I feel so lost…
AnonymousAugust 13, 2009 at 12:05 pm
My 18 y.o. daughter was stricken with GBS in Nov 2007 (when she was 16). I am her mother. For the first year, I felt so grateful that she was diagnosed and treated within hours; and that the paralysis never progressed above her hips. Although she relapsed once 1 month after the initial attack, she seemed to bounce back very quickly. She wasn’t able to go back to school for the remainder of her Sophomore year, so we were put on the home-bound program. She looked forward to returning to school for her Junior year; but the unrelenting fatigue and the unpredictable muscle spasms (that freeze her legs in a contracted position and render her unable to walk) kept her in bed at least 3 out of 5 days weekly. So she attempted on-line classes and hoped to return her Senior year. She continued PT with no improvement and had occasional bouts of pain in her legs. Over the last six months, the bouts of pain have become constant pain. We have found no relief from any drugs (narcotics included), PT or meditation. The Senior year she has looked forward to is unlikely, the friends are becoming distant, she is embarrassed to have gained so much weight, and the pain keeps her in bed wimpering. The doctors are no help, everyone here views GBS as an acute illness only and don’t recognize the residuals. The Physical Medicine doctor feels that it is an issue of deconditioning and she needs to just get up and start doing more. How many 18 yr olds do you know that would choose to lie in bed over hanging out with their friends? They make us feel like she is just a hypochondriac and the GBS should be behind her now since she did not have a severe case. And these are the doctors at TX Childrens in Houston, TX! I don’t know what to do for her, she barely talks anymore. I was hoping to find someone around her age on this forum that she could talk to but it doesn’t look like the teen forum is active anymore. Someone please tell me what I can do to help her…it is so hard to watch her suffer and not feel like I am helping.
AnonymousAugust 14, 2009 at 12:19 am
Mom of GBS teenage daugter,
I am so sad to hear of your daugther’s plight. This syndrome is horrible for all, especially young children. I must be devastating.
First of all, I would recommend posting this message of yours on the Teen forum and see what kind of responses it brings. Who knows?? Got nothing to lose, right? 🙂
Good luck and tell ur daughter that we all here on the forums are praying and hoping for her recovery and rejoining her social structure.
AnonymousAugust 14, 2009 at 9:30 am
Hi: It is very hard to go through this disease and then deal with the residuals, especially when doctors don’t get it. I am older than your daughter but have similiar issues. I must lie down much of the day-can’t sit more than a few hours without the pain coming. I have a few suggestions for you:
1. Let your daughter know what she is going through happens to other people with GBS as well. She is not alone, she is not making it up and it has nothing to do with deconditioning.
2. Get a doctor you can work with. Neurologists are awful with residuals in my experience, and many other doctors don’t know about them. I and others have found physiatrists very helpful. They specialize in pain control and in teaching people with disabilities how to get their lives back. My physiatrist was, and still is, a great help to me.
3. I have to lie down much of the day as I said. I found lying in bed very depressing, so I set up my family room with all my fun stuff and lie on the couch. I am part of the family more that way and have found things like bed desks to make my life work better.
4. There are ways to work with fatigue and pain other than medication. Does she use a wheel chair or scooter to get around? Not walking at all can help a lot with pain control. People who can walk, but have pain and fatigue issues often need wheel chairs to conserve their energy and keep the pain down. Has she tried therapy pools?
5. Find a GBS support group in town if you can. Go with her to local meeetings or ask some people to come and talk with her. Getting support from people in the flesh can be a great help.
6. You might need to think of getting a therapist to help her and perhaps your whole family. Depression is a common residual and should be treated as another residual that needs attention and perhaps medication. At her age especially I would think depression something to watch very carefully.
7. Finally she is very young and not that far out from onset. There is every reason to hope for recovery of some kind. Let her know that people even five years out can get some improvement and especially young people.
Nothing will make this get better soon unfortunately, but don’t give up. Try to work with her and, again, the whole family group to find support and ways to live that are less taxing. You mention medications-my physiatrist told me of at least five different ones to work with pain. Has she tried neurontin? Of all the things I mentioned finding a doctor to work with is perhaps the most important. See if you can find a physiatrist to talk to. Good luck. Jeff
AnonymousAugust 16, 2009 at 12:40 am
Hi rjmutz, Welcome to the Family. There are a number of meds that are used to help control pain. Pain needs to be controlled then the work on the fatigue issue can begin. Positive support and being her advocates is the best thing you can do for her. She needs to be seen by a good neuro who knows GBS/CIDP. Has she been tested for CIDP? Quite often people who had gbs eventual go on to develop cidp. It really sounds like she has progression with remitting and relapsing. It needs to be investigated. Everyone is different and finding the right meds or mix of meds to help control pain is quite a task sometimes. Don’t give up. I would find another pain management Dr. Is there anyway she can get a scooter for school? There are ways to get through all the redtape surrounding all the issues your daughter is having-its just a maze sometimes. Please feel free to ask any questions you might have or vent when you or your daughter needs to. We understand. I will send you a private message(pm) with some info. Take care.
