Nightmare happening!!! Please help!!!!
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November 22, 2010 at 9:02 pm
Hi everyone,
It’s been a very long time!!!!!! Since ,the beginning of the year, I have had about 5 or 6 IVIG inpatiant treatments. Every single time I have a treatment, I am admitted into the hospital for 5-6 days!!!!! During my last treatment, my kids were put in a dangerous situation with our former live-in nanny. She was a person we trusted, had been with us for a while, and came highly recommended. I witnessed her mental unraveling. It was scary! I absolutely believe she is bipolar. The longer I was sick and at home, bedridden, the more I saw it. I was under such stress with her here that my hair started falling out in chunks! I relapsed really badly and had to be admitted for 6 days, leaving my kids with her. Thank God they were in school most of the day and my husband was home at nights. During my last treatment, something happened between my kids and her. Someting very ugly. I told my dr that I was no longer going to be able to be admitted into the hospital because I would not leave my kids (5 and 2 years old) alone with anyone. He said that he was going to recommend monthly, maintenance treatments at home. I was so elated that he understood my point of view and that he was going to help me out! Since that visit, 2 months ago, I have severly relapsed to the point that I slept for 4 days straight without food or water. My mother came over for a visit out of fear because I had not answered my phone in days. The moment she saw me, she called an ambulance which rushed me to the hospital for severe dehydration. Since it was not the hospital that my doctor has privelages in, they released me after spending some time getting hydrated. They said that they could not perform an IVIG treatment there because it needs to be ordered by my neurologist. He is 1 hour drive away from me. I called and asked him for the status of my paperwork of my Rankin Score and he sighed and said “ughhh…. it’s so much paperwork”. Needless to say, he is now saying that my treatments should be administered inpatiant. WTF!!!!!! I tried a new neurologist close to home. He said that he agrees that my treatments should be at home, but would not take my case on because it was too complicated………….. Any recommendations?????????????????????? I am si F’ing trapped in this body without treatments!!!! Is there a place online where I can print a Rankin Score sheet where all he would have to do is circle a number 4 and sign it???? Please Help!!!!!!!! -
November 23, 2010 at 1:02 am
I don’t even know what to say, this is truly a nightmare. I was inpatient at Mayo in Rochester, MN for 4 months. Luckily for me, my two older children were done with college & on their own. My youngest was away at UMD, so I didn’t have that worry. I can’t imagaine if I had gotten sick when they were younger. When I was released from the hospital, Mayo had already set up weekly IVIG infusions (I was a very bad case) in my home with a home health care agency here in the boondies in northern MN. I see you live in Miami & the neuros are saying it is too much paperwork? Having the infusions at home is so easy & uncomplicated, can you demand your neuro set this up for you? I swear they are the most arrogant doctors out there (except for mine.) I wish I could do more for you, but I am just stunned by all of this.
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November 23, 2010 at 9:01 am
hey there
So sorry for your ordeal, I hope it gets better…I don’t know what a Rankin score is:confused:
if only there were family members who could help out with the kids, I know that when my boys are wound-up in the house, my GBS winds up as well, trips to grandma’s or auntie’s house are good for them, good for me as long as it’s not too long….
you sound so stressed-out for obvious reasons, I hope you can find a way to calm down, good luck getting your doctor issues in order
sending you warm wishes from the chilly north
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November 23, 2010 at 2:20 pm
I don’t have any answers for you, but so totally sympathize with your situation. I’m saying a prayer for you ******************{hugs}}}}}}}}}}}
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November 23, 2010 at 10:34 pm
Hi – sorry about your problems. Here is a link to a pdf file fdor the Rankin profile –
[url]http://ctsdmc.public-health.uiowa.edu/Ihast2/PDFS/updatevol2iss1attach.pdf[/url]And here is a form online. Good luck.
[url]http://stroke.ucla.edu/workfiles/rankin-focused-assessment.pdf[/url] -
November 24, 2010 at 1:06 am
I have my infusions at home and thought the change from clinic to home was very easy. Paper work?? The neuro just hands something to his office staff and they do the calling/ordering for home health nursing.
