Falling a lot…Is this normal???
AnonymousSeptember 22, 2010 at 5:10 pm
Hi everyone….Hanna’s recovery seems to be going smoothly with the exception of her knee’s and hands still having some pain…we are working with her Ped. Neuro to get the right dose of Neurontin. But in the last week…maybe a week and a half…she seems to fall quite a bit. I know for sure it is at least once a day…some days she has fallen several times. She is telling me that she just lost her balance. I have seen her fall most of the time…and there is nothing that she is tripping on. It confused my husband and I because she seems to be getting better physically everyday. She walked out of the hospital on September 5th….her walking has been improving daily…she can even run…looks funny…but she can. I called the neurologist and asked him if it is a side effect of the Neurontin…he said he does not feel it is….and that maybe the GBS has hit a plateau…and that we might need to do another IVIG treatment. Has this happened to you and your GBS child? She said that the “pins & needles” are gone from her hands and feet…but could her falling so much mean that the GBS is back…or never really fully left her body? I thought that IVIG was not effective after the 2 weeks of the onset of GBS. Thanks for your help!
(Mom to Hanna…GBS at 6 years old…Dx’d Sept. 1st, 2010)
September 22, 2010 at 11:48 pm
I do not want to be negative, just relay our experience. gbs dx, followed by ivig, only to relapse 4 months later. IVIG again, cidp dx. Make sure you have a baseline ncv/emg so that if need be, you can do another to compare and have a diagnostic tool that verifys the dx. Tripping is how we started, then the pain, pins and needles etc. It is possible that the vig helped stop the process and the inflamation calmed down, but the tripping again seems like it is indicative of a new demylienation starting again, time will tell, if it gets worse. Something to consider, the neurotnin may be doing its job, relieving the nerve pain and pins and needles. The pain and pins and needles may actually still be there, just masked. Please understand that I do not want to sound negative, just realistic, there is no harm in investigating the possibilities to stop damage, actually, it would be wonderful news to be proved it is gbs. My son was 9 when this started, he is now 13. We get treatments every 2 weeks, a maintanence dose. I am not sure it should be a maint. dose, we are observing and always changing and finessing.
It is par for the course. On a brighter note, there are good days of runnning and playing with his friends, we take those and run with them! No pun intended. The bad days happen, but we try to find some positive outcome out of them. We are becomming stronger in other ways, stronger as individuals and in our hearts. Once you firm things up, things will get easier to manage. Good luck to you and your family.
AnonymousSeptember 23, 2010 at 10:08 am
You are still so early in your recovery, it could just be that the nerves are healing and relearning. It is a very slow process. Just wanted to throw something out there. Did they check for a tethered cord? My son had this and it can cause balance and leg issues, but it also affects bladder,etc. It is extra tissue at the base of the spinal cord. They can detect this from an MRI. I assume that she has already been worked up for this, but just wanted to throw this out there. My son had surgery at 10 months, but he does trip quite a bit. He does have big feet for his age so I think that contributes a bit! 🙂 Good luck and I pray for you and Hanna and that she gets better every day. No child should ever have to deal with GBS and I have seen a few on here lately which saddens me. But children are SUPER resilient and she will get through this!!
AnonymousSeptember 23, 2010 at 10:38 am
Thanks Ladies…I appreciate both of your input. Since Hanna’s dx…I have become somewhat of a hypersensitive mom…and freakout about every symptom that Hanna gets….I know I can’t go through life being this way….and regardless of me being this way or not…the GBS will do what it has to do. I have spent sooooo many sleepless nights doing research on GBS and CIDP….I am sure…like everyone in this forum…that I could teach med students & uneducated doctors about it. We do have a baseline EMG…I wonder if I should suggest or request another one to see where we are at? She did get an MRI as well….not sure if they checked it for a tethered cord….I would assume they would have noticed something like that, right??? I am going to ask her Neuro on Monday if we should try reducing her neurontin to see if it is masking new symptoms….last night she woke up in the middle of the night in pain again…and she has not done that for 2 weeks….but again….I could be being hypersensitive. GBS really sucks! 🙁
September 23, 2010 at 11:33 am
Hypersensitivity regarding your daughters symptoms is exactly what is needed to be on top of things. i know exactly what you are talking about. To me, I think aware is really the word, you are aware of every little change. You have to be. If you ever wanted to talk, I will pm you my #.
