recovery: should I be worried?
AnonymousApril 9, 2007 at 11:35 am
Hi, my daughter, age 11, had what docs initially said was a mild case of GBS (onset 2-8-07). Never progressed past her legs, though she had some mild weakness in arms/hands and extreme fatigue. She was hospitalized for 6 days, tested, observed and released, unable to walk except very short distances w/ walker, with the prognosis of complete recovery in 2-3 weeks. Well, after 2 weeks with little improvement (some improvement in fatigue level), we called neuro, he examined and said hmm, looked like axonal. A week later, based on what I found here, I asked about ivig, he said, might cause more issues, plus was still ruling out other things. By the time other things ruled out and we were able to get in w/ another dr, too much time had passed for ivig to be effective (i was told, needs to be done while GBS progressing, and hers had stopped). So, what we are left with is: newest emg has ruled out axonal gbs. emg results indicate recovering fast. Which of course we are thrilled about!
She is doing better in many ways, has much more stamina; but when tired she nearly falls asleep sitting up (kind of zones out–looks awake, but jumps a mile when you talk to her). This is happening less and less. She is in school part days and this helps keep her spirits up, seeing friends, learning. She is in a wheelchair for school. Schoolwork is fine as long as not too much. I am keeping time for rest and PT and don’t send her to school if PT visit has worn her out. She is cheerful and hopeful most of the time.
She still can’t walk though. No better than 2 months ago! Which is, 25 ft or so max with walker, legs shake/jerk, feet drag, anything further wipes her out. Doing PT at home ourselves 2x a day, PT appts 1-2x a week. Will run out of coverage for PT in about 1 month, though we can afford to pay for some addl visits, not sure how many! Doctors say she should be better anytime, but they also say not to be concerned yet at lack of improvement with mobility. They say it will happen. Talked to neuro nurse other day who said I was being ‘negative’ for being concerned about ongoing lack of mobility. No, I just want my daughter to be able to do the things she used to do. Or some of them! If they just said, look, it might be 6 months, relax and keep doing PT, maybe I’d be more patient, and know how to plan better. But they all say mobility should improve ANY TIME now. Her primary care doctor seems puzzled that she isn’t much better, but her primary has never seen a case of GBS and admits that she doesn’t have much expertise.
What I want to know is, should we just wait patiently, knowing we’ve done all we can do? Or is there anything else we should do? Anyone else’s experiences with rate of recovery would be appreciated! Maybe because she never had ivig, the recovery will just be that much longer?
Thanks for any advice.
AnonymousApril 9, 2007 at 4:50 pm
I would recommend finding a dr that is familiar with GBS. We saw a dr briefly at an MDA (Muscular Dystrophy Association) clinic who was knowledgable with GBS/CIDP. They have clinics all over the place, so maybe you have one in your area.
My daughter was 4 years old & dx’d with GBS last year. She relapsed a few months later & re-dx’d with CIDP. She responded quickly to the IVIG. She was back to nearly normal after her 2nd IVIG treatment. We were told that she was getting better before receiving the IVIG but we chose to give it to her anyways just to ensure that she would not get any worse. It took 2 days, once in the hospital, for the dr’s to come up with dx.
For most people with GBS the recovery is slow. There is no timeline on how long it takes to get better – it’s different for each person. The thought is that children recover better & quicker than adults do. Believe me when I say I know how hard it is to see your child who was active & healthy having a hard time walking. There are alot of questions & uncertainty.
I don’t think you are being negative. I think you are being concerned. I really think that once you can get with a dr that knows more about the disease & can accurately address your concerns that you will feel much better.
AnonymousApril 9, 2007 at 5:16 pm
I am so sorry to hear all that you are going through. I can empathize with you so much. My 4 year old daughter starting stumbling in school on September 27 2006. October 5 she was admitted to the hospital, had a bone scan, MRI, lumber puncture, and EMG within 24 hours. At this point she couldn’t sit unaided and her arms were weakening. She was helpless. She had always been the most indepedent child, but in her last couple days at home had figured if she didn’t drink anything, I wouldn’t have to manhandle her into the bathroom for her to go to the bathroom.
They concluded that it was GBS and gave her two doses of IVIG. The ped neuro normally gives it over 4-5 days, but he was out of town for the weekend (go figure) and his partner ordered it differently. She remained in the hospital for 2 1/2 more weeks for intense rehab. Abby was very popular in the hospital, and everytime we saw a different resident or med student or anyone, they would always ask if she was wlaking yet. I thought they were all nuts, as we were still working on sitting unaided! I never knew people bounced back so fast!
When Abby came home, she wasn’t even crawling It has been an extremely long 6 months. I don’t want to discourage you, but she uses a walker, and they are unsure that she will wlak unaided again.
