16 year old – cidp

Welcome, yes there are some young people who have CIDP/GBS. The old forums were hacked so alot of information was lost that was posted by other teens. Hopefully now that you posted others will post too. If you have any questions or anything though, we are all here to help.

Jerimy

I was 17 when I had GBS, so I have an idea how you must be feeling. The times have changed a bit since I was a teen, but…

I didn’t access the computer for any socializing/support until I was pretty much recovered. If only they had messengers and forums back then!

As soon as a teen is out of hospital, school is the priority, energy is limited, and house rules apply… so keep checking in and hopefully someone will have found the site!

Don’t be shy – we’re here for you and will help you with anything we can.

Cheers!

From the [url= http://www.gbs-cidp.org/news/2005/article8.html%5D 2005 Communicator Directory[/url]

[quote]
A Teenage Pen Pal Group
Josh Baer 520 Prescott Road Merion, PA 19066 (610) 667-2157 E-mail: [email]GBSTeenPenPal@hotmail.com[/email] Josh had GBS in 1996 at age 11. He is willing to share experiences that others might not understand. To have a teenage GBS’er pen pal, write, call or e-mail to Josh.
(Link deleted by administration)

I am the mom of a 17 year old….male, junior in high school. He was diagnosed in Dec 2002 with cidp. Most of his problems deal with loss of sensation in feet, legs, and fingertips. No, he has no reflexes, but does walk independently, attends school and is active in drama, student gvt. He used to play soccer, but that is out for now. We actually have some medical appointments coming up as he feels he is worsening and ivig does not help. He is taking 45 mg. prednisone eod.

What is your situation?

Hi,

I was dx with CIDP when I was 20, I am now 23. I regressed to the point of complete paralysis and needed a ventilator for 2 months. I have done IVIG,PP,infused steroids, oral steroids, oral chemo, and intraveneus chemo. The chemo is what put me into remission 2 years ago, 6 months ago I began to walk on my own and do almost everything I did before.

I am now haveing a relapse and am seeing my nuero tomorrow to discuss treatments. Before I got sick I was in school and was a photographer at a portrait studio, I really miss life.

I would be interested to know more about you,

Emily

I am the mother of a 2 year old with CIDP. I was a member of the previous board for a couple of months.

Dell was diagnosed in Dec 2005 at the age of 19 mo. I STILL have not been able to locate a young child with CIDP.

He walks with the aid of a walker. When he started his first IVIG in November, 2005, he had almost lost the ability to cruise so I guess since he has advanced to the walker, it’s good, but I want him running around getting into everything like a normal 2 year old.

He can’t tell us yet if he’s hurting so we don’t know if his joints hurt, etc. He is on monthly IVIG and steriods.

I hope you can get some good information from these posts, I’m looking too. Good luck with your search.

Lori

*waves hello* I’m 16 going on 49. I never had any kids, so I never had to grow up. u got ur drivers lic? U get us to the liquor store, and i got an id…

peace
soapy

Lori,

WE have a liaison in Iowa that her son had GBS at 2 years old. He is 5 and doing great now. Her name is Kari Smith, #515-964-7386. She has a PHD in PT. So she can give you professional and motherly advice. Please give her a call.

Emily,

Your story is very interesting. I have only met a couple of people who have had the chemo for CIDP. If you have the time I would like to talk about your experiance. My # is 330-724-2608.

Hi, I got it just before I became 21 years old, in 1984. I just got out of the army and went streight into the hospital. Life was a livin’ nightmare. But I’m sure you will find happiness and love in the future, just like me and many others.

The best of luck…….

Hi,
I have a son who is 12with CIDP. He was diagnosed at 4. He has taken steriods, had IVIG numerous times and took methotrexate for awhile. The methotrexate worked the best for us, but the side effects are dangerous so we are on IVIG again with another brand. It seems to be working well. We go every 4-6 weeks. He is completely mobile but has problems with stairs.
Suzanne

Is stairs your sons only problem? Has all the years with meds hurt him any?

my son has cidp. He was diagnosed at 10 years of age and is now 17. If anyone would like to discuss treatments or progress please let me know.

My daughter (12 yo) has numbness and tingling progressing up both legs ( never her fingers or arms) the highest it went was mid thigh. this was in aug 2006. we were admitted to the hospital and underwent lumbar puncture as well as ct and mri ( trying to rule all sorts of things out) she was discharged a week later on crutches when the numbness and tingling went down to the top of her knees. after a while it went down to the base of her knees and she was able to walk unassisted X 3 weeks. then it went up again and since then has stayed the same (unable to walk w/o crutches since. we went thru the ivig infusion 3 weeks ago with no improvement. Prior to the infusion she started having searing pain up both legs and was put on neurontin and ultram now the doctor wants to refer us to ucsf for a possible nerve biopsy.( he also changed her meds to neurontin and oxycodone because the pain was keeping her up at night) anyone have any comments for us. Both my husband and I are registered nurses, but this ordeal is excruciating because we have no clue if /when she will recover or show some sign of improvement.