Do you have such severe reactions you need them in-hospital??
Are the hospital staff knowledgeable on how to administer IVIG?? It can’t be given too quickly and you must be pre-medicated before hand.
Sorry–do print out the Rankin form and get the neuro to sign it. I myself had to bring a typed statement I wrote to my neuro’s office and Said–Sign this. He did. I was tired of the run-a-round and his staff unknown to him was not following his instructions.
When you do get IVIG done at home please read the Forum posts on how it should be carefully done/monitored. This will help you have a safer infusion and keep a journal on who comes and how much time goes by between each pump rate increase. -
November 24, 2010 at 4:18 pm
I have a few questions.
1) Why are you admitted for 5-6 days at a time?
2) How much IVIG are you getting? What brand? And what is the max flow rate?
3) How often are you getting IVIG?
4) Did you receive a treatment at home since you last saw the dr 2 months ago?
Kelly
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November 28, 2010 at 5:50 am
My insurance is MVP and get four days of home infusion every 4 weeks. They have already approved it for 12 months
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November 28, 2010 at 4:57 pm
Hi Kelly,
I just finished writing you a 5 paragraph answer, pouring my heart out to you and of course the fking thing erases!!!! 🙁 SoI am sitting here crying because I don’t want to go through all those emotions again. I am going to make this answer very black and white becasue I am just depleted and defeated……….
I go in through the ER every 2 months or so because my legs give out on me. I am given 35 grams of gammagaurd IVIG for 5 days. The infusion time usually takes anywhere from 8-12 hours. The reason I am in for 6 days is because since I go in through the ER, I lose a day with the ER staff finding me a room and getting the doctors orders in the system. He knows when I am coming in because we coordinate it so that he is the doctor that is on call. I have not received a treatment since my last one nor since i was release from Baptist Hospiutal with orders to go straight to him for therapy because I cannot afford to leave my family again for 6 days:-( I just cant…….=
[QUOTE=Emily’s_mom]I have a few questions.1) Why are you admitted for 5-6 days at a time?
2) How much IVIG are you getting? What brand? And what is the max flow rate?
3) How often are you getting IVIG?
4) Did you receive a treatment at home since you last saw the dr 2 months ago?
Kelly[/QUOTE]
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November 28, 2010 at 7:36 pm
Why can’t you have infusion at a nearby clinic and then go home afterward??
I did. Some at the clinic were there 10 hours.Wondering why stay in hospital each time as there are other options for treatment. Forum members usually have regular scheduled IVIG to help forgo getting too sick. Does your doctor not understand this is the best way to handle GBS/CIDP symptoms?
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November 29, 2010 at 7:59 pm
Guskno – It can be extremely frustrating sometimes here when you lose your post. It has happened to me too, so I know how you feel.
My daughter, 4 years old at the time, used to get admitted through the ER to get her IVIG. That was before we did home care & it was only 3 times. From what I’m told, hospitals do NOT like to do this. It’s a big pain for them.
Here are some suggestions:
1) It does not sound like you are getting IVIG often enough. IVIG has a full life of about 40 or so days. So if you are waiting 2 months in between treatments you are going WAY too long. You need to AT LEAST have treatment every 4 weeks with a 5 day loading dose first.
2) There is absolutely NO reason that you should have to be admitted to the hospital for IVIG. Call around to home care companies in your area & ask if they do IVIG infusions at home. Get the companies info & then go in to see your neuro. Explain to him getting IVIG at home or in an infusion center is the standard. (I cannot for the life of me understand why a dr would think it’s perfectly acceptable to be in the hospital for 6 days every 2 months, especially when a person has children)
3) Print out info on CIDP. Explain to your dr that waiting for a relapse to happen before treatment is just going to make the problem worse. Your body will continually be damaged & never be able to repair. If you get on a regular maintenance schedule your body will have time to repair & you will be able to keep away any relapses.
4) Call the CIDP Foundation & ask if they know of a dr in your area that treats CIDP.
Again, I’m very sorry you are going through this.
Kelly
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