HELP! Inflammation

Hi Kelly,

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.

Hi Kelly

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. 🙂 🙂 🙂

Kelly,

Let me know if I can help in any way. You have my number and you can call anytime. Take care.

Jerimy

Your very welcome 🙂

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.
Peace,
Mary

[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]

Kelly,

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.

Jerimy

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.
Julie

Hi Julie,

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

Epstein Barr

Diabetic Neuropathy

Thyroid problems

West Nile virus

and the list could go on.

They need to get to the bottom of their symptoms now.

Take care. 🙂

Dear Kelly,

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,

Emily

[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.