Having IVIG on Monday....Nervous....

[Dedee]

Our last appeal, through the national appeals committee, was denied. Our letter was from a pediatrician of all things who said there was no evidence of any acute medical disorder in our child. I can't take any more waiting so we have decided to go forward with IVIG through our doctor who does it in her office. She has done lots of IVIG, some for PANDAS, some for autism and others for other autoimmune disorders. She is very comfortable with the procedure. It will be completely out of pocket but we are still looking at another appeal since sher may have to have this again in the future. I just can't put my daughter or our family through any more waiting. We are going to do the HD IVIG at 2g/kg over two days. My daughter isn't very compliant so I am a little worried about getting her to drink and do the other things she is supposed to do. The doctor said she will do hydration, benadryl, solu-medrol and some anti-oxidants prior to the infusion and then more hydration after. I just hope my daughter will do her part on the drinking and so forth. So please just pray for us on Monday and Tuesday. I am very nervous.....

 

Dedee

[mkur]

Does your child like watermelon or melons? It's mostly liquid. They can nibble on it. I buy my son canned drinks at the drugstore - his choice - a special treat. I also let him have special shakes (homemade and fastfood) as a treat - things I normally will not pay for.

 

Dr B give's them steroids (2 days before, 2 days during and 2 days after), ibuprofen (during and after) and benadryl (during and after). It really helps. My son refused to take it once and got a major headache.

 

We were at the point where having the ivig was a relief. We needed to do something and this has help a lot. It offers hope.

[dcmom]

Dedee-

 

Maybe this is what your doc is planning-

 

but all of those things can be given through the iv (hydration, benadryl, solumedrol, etc). Hydration through IV will be faster and higher qty- there would likely be no need to drink more than normal.

 

If she isn't planning this- I would ask- tell her you are afraid of compliance....

 

Wishing you an easy day...

[SSS]

Sending you good thoughts as well-- I was feeling the exact same way before our first IVIG-

I gave my dd6 the Honest Kids juice boxes to drink before and after (she normally doesn't get these)

It will be just fine----

Do they have a DVD player there? I found watching DVD's our saving grace- she wasn't up to hand held games or drawing while undergoing the procedure- I sat right next to her and we zoned out on Sponge Bob.

The hardest part was getting the IV in that first day- but it really wasn't even that bad, but yes I had to hold her arms and legs- and we were lucky, she agreed to keep it in over night - because she didn't want to have it put in the next day- we put a medical white sleeve over it and called it her 'cast' (she always wanted a cast)

Anyway- it will be okay---hang in there.

[lmkmip67]

I can tell you I was so nervous and scared at first. Wasn't sure what I was doing to my son, etc. It was no big deal at all. We are heading into our second IVIG this coming week. We did it with Dr. B so steroids 2 days before, during and after. Motrin and Benadryl during and after. My son wasn't bad with the needle at all. He even wanted it out so he could swim at the pool. lol He swam for 4 hours and collapsed in bed that night. He had it put in again the next day. He had a slight headache the day after. but ever so slight. He ended up going to school, playing all his weekend sports and everything. He didn't have one second of down time. I was prepared to stay in the weekend, etc. Even thought I would get a lot done, but no. lol Now I know we have to do another one, so I am even looking forward to the time to just sit and not have to do anything since we have been so busy lately. Not that I want him to have this, but he has to. So we might as well see the positive. Good luck! It really will be ok!!

[michiganpandas]

I can tell you I was so nervous and scared at first. Wasn't sure what I was doing to my son, etc. It was no big deal at all. We are heading into our second IVIG this coming week. We did it with Dr. B so steroids 2 days before, during and after. Motrin and Benadryl during and after. My son wasn't bad with the needle at all. He even wanted it out so he could swim at the pool. lol He swam for 4 hours and collapsed in bed that night. He had it put in again the next day. He had a slight headache the day after. but ever so slight. He ended up going to school, playing all his weekend sports and everything. He didn't have one second of down time. I was prepared to stay in the weekend, etc. Even thought I would get a lot done, but no. lol Now I know we have to do another one, so I am even looking forward to the time to just sit and not have to do anything since we have been so busy lately. Not that I want him to have this, but he has to. So we might as well see the positive. Good luck! It really will be ok!!