AnonymousDecember 7, 2006 at 9:58 am
my 2 1/2 year old daughter was diagnosed with gbs on november 2nd. she received ivig treatment, and it affected her legs mainly and her hands alittle. she is home and recovering. I know that recovery is different for everyone, but I was curious how long it other children to recover. she is standing with support and will take a few steps to me holding on to things, she hasnt totally regained her balance back. we go to PT 2 days a week. any feedback would be helpful, its really hard to see her struggle. Dawn
AnonymousDecember 11, 2006 at 4:40 pm
My seven year old was diagnosed with GBS in mid June and received IVIG as well…she did two weeks in rehad then went on to OT and PT for six weeks.
When she first started I was transporting her in a stroller…by the time 6 weeks was over she was ready to start second grade and participate in gym class. She still has to wear sneakers all the time but she is doing really well.
Hang in there…this is a difficult time but you will be amazed how quickly they bounce back. Watching the child is the hardest part.
Please keep us posted on your child’s progress. My thoughts and prayers are with you and your family.
AnonymousDecember 16, 2006 at 10:27 pm
What she said. My 5 yr old grandson had a mild case about the first of August and is mostly recovered. He still gets tired really easy and is walking with one foot splayed out. His school therapist says he is still uncomfortable about balance and has trouble hopping on one foot but his hand strength is up. Sure am grateful for all the support he gets at school. We had an IEP meeting last week and had 5 support staff there!!
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AnonymousJune 13, 2006 at 1:25 pm
My Mother is still recovering from GBS. She is in a rehab sub acute facility. She was intubated and still has the trach color but is being capped everyday and hopefully by the end of the week that will be gone. Her movements are coming back. It has been 123 days since this all started and I Thank God everyday Mom is still with me. I know it is hard for her to lie in that hospital bed everyday all day and depend on others to care for her, but I am with her everyday and I know that helps. She is 78 and strong willed. She is motivated to get better and works very hard in physical therapy everyday.
I want to THANK all of you for your information on the medications to help with the tingling & numbness. I took her to a Neuro and I didn’t mention what I researched but he did perscrib the Neurotin and she is doing better now with the pain. This routine for me everyday of going to work, visiting Mom and then going home to my family is very tiring. But I keep going and say my prayers everyday and Thank God for every little thing she accomplished everyday.
Thanks for listening. Devoted Daughter Donna
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AnonymousMay 27, 2006 at 11:25 am
Hi everyone…Does anyone have information about full recovery/remission from CIDP? My reflexes have returned and seem to be staying. My neuro has also decreased the amount and intervals between IVIG and I continue improving. Any information anyone has on this would really be appreciated…Thanks…Annie
AnonymousMay 27, 2006 at 1:37 pm
Sounds very promising, how many IVIG treatments did you have? What symptoms did you have? Did you have progressing or remitting type of CIDP?
I have heard that about 10-20% goes into full remission. It would be great to hear from a person who actually succeded! It gives hope to everyone with this problem.
Greetings from Sweden
AnonymousMay 27, 2006 at 1:53 pm
It doesn’t happen to everyone, but, YES THERE DOES SEEM TO BE A RECOVERY. I have been off ALL medications for 2 1/2 years now and though improvements come like a snail moving, I am improving. I have shown no sign of a relapse. I am at a point where I don’t need a neurologist. When you have stopped progressing, myelin can re-grow and when this happens you heal.
I am a very cautious person and I silently observed myself for a year before the IVIG’s were stopped. I realized during that period that I didn’t relapse, I never got worse and though my neurologist was great and familiar with CIDP, I went into New York City to see another highly qualified neurologist. The two consulted and my neuro decided to withdraw IVIG’s completely.
AnonymousMay 28, 2006 at 9:04 am
I think that I may be pretty much an exception on these boards… My first symptoms (terrible aching in my arms and along the backs of my legs) led to the tingling which moved from my finger tips and toes to the “glove” stage most medical articles describe… As the numbness progressed, so did the weakness… By the end of the month (last July), I could not climb stairs, but had to pull myself up them… I had spent that month going to my primary care physician and he could not figure out what was going on with me… He ordered MRI’s done the end of the month… I spent August seeing neurologists (first to dismiss MS as a possibility) and having another MRI done… I was sent to another neurologist who did the actual tests on my nerves (the ones with the long needles and the electical-shock ones… By the time I got the diagnosis on CICP on August 24th I thought I was getting a bit better… He discussed treatments with us and gave me a month (unless something changed ) to think about it… I was given a prescription for gabapentin (100) for the pins and needles which were my biggest discomfort… By the end of the month I was able to climb stairs again (though always with a need to hold onto something) and was able to turn keys in doors again… He dismissed me as a patient unless something changed again…
I have taught school the whole year, though it has been very hard… I get to the point of near exhaustion during the day and would have given anything to be able to go and lie down for a while, but that can never happen in a special education classroom (in addition to classes to teach, kids come in to get help with their assignments and to take tests)… I had one aide for 2 1/2 periods out of 7 during the day… I was promised “all the help I needed” at the beginning of the year, but it never materialized… I am going to apply for a disability this summer (6 more school days left) when I have time to work on the paperwork… I have had the application for 6 months but never had the energy to do it…
Anyway…. I guess I have had a spontaneous recovery with the only residual effects is that my arms get tired when I type too much (now), my fingers are sensitive to paper work (lots in special ed), I can’t stand for more than a minute or two at a time, and the fatigue… I have an appointment to see my neurologist when school is over (June 8th, I think) because of a new symptom… my right foot feels like it is slipping out from under me etimes… I have started using my cane again in the hallways, because of this.. Because of it, I have also noticed that my gait has changed… I lead with my right toe for some reason unless I make a conscious effort to lead with my heel… I have no idea what all this is about…
Sorry, this is so long…. but if this a recovery, then it is… I have never had a “relapse” if that means where I loose so much strength again… But then, I am coming up on the anniversary of my diagnosis in 2 1/2 months, so I don’t know if that is long enough to say that I have “recovered”… :confused:
AnonymousMay 28, 2006 at 1:24 pm
Welcome to the Forums.:)
Everyone’s recovery is different. It depends on how much nerve damage has been done to the body. So 1 person might heal within a few months where another it takes years to recover. Then there is a percentage of whom never recover. I hope you are one who heals very soon.
