Finally getting treatment and a Help! request

[QUOTE=ConnorZmom]I was very worried about getting my five year old vaccinated also. I think it’s a personal decision and I totally understand your frustration. Connor did get all of his vaccines and he is fine. But again, you have to do what you feel is right.

One option about pre-meds for the ivig is prednisone. My first neuro would have me take 2 the morning of treatment. I believe that was 20mg. Be sure to drink lots of water.

Is there any way you can have a home health agency do your IVIg at home ? I never knew anything about it until I came here. I just had my first one at home and it was so much better. It may depend on your dr’s preference. Something to ask about, tho.

Good luck with everything.

Well wishes,
Stacey[/QUOTE]

Thank you for sharing your experience with vaccinating your son. I don’t want to completely rule out getting vaccines for my son. I just want more time to research and pray about things. Since school starts on the 20th, I’m really just trying to buy some time by talking to his school. I would hate for him not to be able to start school when his sisters do.

I have an appointment with my neurologist on the 22nd. I’ll ask him about premedicating with Prednisone. Even though I hate that stuff I’m willing to take it if it makes treatment easier.

I’m hoping to be able to get my IVIg treatments at home eventually. My first time getting it done is on September 2nd, though. I’m just happy it looks like I won’t have to be hospitalized for it.

[QUOTE=Emily’s_mom]Why do you have to wait so long to get your IVIG? That’s almost a month away!

As for the vaccines, you could possibly have your dr & your son’s pediatrician write a note stating that there are auto-immune issues within the family that could potentially be irritated by vaccines.

You can research which vaccines you want your son to have & do a delayed vaccine schedule so that way he doesn’t get many at one time. That’s what many parents are doing now anyways…in light of the autism connection & so many children being dx’d with auto-immune diseases.

I live in MI & parent’s have to sign a waiver at the school if they don’t want their child vaccinated. I think the laws are different in every state though.

Good luck.
Kelly[/QUOTE]

I had to wait five years for a diagnosis. Waiting another few weeks for treatment doesn’t seem so bad. 🙂 Also, the hospital orders the IVIg quarterly, I think. They only get enough to cover the needs of their current patients. I had to wait until after they placed their next order. I’m pretty certain the doctor having to pre-authorize my treatment through my insurance company probably figured into the time factor, too.

I know Texas provides a waiver for parents to sign if they don’t want to vaccinate their children. My children go to a small Christian private school. I really pray they are understanding about my concerns. A lot of the teachers and staff there already know I’ve been having neurological problems from talking with my husband and children.

[QUOTE=LindaH]That is what I am hoping for. An outpatient plan instead of inpatient. It would be much cheaper medical bill wise too. I guess the out patient has a schedule they go by and have to fit you in by their schedule. Hope I get lucky and have this done also. Good luck![/QUOTE]

Thanks! I hope you’re able to get it done, too. I think home care costs are even cheaper, but I’m not sure.

[QUOTE=ConnorZmom]One quick thing about the prednisone pre med. I was on the steroids as a treatment…90mg every other day. Nine pills ! Oh, I was a mess. All of that for nothing b/c they didnt work for me either….BUT…I just wanted to add that after I got off the steroids, he gave me 20 mg prednisone before treatments…and that’s it. So, with that low dose and so infrequent, there were no ‘roid side effects. I guess he wanted me to take them b/c of the anti-inflammatory agent in them ? Not sure.

Since you will probably be in an infusion center at the outpatient hospital, take some books to read or gossip magazines or something. You will probably be there a few hours at least. I didnt sleep my first time, even with benedryl…but after that first session, i felt more relaxed and dozed off a bit. Maybe you will meet a new friend…I always met interesting folks. Some have to come there weekly or even daily for infusions.
Glad you are getting treatment and I truly hope you’ll feel much better soon.
good luck !
Stacey[/QUOTE]

My system reacts wonkily to medications. Even non-drowsy medications tend to knock me out. It makes sense that I might be put on Prednisone since steroids are about the only anti-inflammatories I can take. Hopefully it’s a low dose and it doesn’t bother me.

I’m going to check to see if I can bring my laptop with me when I get the IVIg treatment done. It would allow me to catch up on my writing.

I figured I’d post a quick update on the vaccination issue 🙂

I sent an e-mail to Sammy’s school, completely explaining CIDP and my worries over Sammy getting vaccinations because of the likelihood of developing GBS. I received an e-mail back from them in which they thanked me for being so open and willing to share about my health problems. They are looking into forms for waiving vaccines due to medical concerns. My children go to a small Christian private school so it’s quite possible I’m the first person that has ever had this request. At least they understand my worries and seem to be willing to work with me on it.

After some discussion last night, my husband and I decided to not vaccinate Sammy at all. He was sick quite often as an infant, requiring hospitalization at four weeks old for meningitis. He also had so many ear infections there was debate about putting tubes in his ears. My husband and I discussed the likelihood of Sammy catching any of the illnesses they vaccinate against vs the likelihood of Sammy having a potentially serious side effect. We figure the odds of him getting a side effect were greater than the odds of him getting the illnesses. When Sammy is old enough to decide for himself, we’ll let him figure out if he wants the vaccinations or not.