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Living with Polyneuropathy CIDP, GBS, & CMT

Anyone have a young child with gbs/cidp?


#1

I have a 4 yr old daughter that was dx with gbs then later cidp after a flu vaccine…Anyone else here with a child/teenage child with this? I Would love to talk to others going through what we r going through, this last year has been by far the hardest year I have ever been through in my life. Praying that it gets better and prayers to all!


#2

Praying for you and hoping you get the information you are looking for. I was dx with GBS and then CIDP following a flu shot, but I was 29 yrs old at the time. Although my wife would tell you that it was like taking care of a kid, I can’t imagine going through that as a preschooler. She’s lucky to have a mom who’s looking for information for her - that’s really the key - understanding it as much as we can. I can only offer to share my experiences to help you interpret what she’s experiencing. My wish for you is that she will find a treatment that works for her and be as fortunate as I’ve been in minimizing the symptoms. It takes years, but it’s so worth it.


#3

Hi, I may know of someone who might be interested in corresponding with you. I believe her daughter is right around your daughters age. (From another board I'm on). I will find out for you if you want to give me your email.

Mine is ■■■■■■■■■■■■■■■■■■■■■

I was just diagnosed with CIDP this August, but I've been sick for about 8 years trying to find out what is wrong with me.

I'm having a very hard week .. this disease can be so terrible for those who have it and the families who suffer along with them. Write me if you would like me to pass on your info about you and your dau.

Sincerely, Melanie


#4

I'm 15 and I was diagnosed with cidp at 2.


#5

Thanks Sunny thant would be great:) I hope your feeling better…I will email you!


#6

Hi Charlotte:) Thanks for your reply…So sorry that you have Cidp at such a young age:( How have you been doing? and How has and does this disease affect your life? Prayers to you and your family.



charlotte_1996 said:

I'm 15 and I was diagnosed with cidp at 2.


#7

Thanks Tom for your Reply, Prayers to you and your family:)


#8

The disease doesn't affect my live too much just when my treatment starts wearing off. I get treated every 8 weeks and at about 6 weeks I start feeling week. My handwriting gets quite messy and I find sports at school quite hard but I manage. I have to miss a bit of school with hospital visits and treatment which wasn't too bad but next year I start my university entrance exam years so it might be a bit harder. I find it manageable to live with and I'm just happy its not worse.



R&RMAMA said:

Hi Charlotte:) Thanks for your reply...So sorry that you have Cidp at such a young age:( How have you been doing? and How has and does this disease affect your life? Prayers to you and your family.

charlotte_1996 said:

I'm 15 and I was diagnosed with cidp at 2.


#9

I used to get treated with IVIG a lot more when I was younger. I used to get treated every 4 weeks for 2 days when I was younger but now I get a bigger dose every 8 weeks and it takes 6-9 hours. I currently get 33grams but it is due to go up again



charlotte_1996 said:

The disease doesn't affect my live too much just when my treatment starts wearing off. I get treated every 8 weeks and at about 6 weeks I start feeling week. My handwriting gets quite messy and I find sports at school quite hard but I manage. I have to miss a bit of school with hospital visits and treatment which wasn't too bad but next year I start my university entrance exam years so it might be a bit harder. I find it manageable to live with and I'm just happy its not worse.



R&RMAMA said:

Hi Charlotte:) Thanks for your reply...So sorry that you have Cidp at such a young age:( How have you been doing? and How has and does this disease affect your life? Prayers to you and your family.

charlotte_1996 said:

I'm 15 and I was diagnosed with cidp at 2.


#10

Hello,

I was 7 when I also reacted to the flu vaccine and was first diagnosed with GBS and then CIDP/CIAP. It's been extremely difficult, for both me and those around me, especially my parents - but be sure to keep her attitude up, even when things are hard, point out all the little things in life that are worth smiling at. My father is a psychologist, and through everything he has been sure to comfort me when I'm upset but also taught me to pick out the little drop of sunlight on a rainy day, and I've not only grown stronger physically since, but also emotionally.

It's so rare, and I only know so much, so I can't tell you how much the recovery results vary, but it may be of some comfort for you to know that now, 8 years later, the only thing I lack is being able to pull my foot up, causing me to walk a little funny - but even that is coming back, very slowly, and I can run and dance and all sorts of things. I've even started ballet. My prayers go out to you, and although I don't know how much about my recovery process applies to others with CIDP, I'd be happy to answer any questions you have. (:

(update:) After reading other stories, I realize that CIDP stories actually vary greatly - I feel very lucky to have recovered as well as I have.


#11

I am 14 and was diagnosed with CIDP at 11.


#12

How r u doing CC? Do you get Ivig?