Take it easy and rest when yoou get tired, fatique is a huge factor with GBS/CIDP people, even years afterwards.
Stay with us and let us know your progress and if you have any other questions, everyone here will be glad to give you answers. 🙂
AnonymousMay 28, 2006 at 3:15 pm
Welcome, Annie. I have been away from these boards so long I feel a little strange about saying “Welcome” but anyway, glad to meet you.
I was diagnosed about 4 years ago, Ist treated with pred/IVIG x 1 round/methotrexate, but quickly moved to methotrexate alone. I have had nothing for over a year except 2 or 3 little short courses of prednisone and one half-round of IVIG 6 weeks ago. The problems come and go and I think “Hey! If it went away before it will go away again.” The main problem I have now is fatigue in the afternoons, some clumsiness, and poor core strength. 6 weeks ago I had chronic hoarseness and couldn’t get a deep breath–clearly time to take action. It comes and goes. I just try not to capsize on the waves.
I have heard of another person, was it Gertrude? who has had CIDP for decades and went 8 years between episodes once. Am I right? Does anyone else recollect this?
You might be over it for good though, especially if you are a young’un.
AnonymousMay 28, 2006 at 7:40 pm
Thanks for the replies. Here are answers to some of your questions. I have had CIDP since 2002 and have had regular IVIG treatments…every 3-4 weeks-since then. I was diagnosed and started treatments within a few months of the first big symptoms…not being able to go upstairs, walk more than a short distance, the usual numbness,tingling, shooting pain. My reflexes have returned and I am able to function fairly normally. I do yoga and water exercise regularly. Your replies are encouraging…especially the information about 10-20 % recovery rate.
I would appreciate any more information or cases of people recovering completely. I am hesitate to stop IVIG but I gather from Liz that that is probably the only surefire way to tell if the myelin has returned. I guess a spinal tap or EEG could confirm it as well. Anyone know…Thanks again for the replies…Annie P.S. I am not a young’un…Just a tough old bird….
AnonymousJune 4, 2006 at 2:06 am
Good to hear from you again. The first word in CIDP is Chronic. With most people (80%) there is a relapse-remitting cycle of a sort. Some people are as frequent as three or four weeks apart. I do recall someone who had CIDP, recovered with no symptoms (or very little residuals). And then 8 or 10 years later, had a relapse and is going through it again. They say that 5% of CIDP patients have a spontaneous recovery, and aren’t bothered again. The other 15% are chronic progressive, meaning that symptoms don’t go away, just get worse.
I am glad you are improving. I guess the first step would be to lengthen the interval between IVIG and lower the amount you take. Hopefully there would be no ill effects. As recovery continues, your myelin regrows and things get closer to normal. Fortunately you will be able to recognize the symptoms of a relapse, and get prompt treatment. That is the most important thing for good recovery, prompt treatment.
I hope for the best.
AnonymousJune 4, 2006 at 11:59 am
I am wondering how long are the interval between IVIG? I was dx with GBS Last August then dx. with CIDP Nov. 2005. I have been recieving IVIG 60 gms every 30 days and Cellcept 1000mg 2x times a day. I just visisted my neurologist and my reflexes have returned and I am doing just about everything I want to do. I will cont. on the IVIG and Cellcept until my next visit in Dec. I also take Neurotin 3600mg per day.
Does my treatment sound similiar to yours?
AnonymousJune 8, 2006 at 7:32 pm
Pam…I am taking 39 g for one day every six weeks. I originally had 55 g for two days every three weeks. I expect to go to eight weeks after I see my neurologist in August. I am doing well with the lesser amount and just hope it continues. Good luck to you, too…Annie
AnonymousJune 9, 2006 at 12:45 am
From reading others posts, it seems to depend on the time elapsed between the relapses. The closer together it is just a downward swing. BUt when you get a pretty good recovery (months or years) between, it would be like a brand new attack. Since you have lived through the symptoms, they are easy to recognize.
Many people start those posts by, “here I go again” which implies to me that the pattern is very close to before. But I wouldn’t think it would be necessary.
For me, I get a new place of numbness that doesn’t go away, Or I will weaken and tire quickly
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