August 17, 2009 at 10:39 am
Check your private message.
AnonymousAugust 17, 2009 at 9:11 pm
Sorry you had to find us but welcome. This board is full of wonderful, knowledgeable friends. Like you I too am the Mom of a GBSer…..a two time survivor. My Brandy was stricken at the age of 14 with a severe case and we were on vacation in England when GBS reared it’s ugly little head. By the time she was able to fly and we could finally come home, she was 32 lbs lighter, in a wheel chair and school had been in session for 3 weeks. She was just entering high school. Brandy had a remarkable recovery and within a year had returned to all of her activities……….not without residuals, fatigue being a big problem. 2 years later mentally she hit a wall so professional help we did seek. Brandy was placed on zoloft and met weekly with a counselor….it was what Brandy needed. The ability to talk about her illness, the fatigue, her feelings. Although she looked “normal again” inside she wasn’t. They diagnosed her with PTSD (post tramatic stress disorder) and she suffered from panic attacks. The panic attacks would come on without warning or any particular reason. Brandy learned to work through them including leaving class, going to the office and laying down in a recliner. Her high school was wonderful and worked with Brandy through all of her obstacles. Brandy graduated high school validictorian and went on to MSU. She was determined to finish her degree in four years and had auditioned and been selected to be a part of the band, color guard. When she over did things, her residuals were more prevelant so she had to learn how to accomplish all of her goals without risk to her health. Brandy graduated in May 2007 and began her first real job. On September 9th 2007 I received the call I had always dreaded “Mom it’s back”, 8 years to the day we had arrived home from her first episode. A milder case this time around but still she required a vent. Her friends rushed to the hospital and it wasn’t until they saw for themselves that many finally understood just how ill Brandy had been many years before. Within 6 weeks Brandy returned to work part time and slowly worked back into full time. Brandy has since returned to school to earn her RN degree…….a pediatric nurse is her goal. Brandy’s older sister got married last month and Brandy was her maid of honor. Brandy thanked her sister for many things but mostly for always being there to shave her legs and her arm pits when she herself couldn’t. For those that do not know of Brandy”s medical history I’m sure they thought it a strange statement but for those of us that have walked besides her clearly understood the love in those words. As a parent, especially a Mom, it’s so tough to watch our children struggle and not to be able to protect them. Some times it is necessary to seek outside help. My Brandy is now 24 and been where your daughter is. Feel free to email me and we could put the two of them in touch with one another. Some times it’s easier to let kids talk to one another.
My thoughts and prayers are with you, your daughter and your family.
August 18, 2009 at 3:22 pm
As one who went through GBS, and now relapsing CIDP, I agree with
Angel2ndclass’ coments about CIDP. From your short post, it does not appear the doctors are very interested in your daughters case. Have you considered the Univ of Texas neuro clinic in Austin for a second opinion? If memory serves me correctly from the last symposium (and some times it does not) they have several doctors who specialize in GBS and CIDP. Has your daughter been tested for CIDP? Have they also checked/tested her for other neuro diseases such as MS, Parkinson’s, etc? Has your daughter’s doctor or her physical medicine doctor handled any other cases of GBS?
It is a tough disease, physically and mentally, but keep after it. A second opinion from someone who specializes in rare neuromuscluar diseases may be a fresh start for your daughter and give her some hope for the future. Good luck to you both.
The chair mentioned in another post is a good idea, but a teen will have issues with a wheel chair just because. I have a very small flashy red 4 wheeler scooter that weighs only 65 pounds and folds up to carry on luggage size in about 10 seconds and I can take it anywhere. It runs 10 miles on a 6 hour charge. I have a lot of fun with it and gives me opportunities to get out and enjoy things requiring lots of walking, that I would not otherwise be able to do. This may be something that would encourage your daughter to get out to the mall to shop, go to a movie with some friends, etc. while keeping the pressure off her legs. I’ve used mine to tour college campus’s, car shows, antique malls, acquariums, etc. Since it is not my electric chair, I never get a second look, other than people who want to know where they can get one. No one associates this little red scooter with physical limitations.
Look for the positives in what you can do, rather than dwell on the negative of what you can’t.
AnonymousAugust 19, 2009 at 5:27 pm
hi im 22 male i have gone through the same things since i got sick i lost over 90% of my friends i still know them but i guess you really find out whos really gonna be there through the thick and thin i felt so uncomfrtable when i got sick i did’nt like going outside and people and neighbors seeing me in a wheelchair i was very active kid growing up always running and riding my bike was my favorite. but i felt hanging out with friends is very important socializing with people your comfortable with is good thing. about the weight gain try looking up bodybuilding.com i eat oatmeal n some egg whites /w alot of water loses weight fast. tell her to try small baby step excersises like crunches and squeezing and holding muscles once results start coming i believe she will get even more motivated to try harder. try activities she feels comfortable doing. it can be simple ive picked up reading going to a zoo or watching movie being at home all the time can kinda takes its toll i was in bed for my first year and slowly moved to a wheelchair. what i liked was driving around the park slowly or lake. hope that heps if you have any questions feel free to ask best of luck
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