AnonymousSeptember 23, 2010 at 2:54 pm
Jenn, Dawn is right. You need to be “aware” and don’t feel bad about being hypersensitive. You are tuned in to your child and you know when something is wrong. You have to be an advocate for her, which it sounds like you are. I am in your boat and Dawn’s boat because my son has medical issues that I have been dealing with for over 4 years.
I am going to give one example of something that we experienced that has made me hypervigilant. My son was in the hospital prepping for surgery, and he was screaming bloody murder. I kept telling the nurse that something was wrong and she wasn’t really listening to me. I kept insisting and they sent someone else to check and his IV was not in the vein, it was going into the foot and causing pain. They took it out and boom, he stopped crying. Every nurse that came in after that, I asked her to check the IV. Live and learn and always ask questions……
AnonymousSeptember 23, 2010 at 3:20 pm
It is sooo reassuring being able to talk “well, write” to people who understand what I am going through. I agree about being our kids advocates…while we were in the hospital trying to get a firm dx….they had done 2 LP’s on Hanna and were not able to get fluid either time…My husband and I were the one’s who had to hold her down during each…she was awake for them and only had morphine. When they said they were going to have to do another one….we insisted that it be the best person in the hospital to insure that she would not have to go through this again…we also requested that she be sedated for this one…as the trauma of the other two had completely freaked her out. The Chief of Anesthesiology is the one who preformed the 3rd LP…and he got the fluid in less then 5 minutes. Also…same thing happened with Hanna’s IV…but she was not going to surgery…she kept complaining of her hand hurting where the IV was…I would tell the nurse and she would just dismiss it….finally…I took off the IV guard and her hand was soooo puffy….I pushed the nurse button and she came in and looked and said that her IV had blown and the fluid was going into her hand….this was 13 hours after she had been complaining and I had been telling them about it.
September 23, 2010 at 8:39 pm
Hi Jenn – I’m sorry to hear you’re experiencing night wakings again (as well as everything else you’ve gone thru). That is the worst & hopefully it was an isolated incident (GBS does suck!).
As far as falling – in hindsight we realized that my son taking an uncharacteristic spill at the playground (he fell flat on his face, unusual for him as he’s usually very cautious) & then similarly in our kitchen the next day (where there was nothing for him to trip on) were early signs of GBS. But because he hadn’t been sleeping, we just thought he was starting to stumble due to being so exhausted.
It’s good that your daughter is able to communicate to you how she’s feeling. Good luck & hang in there –
D., mom to 19 m.o. ds dx w/gbs 8/30/10
AnonymousSeptember 24, 2010 at 1:12 am
Thanks Dee…I too am soooo sorry that you are having to go through this with your DS at 19 months…I can’t even imagine the communication barrier you are having. Hanna’s descriptions of her pains and symptoms have made it so much easier for us to help her explain them to the neuro….her “pins & needles” were “bumps under her fingers & toes” and her loss of motor skills were her “hands and feet forgetting how to write and walk”.
Good luck with your DS’s recovery!
AnonymousSeptember 24, 2010 at 2:39 pm
Jenn, it sounds like you are learning too how to deal with the docs with your LP situation. I can’t believe you had an IV situation too! ugh that makes me mad. I remember having issues one time with drawing my son’s blood, like numerous pokes, and I finally insisted someone else come in and later complained to the manager. And this is all at one of the best children’s hospitals. Hang in there….and I pray for your daughter’s speedy recovery!!
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