#13

No I don't


#14

Hi my 7yr old son was DX GBS with Miller Fisher variant then later on CIDP... It is really hard seeing your kid going through a lot of pain and hardship. We too are praying that he gets better everyday.


#15

Sorry to hear about your son:( How is he doing? Does he have many relapse? My daughter has a relapse about every 3 weeks and needs Ivig treatment for 2 days. We are going to start steroids today for a week just to see if will give her a extra boost, these last few relapse it seems she hasnt got back to doing good just okay! *prayersto you and your son*


#16

hi there, my son is 7 and has cidp. he has ivig every 4 weeks, its helping everything but hes got total foot drop on the left side, no tendon reflexes, daily physio and a leg brace. hows your daughter? has she started treatment? what were her first signs?


#17

Sorry to hear thay about your son jrnation:( My daughter Reese gets Ivig every 3 weeks she used to get it every 2 weeks then 4 weeks but since sept hasnt been able to make it 4 weeks so we went to 3 weeks.. Reese also has a foot drop in her left foot and wears afo's (sometimes) she is doing really good right now but I know that can change at any moment:( no reflexes at all, she sleeps alot and gets a lot of headaches, her first signs were falling every few steps, couldnt stand up from sitting without help, couldnt go up and down stairs, at one point it affected her arms and she couldnt lift them to feed herself, last Dec she couldnt walk or move her legs at all she was in a wheelchair for a month but after ivig, steroids and a 2 week stay in the hospital getting pt and ot she was able to walk out of there, we still see the same signs usaully every 3 weeks or so we get her in asap or she starts to get bad and then its harder and longer to recover:( She also has a port a cath. Does your son? The one thing she gets upset about is that she cant run:( I would love to hear your story *prayers to you and your son*


#18

wow, it sounds like it happenned really fast in her case! graham has had an odd way of running for a year or so, he was checked over, xrayd, they found nothing so i figured, well, ok, so he runs funny, no big deal. this past summer he went with his dad ( my ex) on a vacation where he says he was swimming and some other kids landed on his legs after jumping in the pool, so he came home with this limp. he was home 3 days before WE then left for vacation. we went to niagara falls where he was having a really hard time keeping up, the limp was still there. a week later we were home, STILL limping. made a drs appt for a few days after, the dr sent us to a pediatritian at a local hospital, who (that same day) sent us to bc childrens hospital (the biggest and best in our province...yes we are canadian:)) they admitted him, and after 4 days of mris, spinal taps, blood tests, nerve conduction studies etc they finally ruled out ms (THANKFULLY!) and diagnosed cidp. honestly, this sucks, but im still just so so glad its not ms.


#19

I have a 2yr old that was diagnosed with Cidp after GBS. He has had 3 treatments of IVIG. He gets them about every 4 weeks and is due for his 4th now. His symptoms started in his legs and after 4 dr visits, nobody could tell me why my little boy couldnt walk. Finally broughthim to an ER where he got a CT scan and an MRI and saw a nuerologist who dx as GBS. then he relapsed in 4 weeks, got another treatment, then relapsed again in 4 weeks. now he is dx with CIDP. They are talking about putting a port in him, so he can do his treatments out patient, and because he hates getting the IV. It is hard on me cuz at 4 weeks, he slows down and cant keep up with his brother, I worry for him and think he wont have a normal childhood, or even life...then I remind myself that at least there is a treatment that works for him, and to enjoy every second together. How did your daughters symptoms start? does she get IVIG?


#20

Sorry to hear about your baby:( My daughter was dx at 3yrs, her symtoms were falling every couple of steps, she couldnt walk up or down steps, She couldnt stand up without help and eventually couldnt walk at all for about a month. We had to switch hospital and the new hospital they didnt give her the same brand of Ivig and it didnt work and it took 1 month of us returning to the hospital, them sending her home going back getting treatment again, sending her home just as bad if not worse as when she showed up and me finally finding a new neuro and going to a new hospital to find out the ivig was not the same from hospital 1 to hospital 2 (that claimed it was the same)Now we r at hospital 3 who kept her for 2 weeks and got her walking again( we r happy with third hospital been going since Jan 2011).She has been getting Ivig every 2 to 4 weeks for the last 14 months(outpatient since April 2011). She also has a port, they're is good and bad with that but yes its alot easier on the lil ones then getting the iv in their arm everytime. Yesterday and today she got her Ivig, then goes back in 3 weeks, she also gets ot and pt. Prayers to you, your son and family, I know how you feel after 14 months living with Cidp I still worry all the time:( Do you know why he got Gbs/Cidp? I'm 100% sure my daughter got this from the h1n1 flu vaccine(symtoms started 3 weeks after) *Amy*