We went to Cleveland Clinic and saw a peds neuro there. I know on this website that CC doesn’t have the best reputation, but at this point I am happy. Our local neuro didn’t want to subject Abby to another EMG due to pain; at the Cleveland Clinic it was recommended, and they will do it under sedation.
Don’t let the neuro nurse tell you that you are being negative. I have learned that it is better for my husband to call the doctors offices, as he is more willing to stand up for Abby. When women do that, we are “bitches”, but men are looked at as if “they are just caring for their family.”
It is so hard to navigate through everything, and it doesn’t sound like your doctor’s office is providing much assitance. Your PT should be working with your insurance company to get more visits approved. We have had to do that numerous times, as so far it has gone through.
Has your daughter seen a physical medicine/rehab doctor? There is a longer/technical name for them, but it always escapes me. Our pm/r dr. has been incredible. She is a peds specialist, which are difficult to find, but she has also helped us with so much. I would see if there are any around you.
I am going to email you my name and phone number. I am in the Bowling Green area.
AnonymousApril 10, 2007 at 2:33 pm
There is no time frame for recovery with GBS/CIDP. It varies from person to person. Fatique is one of the biggest factors in GBS/CIDP people. Let her rest as much as she wants to and if that means sleeping beyond 8 hours a day then let her do that.
Sending her big hugs
AnonymousApril 10, 2007 at 7:26 pm
I am really interested if the PT worked on your daughters’ rolling over and crawling? When I was in PT, I was first shown how to roll over, and my one PT told me that I had to learn to crawl before I can walk. I have spoken to a number of people, and quite a few have been told the same thing, however some dont do that.
AnonymousApril 10, 2007 at 9:48 pm
I also had a “mild” case and the drs. said I was “better” but I was very fatigued and had trouble walking and doing stairs for at least 3 months.
It S-L-O-W-L-Y improved. I still have pain, tingling and cold feelings in my feet, legs and arms, but it is improving and the warmer weather is definitely helping. I am much older, but the fact that it was a mild case did not seem to make a difference in the length of recovery. People on this forum know a lot about residuals and actual recovery time. Hang in there — it is normal to be concerned — this is not something people are very familiar with. It was comforting for me to know I was not alone — the people on this forum are great listeners!!!
Best wishes to you and your daughter!
AnonymousApril 11, 2007 at 9:29 am
Thanks everyone for the encouraging/understanding words. It does help to talk to people who really understand. As for the question regarding rolling over/crawling–her PT hasn’t addressed that. With some help from me, she’s learned to roll over. Crawling–can’t do that yet. (every once in a while I help her give it a try after we do PT at home). But we have PT on Friday so I will ask about that. Even crawling would be a huge leap!
Meanwhile, I’ll just keep remembering: getting better slowly!
AnonymousApril 20, 2007 at 1:36 pm
Our 11 year old daughter was also diagnosed with GBS — last September. Her pediatrician referred her to Children’s Hospital Medical Center (on Burnet Ave. in Clifton).
On the fourth day of her symptoms she had an appointment in the Children’s Neurology Clinic at noon. By 4 pm, she was diagnosed. That evening they did a spinal tap to confirm diagnosis. Her IVig was started by midnight.
On the day of her appointment (the 4th day of symptoms) she was unable to walk and was very ill. She also suffered facial paralysis while she was in the hospital. The doctors believed she had the AIDP type of GBS, and it apparently followed a virus.
The neurologists at Children’s told us they see about 12 GBS cases per year. We felt that the Children’s Neurology Department was knowedgeable about making a GBS diagnosis and prepared to deal with it.
Since you’re also in Cincinnati and have an 11-year old daughter with GBS, I thought I would tell you about our experience with Children’s.
Good luck to you.
AnonymousApril 24, 2007 at 12:28 am
Our daughter is well and able to pursue a full schedule. She’s playing soccer and softball now, and may be just now learning to walk/run/jump again the way she did last summer. Her feet still hurt whenever she’s on them, but she really did not like the gabapentin and would rather suffer the pain. It does still hurt sometimes even to walk just a block.
We have been advised that if the foot pain and change in her walk/run/jump are due to damage to the myelin sheath, we’ll just have to wait for it to get better. The docs have ruled out muscle and bone problems in her feet. Therefore, they feel that PT will not help — her muscles are OK, and her regular exercise will retone her muscles.
Her face recovered completely within a couple weeks of coming home.
We may consider an alternative for the foot pain — perhaps acupuncture or massage. We’ll check with her doctor first.
Re: the nurse’s comment to you — I remind myself that if my husband and I do not advocate on our child’s behalf, then who will?
I responded to your private message.
I wish you both good luck.
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