diagnosis maybe GBS?
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October 10, 2006 at 8:14 am
Hi everyone, I have an 8 year old who is currently undiagnosed right now and doctors don’t seem to be so concerned any more since he is getting better. But like all mothers I need answers to this mystery. It all started about a year and a half ago or at least thats when we noticed it that his eyes were drooping, looking back he was running slower and fatigued easily complaining he was too tired to walk, we just thought he was on the heavy side and needed to loose some weight. We took him in to hospital and they figured right away that it was myastinia gravis, but failed the tensilon test but put him on meds for it any ways. the over weeks we noticed he was having trouble getting up from the floor and up the stairs. Back to hospital for more tests. IVIG was given with no change. He had a muscle and nerve biopsy and the nerve showed demlentation (sorry about the spelling). Long story short he stopped walking after that with extreme pain in his legs and wrists. His EMG show pretty much no nerve conduction. Test after test after spinal tap still everything was inconclusive. He lost his hearing as well and docs say this is why it cannot be GBS or CIDP. He also had swallowing problems for awhile choking on liquids ect. Docs gave up after steroids did nothing and he started to have a terrible tremor in his shoulder and could no longer hold his head up. they sent us home saying at the rate this disease is progressing he only had weeks to live. I refused to accept that and sought alternative medicine which to this day is working. Now he still has a hearing loss and really bad balance issues as no feeling in his feet, terrible restless leg syndrome. No pain though. His tremor which was really bad is very slight and does effect his writing. We took him for another EMG exactly a year later and it was an 80 % improvement from the last with issues remaining in his ankles and some in his wrists. Still no diagnosis two doctors who were suppose to be a team were arguing whether its GBS or some sort of mitochondrial disease and never did come to any concenses about it. So we are left wondering, will he contiue to get better, will it return what is in his future we have no idea. Anyone have any simularities or suggestions as to what it may be. I really need answers so I can put my mind to rest and know whats to come.
Colleen
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October 10, 2006 at 8:43 am
Hi and Welcome 🙂 We have learned here that ‘anything goes’ for GBS/CIDP. There are just to many variables with these diseases! Each body seems to have it’s own ‘combination’ of symptoms. Yes, it’s frustrating for medical people but much more for us patients!! There will be others who will come along with ideas for you.
I have had minor hearing issues. Sometimes, when I am very tired, I will have a slight ‘short’ for a few seconds at a time. Thankfully, it has never remained long term. And yes, I often have swallowing/speaking issues. Neurontin was the only thing that worked for my restless legs. I am so grateful that your son has no pain!
Since you do not have a diagnosis, it is difficult for us to conclude what disease process your son has. Can you find another pediatric neurologist? Someone here may know of a doctor in your area. Have your contacted the Foundation for info?? Don’t give up on complimentary modalities!!
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October 10, 2006 at 9:29 am
Yes they have sent a letter to another doctor in a close city to see if he will see us. like everything else in this world it just takes time to get an appointment. Hopefully this doctor is willing to keep testing until we find the answers. Thanks for your reply. Oh and one thing that one doctor said it definetly cannot be GBS because of the hearing but from speaking to others who have it thats not true sometimes loss of hearing is one of the symptoms
Colleen;)
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October 10, 2006 at 12:13 pm
I agree with Judy Z NOTHING is normal about GBS. They told me that my son couldn’t have it because he had headaches but from this sight i have realized that alot of kids get headaches. My son was finally diagnosed with GBS & headaches. The best advice I can give you is keep fighting. You sound like that is what your doing but keep making noise. The squeeky wheel gets oiled. If you get a chance read my post. (seven year old with GBS) we had a similar situation, but not nearly as prolonged as yours. My next best piece of advice is use this website. I have learned more from the people here than all of the doctors put together. Also, i agree with Judy the neurontin has helped my son tremendously. I hope things work out for you and your son. Good luck
Stacy
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October 10, 2006 at 3:44 pm
Thats interesting about the neurontin because he was prescribed it in the beginning and I was told that it was for pain and since he has no pain I have not been giving it to him and the doctors said that was fine. Does it actually heal nerves or what does it do?
