My 15 month old on gammanorm advice on side effects

[kittymum]

Hi everyone

I was hoping to find other parents or anyone who is on gamma norm sub cat. My son who is 15 months old has been having gamma norm every two weeks for 3 months now. He has been having fevers up to 38.5 and very unsettled sleep and generally fatigued and upset.

Dr said give paracetamol which brings fever down for a while but shoots back up again this lasts for 10 days after infusion then we have 4 days that are ok and then back to infusion day.

Has anyone experienced this with their baby or the gamma norm product?

Thanks so much!

[twini]

Hello,
My son is also 15 months old and he has been having Gammanorm. He tolerates it well.
I haven 't experienced any side effect yet.

[s162216]

Hi kittymum,

Welcome to the forum! I presume that you've spoken with your son's consultant immunologist about this? It's not normal for side effects like that to happen with any IgG product, so it might be worth discussing with them about a product change, as there are no real rules regarding how anyone will do on an individual product, and some people have to try a couple before they settle on a product that "suits" their own body.

Another factor might be, is your son currently ill or suffering from an infection? Reactions are much more common if infusing with an infection so that might be something else that you may want to get checked out.

Can I just ask out of interest, for what condition is your son receiving the IgG? I presume it's SCID as it's usually not possible to diagnose most PID's properly in children under 3 (as the immune system is still developing).

I hope that your son improves,

Sam.

[kittymum]

Hi Sam,

Thanks for replying. My son has not been properly diagnosed yet but the immunologist seems to think it's some form of primary immunodeficiency. His t and B cells are fine he has low igg iga and
Igm. He has no serious infections. The only reason they investigated is because he had a bcg abscess under his arm.

He previously also had side effects for hizentra along with vomiting and diarrhoea which is why he was switched to gamma norm. He has only had 2 doses of gamma norm. Before therapy started my son never had fevers so it's quite strange for us.

He presently has no infection dr reviewed him before and after however we are now seeing gastronolgist as he has mucus in his stool.

Twini- thanks for replying. I'm glad your son is doing well with the gamma norm. How long has your son been on gamma norm is there any special way you administer we currently do 10ml in 1 hr.

Thanks for all your support

[twini]

He has got Gammanorm since July. He gets it 10 ml in one hour, biweekly. We do 'normal' way: I put two needles in his thigh.
Is your son better?

[kittymum]

Hi twini,

My son got better and diarehea cleared up however we infused this morning and now he has a fever of 37.9 , vomited and diarrhoea

We were told to give Piriton and paracetamol every six hours which didn't make a difference

I feel like he was better and happier before infusions