AnonymousMay 25, 2006 at 12:12 am
I posted about a week or so ago that my 4 year old daughter has CIDP. I tried to come back & reply to my responses but it wouldn’t work. I kept typing up my response then when I hit “preview post” it would take me back to where I had to sign in. I’m hoping that it works this time.
I need help! Emily’s right eye would not move right. After her relapse & about 7 IVIG treatments it got better. It was near perfect. But late last week we noticed that it was “messing up” again. She can no longer move it to the right.
She tested positive for H Pylori on a blood test but negative on a stool sample test. Her “fed rate” (sp?) is high at 82 – normal is about 20.
What do we need to do? This is all coinciding with the lowering of the IVIG treatments to once a week. (it was every other day, then twice a week and now once a week. This is her last week of once a week treatments then we are going down to once every 2 weeks)
Do I ask that she get more IVIG or steriods? Are there any anti-inflammatory medications to give her?
The gastro dr wants to run all kinds of tests because he thinks that the “fed rate” is high because she has colitis or Croehn’s Disease. I don’t believe that she has either of them.
I just need advice on this. I don’t know what to do.
Also I need someone to tell me what to expect with this disease. Is Emily going to end up in a wheelchair or can it really go into remission? I was feeling that we could get it into remission but I’m just not as optimistic anymore. I just don’t want my baby to live her life in pain. I want her to be as normal as possible.
Thanks in advance,
AnonymousMay 25, 2006 at 2:21 pm
MAybe more IVIG treatments are needed for Emily. Lots of peoples eyes have been affected by GBS/CIDP. It might be possible that she has the Miller Fisher Syndrome of GBS that affects the eyes too.
The word you are looking for is [B][B]SED Rate[/B][/B]Ask the Drs about her taking Neurontin for the pain, steroids do not work for GBS, they work for CIDP.
Is Emily walking at all, getting physical and occupational therapies?
I don’t think she’ll wind up in a wheelchair, that’s usually the very severe cases. You have to try and be optimistic for Emily’s sake.
Please know that I will keep Emily in my prayers.
AnonymousMay 25, 2006 at 3:26 pm
Emily was originally dx’d with GBS Miller Fisher. But she had all the classic CIDP symptoms. It progressed over a period of months before it got bad and we knew we had to get treatment. Before that we thought she might be having growing pains. When she relapsed in April her dx was changed to CIDP.
Emily is walking, running, jumping, and rides her bike like a normal 4 year old. She doesn’t need physical therapy of any kind.
It’s just really hard to stay optimistic. I feel like her neurologist doesn’t have a game plan & he doesn’t answer my questions. He didn’t even have any kind of plan when he saw that her eye is getting bad again. He just said to keep an eye on it & come back in a week. I feel like I know more than he does about CIDP. Also, I’ve been doing so much research & keep reading the really bad stories. And of course those are the ones that you come across more often.
I have an appt with Emi’s pediatrician on Tuesday to get a referral for a neurologist at the University of Michigan or Children’s Hospital. I feel like I need to go find a dr with more experience. I can’t keep carrying on the way that I have been with trying to find answers. I need a dr that will do it with me.
Thanks for replying. It helps so much to be able to talk to other people that are going through this.
AnonymousMay 25, 2006 at 5:40 pm
I think you made the right choice of taking Emily to the University of Michigan or Childrens Hospital. There are a few people here that went to
University of Michigan and like the Neuros there very much.
Glad to hear that Emily is so active, that’s great.
Wishing the best for Emily. 🙂 🙂 🙂
AnonymousMay 28, 2006 at 10:23 pm
You made the very best decision of all to get her to a teaching hospital. You get the benefit of several doctors there . The local neuros have limited opportunities to see this somewhat rare disease, therefore they are making stabs in the dark. I was sure that my Neuro would go home an read his book each time he saw me. It took a teaching hospital to get to the bottom of the situation. ( In my case, I am K C’s Mom, the one with the problem, K C was the one who found a wealth of info on this forum for me I will be forever grateful to everyone here for their input) I will be praying for Emily and you. Hope you get your appt. soon.
May 30, 2006 at 12:41 am
Never should a child have to sit for IV treatments…i hate it enough and I’m old enough to deal with it. I’m thrilled to hear she is running around and getting a normal childhood (hopefully without too many bumps and bruises!) And I am glad that you have a children’s hospital nearby. One thing I have learned abuot the medical field, if you are unhappy with your docs decisions, there are so many others to choose from. I hope you find your answers and more importantly a doc who has a plan for the whole family.
You are in my prayers and I hope Emily has a fantastic summer! Stay cool as this heatwave in the midwest is unbelievable.
AnonymousMay 30, 2006 at 11:44 am
We saw the pediatrician today & he is going to try to find a neurologist for us that has experience with CIDP. I told him I don’t care if it’s at the Children’s hospital or at U of M hospital as long as I can get Emi in to see someone who knows how to treat CIDP.
How old is KC?
This site IS unbelievable. I was so happy when I found it back in January. It helps so much to just be able to talk to other people who have the same disease as Emily does, as I have no idea what it feels like.
Thanks for the prayers. They are needed & very much appreciated!
AnonymousMay 30, 2006 at 11:51 am
This heat wave is something else. I let Emily run in the sprinkler yesterday. I’m sure that the home care nurse would’ve had a heart attack but I don’t care. Emi is on 2 different anti biotics for H Pylori – so I know that there is NO way that her Broviac is going to get infected. And besides that, Emi needs to be a normal little kid & running through the sprinkler is about as normal it gets when you are dealing with 90 degree weather. Which by the way, I am SO over.