Colleen
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October 10, 2006 at 6:24 pm
To be honest I’m not sure what it’s for. I think that it helps repair the nerve damage. I’m sure you know how it feels to be overwhelmed with information. I will get the prescription info and send you a message tomorrow. I know that it has helped but now we’re dealing with the side affects. It’s a big guessing game, what will work and what won’t. I wish i could tell you that miraculously one day your son will feel better. We have been going through this since feb. and every time you think it’s over something else happens. Has your son gotten depressed? We have been battling with it lately. I feel like I can’t help him and he’s used to when he’s sick, mom makes it better.
I will keep you in my thoughts. Good luck to you and your familyStacy
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October 10, 2006 at 6:43 pm
I would not say my son is depressed but frustrated yes and we see it in his behavior. He is mad at the whole world. I guess we all are when things like this happen. Through all this we also lost my mom who he was very close to. But one day at a time and hopefully things will continue to improve. I would really appreciate you sending me more info on neurotin
Colleen
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October 10, 2006 at 9:21 pm
Neurontin is an anti-seizure med that has been found to “settle down” restless legs and was then found to be helpful with nerve pain. No one knows for sure why. Neurontin does not help to heal the nerves ~ that is something your body does.
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October 11, 2006 at 8:41 am
O.K. here is what his prescription says
This medicine is an anticonvulsant used to treat seiures associated with epilepsy. It may also be used in adults to treat nerve pain following herpes zoster or to treat other conditions as determined by your doctor.Possible side affects: tiredness, drowsiness, dizziness, tremor, back pain, dry mouth, constipation, increased appetite (tyler has all but lost his), or an upset stomach.
Tyler goes back to the neuro next week so I’ll ask her more about it and I’ll keep you posted. I noticed that you said you were waiting to get an appointment. Here is a tip for you that worked for me. I used to call the doctors office every morning at about 10:00, most people that are going to cancel will do it by then and sometimes you can sneak in that same day. I know it takes forever to get appoinments. Talk to you soon
Stacy
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October 11, 2006 at 11:06 am
Thank you for the neurotin advice. Does your son have a tremor? Mine does but he’s not on it right now. The appointment I am waiting for is in another city so can not do it on a last minute thing, but for appointments in our city I do that exactly. Good luck at the neuro appointment. We have one next week but she kind of gave up on us long time ago so I am surprised she asked to see us. Should be an interesting appointment. Maybe this time she will actually want to do more to find a diagnosis?????
Colleen
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October 11, 2006 at 8:18 pm
Please keep me posted. I have been thinking about you and your son. It’s amazing how the medical field works. Tylers hospital stay was $ 4,200.00 per night (luckily we have ins.) we stayed for 8 nights and for all that money you’d think they’d at least act like they care about my son. I can say the nurses we’re great but after being misdiagnosed 9 times and finally figuring out GBS, within 25 minutes had our discharge papers ready. The least they could have done was mention this website or the foundation. I have lost faith in his dr’s it seems like they say things to shut me up until the next appt.
Good luck
Stacy -
October 12, 2006 at 8:09 am
I guess we are lucking living in Alberta our medical is covered so we at least don’t have that worry. Doctors have d$##$$ me off as well its really bad when two doctors supposable on a team are arguing about the diagnosis in front of you and then both walk away giving me no answers or options. Like I said they said he would die within weeks and we sought alternative medicine which I know is why he is here today. I think that made them mad as well but my only concern is for my son not to please the doctors.
Colleen:D
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October 13, 2006 at 10:39 am
I can totally sypathize with you. We were at the University of Michigan (arguablly one of the best children’s hospitals in the country) and they came in after diagnosing tyler wrong 9 times and told Tyler that “he stumped the dr.s” now what kind of thing is that to say to a sick child. You can think it all you want but you don’t tell your patient to basically give up hope. They told us tyler probably wouldn’t play sports for at least a year and in May he played EVERY baseball game with his team. He has now played every football game. I think dr.s’ are taught to think that what the books say is what goes and they need to treat each child on an individual basis. Boy, how scary for you to be told your child won’t be around for much longer. Alot of parents would have said o.k. and made life great for the next 2 weeks , thank god you went after an alternative medicine. All I can say is keep fighting. We shouldn’t have to but unfortunately that’s the way it is.
Talk to you soon
Stacy
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