I understand your soon being nervous,I know how my daughter reacted to it she felt awful.I hope that his next treatment goes better.I don't know if they mention it to you or not but once you've had IVIG if they run tests for other viruses you can get false pos results for up to 8 weeks.Did they take blood from him to store so if they needed to run any addition tests they would have it?How long will he have to have the IVIG treatments? Good luck hang in there Heather

Hi Heather-
Wow that is some story about your daughter. Thank goodness you were smart enough to know something was really wrong. Noone ever explained to us that the ivig will effect his test results. I guess we will have to see now that it is too late to reserve any blood.

They are saying that he will need the infusion therapy for two years- every three weeks!! I am glad that your daughter is doing better but I am sure you have the constant worry that I have- it never really leaves.

Thanks for your support- Bonny

Wow two years of treatments,make sure during that time that you find some time for yourself too.It's not selfish to take some time to recharge yourself so that you can be there for your son.If you need anything I'm here,I know how hard it is to care for a child that is ill and the stress and helpless feeling that can come with it.Take care Heather

Hi Heather-

Yes, two years, at this point, seems like a life time for me. I am so worn and can burst into tears every time I think about it. I feel so bad for my son and yet you have to keep a normal balance in the family because I have my daughter as well. Unless you have a chronically ill child noone understands what the family is going through. Even when he is not sick I am so wooried about when the other shoe is going to fall. It is like I can't ever relax.
Do you have any other children? My daughter had been so great about handiling everything. I try to give her some time with just her and I .

Thanks again for your support.
Bonny

It is hard like you said even when they are doing well.I recall the first two weeks she was home from the hosp I hardly slept because I was told that if she was going to have an anurism and if it were to burst it would be while she was sleeping.So I found myself in her room at least 20 times a night to make sure she was still breathing.Yes I have two other children.The youngest one that was sick was 21 months old at the time.My other two girls are 10 and 13.I had alot of family support that I was very thankful for.But it is exhausting.Again if you need anything let me know.Hang in take care Heather

Matts Mom - I understand your fear....the 'cure' plain old isn't supposed to do this. What were the pre-meds? Can I ask? Mine at first for IVIG were 2-3 tylenol & 1 Benedryl...due to various things, It's now 3 benedryls rite before starting...should knock out an elephant, but, nope...fight it every step of the way!
It sounds like Matt had a reaction, most of which are normal, except for the extremeties of them... Do you have hospital infusion or home? How the stuff is stored prior to infusion is strictly controlled.....until it gets to the point of being dispensed to US! Web up 'FDA-blood products' and you will find boodles of stuff there...and find out exactly what brand/dose/concentration of IVIG was administered...It may be errors in the art of pre-meds or how the stuff was stored....it's safe and strictly controlled up to the point of 'administration'...meaning into the folks it's there for! Go figger.

The doctor did not allow for any premediciation and only tylenol afterwards. This time there was still no premedication but he was allowed advil after. The medicine is shipped to my house and stored in our fridge. We were told to take it out two hours before infusion. Is this common? Also they told us to give Matt a hot shower before hand.

To Bonnie and Heather:

I just read your postings and hope your kids are doing better. I am an adult female who has been taking infusions for 2 months now. I take my infusions at home twice a week. I do them myself and have had no side effects. My doctor told me there are much fewer side effects when you do it weekly like I am. When they taught me how to do the infusions, there were many very young children also learning to do it at home themselves (obviously their parents do it for them.) Maybe your children could do this too. It's really not bad at all. Hope this helps!

Leslie

Hi. I have read your post and now I am VERY nrevous. My son is 5 and he should start IVIG in January. The side effects don't sound very pleasant. I wonder if it is worth it. Now, I am a super nervous mom!!! Does he have the infusion in the hospital or at home? Do they not give him any pre-meds?
Thanks!

Matt gets his infusion every three weeks at home. What has your son been diagnosed with? How often will he need the infusion and where will he be getting them?

Bonny

His dx right now is recurrent pneumonia times 22. He also has an immune def. but they cannot find it. He is doing a study at Texas Childrens Hosp. in Houston called "bacteriophage". That is to see how his immune responds and if IVIG would be beneficial or not. His pulmonolgist THINKS that IVIG will be beneficial. He has been sick since he was 4 months old (besides that fact tha he was born with Transpositon of the Great Vessels) and I have had enough and so has he. We need to find something to keep him well. He and I are both tired of him being sick. Just like you, even when he is well, I worry for the NEXT TIME.
Terri
Im sorry but I did not answer all of your questions. I don't know how often he wil need the infusions but I do know that it will be done at the hospital.