We have a liaison in Sacramento, her name is Rose Nagao. #916-421-0682 She should be able to help steer you toward a Dr who has treated GBS/CIDP patients.

If there are any other ?s I can answer for you now please contact me at 330-724-2608.

HI , question for you if you do not mind. I am trying to find a diagnosis for my 8 year old son and I was wondering if you could list your symptoms and the time period it took also some of the tests you had that made they come up with your diagnosis.

Really appreciate it.

Colleen

Mason started with cramping in legs. Everyone told us it was growing pain. We really didn’t notice the tripping and falling, he is so silly. The cramping moved up into his arms, and he was waking up every night in severe pain. Looking back his headaches might have come first. When having the headaches his checks would turn red. They diagnosed the headaches with a head concusion. His frontal lobe was swollen.

His pains moved into his back. HE said it was cramping. He was weak in his left side. He was to weak to push himself up. If he stood up or walked for a long time he would have bad pain in feet. I would have to carry him it was so bad.

He keeps saying he has a hair in his mouth, nothing is there. Nothing taste the same. He keeps biting his fingers when he puts food in his mouth.

The worst pain now have been the stomach pains and headaches. If he does to much or feels bad the other pains start to come back.

I hope this will help you. I am sure there is more, I will let you kow.
I hope your child gets better. What are his symptoms?

Trish

Mason was diagnosed in August. The first admitt was July23, 06. He has had EMG, Spineal Tap, Nerve biopsy, Xrays, and a large amount of blood work.

He is having IVIG treatments every two to four weeks.

Trish

Your sons story sounds some what familiar, I am sure my son had troubles earlier but we did not notice it until one morning his eyes were only half open. What did the nerve biopsy tell you. William had one of those two and the muscle but the nerve showed that the meylin sheath was being attacked. He only had two intervals of IVIG and showed no change and that was it they would not do any more. I think its because of the cost to our health care. Steriods did nothing for him but make things worse with mood swings and weight gain. He too had stomach pain and constipation, I think the pain was an ulcer starting because he was on such a high dosage of prednisone. He also had two EMG the first one showed no nerve conduction at all in his legs and wrists. A year later it showed great improvment. I just want a diagnosis, I want to know what we are up against. Hes a trooper and won’t give up but being so sick all of a sudden and now not being like the other kids has taken its toll on him and us as his behavior can be out of controll, who can blame him, hes mad at the entire world. My son also has a bit of a tremor and hearing problems. Even the hearing aids don’t help much as they say its nerve damage not the hearing drum. So we take things one day at a time seeing doctors and hoping that he totally recovers and that an answer to all this is just around the corner.

Colleen:confused:

I know Mason had tremors, I could feel them. The Dr never acknowledged them. Mason has a hole in his right ear drum, That was from the third set of tubes. Mason was swollen from the colon not from anything else. Once that was fixed last weekend he has not had headaches stomach pains or swelling.

Trish

Hello!
I would like to find a support group with people my age in the Sacramento area. Are there any?

I am new to this site and have lots of questions. My daughter is 22yrs in a few days and was dx 2/07 with cidp and has had 2 infusions I wish you all the luck in the world and will also pray for you. I am worried scared and very stressed. This is something you never expect and I can’t seem to stay away from the pc because I want to learn all that I can. If anyone wants to communicate please feel free to do so at [email]dawn_copeland@yahoo.com[/email] God Bless each and everyone of you. Stay strong and keep the faith.

It is very hard, and it gets harder. Everytime I say out lowd, Mason is doing good he has a set back. I hate this, with a passion. If we could figure out a trigger, or some way to keep it under control. Just when you thank you have it, something else happens.

My 16-year-old son was diagnosed over 2 years ago.

I wish he would spend a little time on this site–he could really use the support–but he doesn’t like to talk a lot about his illness–especially with other kids. He actually tells all his friends he has “back problems”!:p

My son often feels helpless & hopeless.

I hope that you are able to find the support you need from other kids your age. I’ll keep trying to get my boy to join in these discussion boards. (Maybe if there was a cute sixteen year old girl I could get him interested…LOL)

please tell your son to at least read som of the post and stories here, then maybe one day he will feel comfortable enough to wright in. even if he does’nt for now,you can! we would love to hear from you…
god bless,
ms. judy

The Foundation has a list of teens who like to keep in touch. I will send the contact info when asked.