Ivig?

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sandy flores m

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Hello my almost 5 year old son is about too start 3 days of Ivig infusions tonight ,he has refractory epilepsy ,everynight he has tonic clonic SZ.


His team at CHLA is starting him on IVIG ,and if we see no results the new model VNS ,Is our only other option .

Has anyone had results good or bad with IVIG?

Regards
Sandy
 
Hi sandy, welcome to CWE!

IVIg is still a relatively new therapeutic approach. As far as I know, no-one has mentioned trying it here at CWE but you never know. I hope someone will weigh in.

IVIg seems to have the best results in those whose EEGs show seizure activity in one hemisphere along with activity in the frontal area of the other hemisphere. When it does work it tends to do so quickly and surprisingly well. Fingers-crossed that that is the case for your son. Please keep us posted.

best,
Nakamova
 
Nakamova thanks for the reply,

Yes I cant seem too find much information online about IVIG for Seizures , my son does have frontal lobe focal e.

Fingers are crossed ,we will update we start tonight ,IV is in .

Regards
Sandy
 
Hi,

I've been having IVIG for about 2 years now. I'm 20 and I've had temporal lobe epilepsy (non-convulsive) still I was 8 and was still having seizures very regularly, often several a day, despite being on several medications.
I have IVIG every 2 months over 3 days and although it hasn't got rid of all of my seizures it has decreased them by about a third which has made a big difference on my day to day life. Sometimes it has side effects the day after of making me feel a tired or having a headache, but nothing too bad or permanent.

I hope it goes well for your son
 
Hello thanks for the reply

We Started Ivig about a month ago, my son had 2 infusions over 2 days at the hospital , we were released and we could tell he felt yucky for a couple of days after .

My son seizures are always illness related , and he always seems too be ill, allergies ,sore throath ,viral infections , you name it he always has something ,so he has tonic clonic Seizures everynight .

We noticed that when he is ill and is given ,antibiotics,antiviral,allergy meds. His seizures always improve ,it seems that the antinflamatory effects of medications reduce his seizures .

We are hoping that because of this that IVIG helps him , we go back next week for his second round of IVIG.

Good Luck to you as well.
Merry Xmas too all

Sorry for the spelling im on my phone and do not have my glasses
 
Chal....is that Chalfont st Mary's or elsewhere..If Chalfont they really know what they doing It world renowned in treatment of e
 
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