methods of IVIG administration

Hello Kim

I have not tried that method of infusion…however, I’m not so sure that I
would want to try it. The reason, I have a port, just below my collarbone
and it shows just a little bump. This was my second one, the first came
apart on my left side after about 5 years of use. It was necessary to have
one put in because my veins were collapsing after repeated use over years.

I am so happy with it…it frees my arms for use, it’s easier to use the rest-
room, I go about my day because I use a portable pump…I go outside and
get my mail, eat, etc.

It seems like having it in the stomach would be hard…using the restroom
from the infusion…I go twice an hour.

However, if your son wants to do it, can do it…then see about having it
done.

His size or weight should not have any bearing on a chest port.

Either way…good luck to you and your son…life is so much better without
an infusion in your arms…lol…that’s so much better.

Miami Girl

Hi Kim,

It sounds like you are describing subcutaneous ivig. It is a differently formulated Ig – in addition to the comforts of being to administer it yourself at home (after training), the amount of infused liquid is much less. I had posted a link to a ppt presentation on it about 6 months or so ago on this forum. Try the search function – I’ll post the link if I can find it again.

Several of the members here have inquired about it for themselves, including me (for my daughter), but as far as I know, it is only being used by those with primary immune deficiency. Good luck with your inquiries – and let us know how it goes. I’m sure many here would be interested.

cd

[QUOTE=Kim.72]

Anyway, it’s something to check into.[/QUOTE]

Absolutely!!

Here’s the link to the presentation:

[url]http://www.clinimmsoc.org/teaching/slides/subcutaneous_ivig/index.php[/url]

In addition, I found this in my notes:

Ask for John Davis, the president of WestCare Infusion Services and he’ll give you info about this. They’re a small company but ship all over the country. Their pharmacist, Tommy, is a font of information also. Phone 1-800-392-2617 http://www.westcareinfusion.com|[url]www.westcareinfusion.com[/url]

hope this helps.

cd

Is Adam pre medicated with tylenol and benadryl before his ivig? If not he should be to see if it will help with his post infusion problems. If he is and he is having those sideeffects-have him checked for aseptic menigitis-from the ivig. the place of infusion is not going to change his reactions, no matter where or how he is infused. Try having the ivig infused at a slower rate, then ramp up slowly. the fast infusion rate will cause bad effects also. Usually ivig ports or picc lines are used for gbs/cidp patients. A stomach port is invasive. Make sure he has plenty of fluids everyday and increase it during the infusion. Good Luck, Take care.

Kim

I have had my second port now, for about 5 years, it really doesn’t show
unless you are looking for it.

Yes, I agree, your son shouldn’t be feeling so sick and throwing up like that.
Maybe, try another neurologist. I could understand a headache or such, but
there might be something going on.

Good luck to your son Adam…

Miami Girl

Kim, Believe me I understand your frustration. Has Adam tried PP instead of ivig? If he has had aseptic menigitis everytime he has ivig-why continue it? I was told not to get ivig again-because of aseptic menigitis, it could get worse and let me tell you those effects are not fun at all! I was in the hospital when i got my ivig, the first night was fine, the second night went ok until the last 30 mins, then all hel! broke loose with me. the worse headache i’ve ever had, vomitting, fever, total pain all over, and nothing worked for 4 days. I was only supposed to get the 2 nights, 12 hours each of ivig then go from there. my lp showed a protein level of over 400, and i was just miserable. Consequently i can’t have any ivig now, and drs around here are afraid to try pp on me-they don’t want me to have any problems with it. If the dr won’t try pp, then find a dr who will, or use one of the other treatments. Don’t continue to put Adam through those horrible sideeffects any longer, it really is miserable and very depressing for him. Take care. by the way the most evasive part of pp are the needles. something to think about.

I too get the aspetic meningitis with the IVIg, along with the benadryl and tylenol, I take 4 mg of Dexamethasone before each infusion and for a couple of days after. The IVIg works for me where other treatments wouldn’t, so a little steriods every 5 weeks seems like the lesser of the evils. I think dealing with the CIDP basically has turned me into a lab rat, always something new to try, a new symptom to deal with. I go along hoping to see some improvement, or an easier way to deal with the disease. Once in a while we hit on something that works and it makes it worth the trail and error process.

Hi Kim,

This is my first “reply to” so bear with me! I am a new member. My son, 17 was diagnosed with CIDP almost two years ago. Two visits ago, our pediatric Neurologist told us about experiemental Subcutaneous injections over a period of a week. Alot of teens are becomming involved. Normally, my son gets one large dose, once a month for approx. 8-10 hours. With the sub-cue, he would give it to himself over a period of 4 weeks. (I believe it was once a week for 1-2 hours at a time) He could do it at home and would be free of the infusions that take so long. Although the neurologist said there are no definitives, it did make it easier for the kids, and also, he said in some cases, it would help to eliminate the “crash” toward the end of the month when he is due to have his infusions.

Sounds good, BUT, my son couldn’t imagine giving himself injections, 😮 so he opted for the day long infusion.

Best Regards

I’m with your son on self injections. I still can’t watch them take blood or put in the IV for my infusions. Can’t even watch it on TV. I suppose if it came down to having to I’d find a way to adjust.

Kim,
I am so sorry Adam is still having difficulty! I also have read info on subcutaneous injections. Maybe they could be a source of relief for Adam. Good luck and I am glad others are responding to you with info. Compact Disc is very knowlegeable she is very helpful as well when you ask her questions. I think her daughter is around Adams age, maybe they could e-mail each other and Adam could ask her questions? Good luck to you guys!

Dawn Kevies mom 😮

Kim

Subcutaneous ig has not been approved by the FDA for CIDP as yet. Only for PID. Ohio State University is to do a study to see if this form of administration is as effective as IVIG. Supposedly after training, you could give yourself the shot, just as a diabetic gives himself his insulin injection.

Ron