Hi!
Sorry you are going through so much. Don’t know if it is possible insurance wise, but could you look into home health? We love our nurse and it allows my 11 y/o to be more relaxed and comfortable, physically and mentally. From the sounds of your condition, I cannot even imagine the energy it would take to go down 14 stairs on your butt, that coupled with the obvious safetey risk to you and the facility, could your doc possibly write the insurance to explain the situation to push for home health(provided insurance is the issue) If no other options are available and outpatient is the only way, would you be open to a cath? It may be uncomfortable, but it might be safer and easier for you.
About the fluids, yes they are important, but honestly, sometimes my son fights me on the fluids, even since our headaches and ivig reactions have subsided. Some times I would say honestly he only is consuming 100 oz. a day. Not the best info I am telling you but honest. Fluids ARE the best way, but I am nervous about all those stairs on your butt.
Make sure the flo rate is slow for the first session, typically, the first session is over 3-5 days, most times they go with the 5 days. Each doc is different. If ypu are small in stature, perhaps you do not need much ivig and they are able to do it over 3 days. Also, my momadvice would be besides the fluids, take the premeds around the clock, even after you leave the facility. The full 24 hrs. We even go 3 days post. That is us, just us, probably the most important thing you can learn from this site is everyone is different, from levels of pain, amount of medicine, type of medicine, frequency etc. So what we need to do might not be what you need. We have had to be on the side of overkill with the pre meds because he would get the aseptic meningitis reaction every time. The good news is for the last two months, he has been spared the rection by about 60%. So…. it does get better, you will feel better and evnetually once you figure out what treatment plan works for you hopefully you can one day spend some time out of the wheel chair. We will pray for you and pm me if you would like to talk. Best wishes and good thoughts sent your way.
Dawn Kevies mom

Micheline,
I get IVIg every 3 weeks. I do drink alot of water & iced tea. I start benadryl 50mg. & Tylenol 500mg. every 6 hrs. 24 hrs. before tx. I con’t these meds for 3 days post infusion. I only get the IVIg one day every 3 wks. When I received 5 days of tx. I got very very very ill, all the meningitis symptoms. Ended up in hospital every time. When I get infusion they infuse it very slowly usually at least 6 hrs.
Hope all goes well for you & Good Luck.

i’m so sorry you’re feeling so bad. when i had my ivig, i had it every other day for five days per month. it’s now going on my seven year anniversary and i am on permanent disability and still have some bladder problems, fatigue, etc. i just wear, what i call my “big girl” pads. i know too much info., but it helps me when i just can’t get to the bathroom in time. it also helps when i sneeze (and pee), cough (and pee), laugh (and pee), etc. i know this is so hard for you, but in time, you will adjust with whatever you get back or not get back. you are in my prayers and please keep us posted on your recovery.

I just finished my IVIG a couple of hours ago and usually I feel better by the next day, or the day after. Drink as much as you can and take any pre meds that were ordered like Advil, etc. And just take it easy. It does go away:)

I ask, because some relaxants might not be compatable with some of the pre-meds. Usually, they consist of Tylenol, Benedryl, or combos of these, and at times some steroids to avoid ‘reactions’. Adding the relaxants into the mix could complicate things should that happen – tho it’s probably 98% unlikely. I suggest that you talk to your doc and explain your concerns, or do the same to the IV nurses [who should be very experienced in this sort of thing].

My only other prep suggestion is to hydrate like crazy! To the point where you can almost hear yourself sloshing and going to the ‘powder room’ every 20 minutes. It serves two purposes, the first: makes it easier to get a catheter into you as your veins are ‘popping’, and second: lessens any side effects you might have. I’d also suggest eating light for the day before starting infusions…I prefer fruits and light carbs myself. After my first day of infusing I usually crave proteins! Sometimes that first infusion can cause nausea as a side effect, so.. eating lite really avoids the issue.

Congratulations! Get it and then GET BETTER.

Good luck witrh this round of IViG. I reacted to it when I tried several years ago, and only responde to palsmapherisos. I do recall the Benadryl helping durin gthe IViG. 🙂

Hi Pam, he is in my prayers. I hope he gets the positive results from his IVIG that many of us have. Please keep us posted.

Jerimy

Hi Pam and Welcome,
Your brother is in my prayers as well as the family. I hope he finds his IVIG treatment is his “miracle juice”, as I do. Good luck!!

I find that IVIG works well for me it will take a little while to see improvement so do not expect to see effects right away. Do not give up. Keep the faith and remember that we are all here for you and your brother. Keeping the spirits high and enjoying life no matter how hard it is. That is some thing that helps keep me from feeling so bad. I read a inspirational story or quote every day and that has helped keep me healthier and happier than before. Take care and Good Luck!!!!

Pam and Joe,

I’m the mother of a 3 year old with cidp so I can only speak about the caregivers side.

I guess we love ivig, we have seen positive results but it seems, in Dell’s case, we need to take other drugs along with ivig.

I wish ya’ll the best of luck and please send another post about how he’s doing. Make sure they pre-medicate him.

Love, Lori

Hi Pam,

Tell Joe that I am keeping him in my prayers. Hopefully the IVIG will make a difference for him.