Thanks Diana:

I've been going off on Alan all day long and he finally came over to me and said "I know you are having a hard time but please don't take it out on me" and we hugged.

We just had a long talk about Frank and he told me I have to "let go and Let God". I just needed to vent and we spent about an hour just talking. I talked, he listened. There can be no answers where my son is concerned, and that's why sometimes a mom wants to bang her head against the wall but what does that accomplish??? Nothing actually.

So we talked and I'm quietly coming down back to reality. It's like a death in the family but there is no closure. That's the big difference with a situation that we deal with on a daily basis.


And I do appreciate your hug. Thanks so much for your kindness.

Love, Melody

Computer number 5 seems to be working! Reading this thread - its true there are pros and cons of IVIG - and if you get improvement from it -definatey worth it... but as Dahlek says - its an invasive procedure - every infusion is really a transfusuion of anit-bodies from thousands of people - so lots to consider.....

My insurance would not pay for the first 5 rounds as an inpatient (minimum 4 1/2 hours each - so I had to go to the hospital every other day), then was getting them weekly at home last year, miniumum 4 1/2 hours each - the rate may have to be slowed even more if side effects kick up during it.... there is an initial risk every time the infusion is started of shock - although rare - so the infusion is started slowly and increased usually every 15 minutes for the first hour.... the doctor will write orders for the rate... and almost always patients are premedicated wth benadryl and a pain killer.... again, while everyone differs, tiredness, dizziness, nausea, are common side affects and can last a couple of days -I much prefer them at home cause I go straight to bed afterward.

Some people feel immediate improvement - others subtle (I'm in the subtle group - even at a high dose) but the docs still arent sure of cause of my PN (which started as severe sensory and autonomic)... it has helped increase my energy level but has not helped the autonomic symtoms at all - (which the doc told me it typically doesnt unless it to treat inital severe onset GBS).... my treatments are on hold right now - I'm waiting for the amyloid specialist I saw to confer with my GP and order all the biopsies he wants done and thats my number one prority - but when thats done and if the amyloid is not found then I'm going to talk to my doc about a different brand of IVIG (each one may have a completely different effect on the patient) so that maybe getting thru them will be easier.....

The sites that Dahlek mentioned are very informative -please check up on them! If it works - its wonderful! Here's good thoughts that it will....

Hi Melody,

I just thought I'd throw my hat in too.

I've had CIDP for Many years and receive IVIG every month as a stabiliser.

I've been on IVIG for too many years to remember now and have only had very slight reactions, a couple of times. Definately nothing to write home about.I've not had any trouble with infusion rates or anything.
If your infuser (for want of a better word) is trained, patient and can read a protocol, then Alan should have a good start.

Just like all drugs etc. there are pros and cons and you and Alan have to make this decision yourselves.

I'm sure that all of the information that you're getting here will help you immensely.

All the best
Keep us informed


Noong

Dear Melody:

It is a terrible grief for parents when there is an estrangement from their child or children.

At one point my daughter did not communicate with me for about 15 months. This was years and years ago.

But it was not like the situation with your son. She was merely going through some bad times of her own and before too long was over them and now we are once again mother and daughter.

I have read articles about your son's malady and know there is no comparison. But I want you to know that I empathize with you. There was many a time when my husband drove me around in our car, with me sobbing.

Hugs to you dear Melody.

Shirley H.

Thanks to all of you for the information on the IVIG. I will be surprised to hear if Alan will actually go through with it after he reads ALL THE POSTS ON IT. I mean, I read them and I said "not me", I wouldn't sit there and get all that stuff from 20,000 people." But again, I don't have going on in my body what all of you have.

Alan only has the pain in the toes in both feet. It's much better than 5 years ago, but it is worth going through IVIG. Since it is his pain, only HE can decide. If it were me, I'd rub myself with Blue stuff and tiger balm but then again, I don't have going on in my toes what he has going on in his toes so only he knows if it's worth going through what I read you all went through.


Now this is for Shirley:

Thanks for understanding what I am going through (and have been going through for 5 years), and will continue to go through until I can stop being a mother (which, really!!!! can a person do that??)).
So thanks for the hugs and warm wishes.

Very much needed.

Melody

It's more tightly controlled than opiates! Web up the FDA.gov and look for 'blood products'. The controls and standards on this stuff, how it's prepared, distributed and administered are very concise and strict. IF you get it administerred thru a top-notch facility or service, well it's better watched than gold!

The people who donate are more than thoroughly screened and checked out and the way the stuff is processed [what I can get about it that is...some aspects are trade secrets] is pretty darned safe...safer I believe than simple blood transfusions.

It IS expensive stuff...but it's precious SPECIAL stuff for a huge number of people for whom it works. Also, in the hospital I have met the neatest people who also get IVIG...and other stuff!

Here's hoping for the best for both you and Alan - j

Thank you my dear Dahlek:

The nicest people are on these boards. That's all I can say!!!!

Want to have a laugh? I'm sitting in front of my computer at 12:noon just trying to learn Mrs. Doubtfire's mailwash thing and my phone rings and it's my sister-inlaw and she goes "have the kids called you yet"? and I said "what kids"?? And she goes Janine and Brian (these are her daughter 36 and husband 37, she still calls them THE KIDS!!!.

I said "why are your kids calling me" and she says: "they are coming over to your house, they are at the Brooklyn Aquarium with the little ones and they want to come and see you". I said" "no, no one's called me but I have to hang up and put on some clothes".

You never saw someone clean a house, change from pajamas, clean the bathroom so fast in your life. As I'm polishing up the mirror the phone rings and I go with a big HELLO, (thinking it's the KIDS) and it's my sister in law saying "don't bother, they're not coming, the kids are cranky, they want to go home" I said "And I just cleaned my whole house (you know when you have company, it's called COMPANY CLEANING!!!!).

I started to laugh. So I changed back to comfortable pj's and now my house is sparkling. Alan wasn't even home, he went to some trade show in NYC.

So now I'm back trying to learn this mail wash thing. It's supposed to get rid of spam in my e-mail AND BELIEVE ME, I GET SPAM IN MY EMAIL.

regards,

Melody

Dear Melody:

No matter how old our "kids" get, we never stop being Mothers.

Shirley H.

I am really sorry to hear about your son. I am the parent of an only child too, and my child means the world to me. He is the reason I get out of bed in the morning and the reason I fight against my PN. He is growing up way too fast, and getting more and more independant. I have to keep on reminding myself that he is not mine as a possession,but it is my job to give him roots and then wings I guess.

But a mother is a mother no matter how old her children be.

When I think of my child growing up so fast, I think of this poem I read,
by Robert Frost.

Natures first green is gold
Her hardest hue to hold
Her early leaf a flower
But only so an hour

Then leaf subsides to leaf
So Eden sank to grief
So dawn goes down to day
Nothing gold can stay-


I hope this get's easier for you Mel,and remember always, you did the best job you could.

Melody...it was Chemar who suggested the mailwasher, not I.

I don't use OutLook at all. I use Yahoo only. All weird mail in Yahoo goes to the spam folder... they filter it for you. I really like Yahoo for that reason.

Perhaps a PM to Chemar would give you the solutions to your frustrations?