The nurse says that Emily can run around & play but Emily HATES having to take the backpack thingy that holds the pump with her everywhere. She hates being hooked up to the medicine. More than once she’s taken off without the backpack & pulled the Broviac a little. Which then makes the nurse get a little crazy.
Thanks for the prayers, we really appreciate them.
AnonymousJune 1, 2006 at 8:03 pm
[SIZE=3][FONT=Times New Roman] Hi Kelly. You are doing the right thing by getting Emily to a big city University Hospital. When my Mom was first stricken with this horrible disease I was at the mercy of my brother and his wife’s interpretation of the situation. Not that I didn’t talk to my Mom, but frankly one doesn’t think right when hit with something this bizarre. Heck my sister-in-law said Mom was pronouncing the disease as Can/Barre. That didn’t aid in my research. After suffering thru to get the correct spelling I found this wonderful site and entered in a full blown panic. I wanted info, and I wanted it now! I was sick from headaches from reading the forums and I hung out in the chat room all night while reading in hopes of speaking in real time with anyone that knew something about GBS. [/FONT][/SIZE]
[FONT=Times New Roman][SIZE=3]I found the help we needed here. Mom was Dx’ed in Oct. of 2002 and still in a rehab center around Christmas of that year. (my family went to spell my brother and his family while the visited back home for Christmas) I had learned a few things by then and questioned the PT at the rehab center, he was a doctor. I didn’t realize at the time that it was a PhD not an MD type of doctor but blithely went on describing how harmful over exercising can be to a GBS patient. He assured me he knew how to treat GBS, and like my Mom, I think he went home at night and read a book on the correct spelling of GBS.[/SIZE][/FONT]
[SIZE=3][FONT=Times New Roman]Christmas morning 8 Am we are in the hospital with yet another relapse, Mom had had it and so had I. We, well Mom got her self flown to Philly, Angel Flight, and I via this site found the correct hospital for her to be treated. Even the LPN’s there knew about GBS and it’s treatment. [/FONT][/SIZE]
[FONT=Times New Roman][SIZE=3]Kelly I can’t say enough about how rare GBS is and how much one who has migrate to the larger hospitals. Too much damage can be done with the inexperienced doctors and PT’s plogging thru snippits of articles they read some where.[/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3]I know Emily is 4, just the best age to be as a child, and you are dealing with more than GBS; however don’t forget to take care of yourself. I know it is falling on a deaf ear, because I would do anything for my Mother. (I know Mom! Stop complaining about the short visit we just had together) But give yourself a break, find something to relax. LOL I found ironing to be the best thing for me. It was one thing I could control.[/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3]You are in my prayers,[/SIZE][/FONT]
[SIZE=3][FONT=Times New Roman]Karen (KC) [/FONT][/SIZE]
AnonymousJune 1, 2006 at 9:14 pm
I can’t remember if I gave this to you yet or not, here is a link to information about my Neuro. at U of M, [url]http://www2.med.umich.edu/departments/neurology/index.cfm?fuseaction=neurology.facultyBio&individual_id=103766&um_department=Internal%20Medicine[/url]
He also does clinical research on GBS. He isn’t a pediatric doctor but he is wonderful. I bet if you contacted him he could get you any referral or anything else you needed. If there is anything I can do to help just get ahold of me.
I hope you all are doing well. Take care.
AnonymousJune 5, 2006 at 8:04 pm
Dear Emily’s mom,
I was curious if anyone else in your family displays symptoms of GBS or CIDP? I’ve had CIDP for four years. My daughter has similar symptoms and I’m very concerned. Actually, all of the females display the same symtpoms (fatigue, extream weakness, numbness, etc.).
Thank you in advance for any information you can share.
AnonymousJune 5, 2006 at 8:16 pm
I think all the women in your family need to get tested for other illnesses before being tested for CIDP. GBS/CIDP can mimic many other illnesses so they would have to be ruled out first. So illnesses that mimic GBS/CIDP are:
Chronic Fatique Syndrome
West Nile virus
and the list could go on.
They need to get to the bottom of their symptoms now.
Take care. 🙂
AnonymousJune 5, 2006 at 8:16 pm
I don’t have any of the same symptoms that Emily has. My grandma is diabetic & has problems with her feet & knees. I do have endometriosis which is an auto immune disease.
That’s very strange that you all have the same symptoms though. Have you all been diagnosed with CIDP or GBS? I’m sure that would be very interesting to some doctors & researchers.
AnonymousJune 5, 2006 at 9:45 pm
I am sorry to hear Emily is still haveing problems. I have had many relapses and have recovered enough to walk on my own, and presumably live a “normal” life. I beleive that youth has been on my side throughout this disease, and hopefully it will be the same for Emily.
If you need anything, I am here.
Emily and your family are in my prayers,
AnonymousJuly 27, 2006 at 3:18 am
[quote=Emily’s_mom]Are there any anti-inflammatory medications to give her?[/quote]
Hi Emily’s_mom, first of all, am sorry to hear abotu what’s happening to your daughter and I hope that she will pull through the soonest. As for your question, I know about one medicatioon only, unluckily, that can give her relief from the inflammation, and it’s called (link deleted by administration)..being an anti-inflammatory agent, it can help your daughter a lot in that case. I hope this helps you, and take care of her and of yourself too. Dont stress too much. Stay blessed.
AnonymousAugust 1, 2006 at 2:41 pm
I’ve finally convinced her dr that she’s on relapsing course of every 6 weeks. I think I have him convinced to up the the IVIG every 4-5 weeks to ward off the relapse. If we can do that then her inflammation should be kept down.
Thanks for the info though.
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