Is GBS Recovery suppose to be this painful??
AnonymousSeptember 15, 2010 at 3:12 pm
My daughter is 6 years old and was diagnosed with GBS on Sept. 1st, 2010. During her 7 day stay in the hospital, she had 3 LP’s (the first 2, they were unsuccessful in getting fluid, she was also awake and only had morphine for those 2), she had an MRI, EMG, and numerous blood tests. After the firm Dx…they gave her 2 IVIG treatments…and 10 hours after the 2nd treatment, she was walking again…very slowly, but up and moving. Her motor skills continued to improve but she continued to complain about pain she was having in her back, arms and legs. The pain seemed to be so severe that it would wake her up every hour…this went on for about a week….now she is sleeping through the night….but continues to complain throughout the day of the pain she is having. Earlier this week we had our first follow-up appointment with the pediatric neurologist….I had called him 4 times (4 different days) and left messages regarding Hanna’s pain…he called me back on day 5 and prescribed her some Neurontin. It does not seem to be doing anything for her pain…only making her very moody and on edge. The Neurologist does not think the pain she is having is related to the GBS…he thinks it is psychological….and that the pain she is having is from the trauma of being in the hospital. I strongly disagree…I am with her 24/7….I see first hand the pain she is going through….I do think that it is caused by the GBS….has anyone else experienced their child being in so much pain? I am so frustrated that I can’t seem to find any answers and I feel like the ped. neurologist does not want to assist in the recovery of my daughter. Any suggestions are welcome…this is such a hard disease to deal with.
AnonymousSeptember 16, 2010 at 10:05 am
Your post is making me angry….it is not psychological, it is physical. I really wish there was more understanding of GBS on the part of the doctors, but because it is uncommon, you are lucky to find a doctor who even recognizes it and let alone treats it. As a mom, your gut instincts are right. You may want to get a second opinion or contact the Foundation for recommendations for pediatric neurologists in your area that specialize in this. Pain is a sign that something is wrong and not normal. This is a very scary situation, where you lose complete control of your body and don’t understand it. It is frightening for adults, so I cannot even imagine for a 6 year old. Please take her pain complaints seriously as you are doing and seek a second opinion. But also recognize that it can take a long time to recover from GBS, and things will get better over time. Good luck!
AnonymousSeptember 16, 2010 at 12:18 pm
I recall being in horrific pain shortly after my nerves started regenerating (well, at least that’s what the doctors said). The only thing that helped relieve the pain was Elavil. I haven’t tried Neurontin but I believe it may be used for the same reason; to alleviate nerve pain.
I pray the Neurontin will eventually kick in as it’s difficult enough dealing with GBS and the subsequent issues as an adult; it’s much worse when you’re a child.
AnonymousSeptember 16, 2010 at 6:03 pm
Thanks ladies…put in a request for a new Ped. Neuro….would really like to find one in my area who has a better understanding of GBS. When I asked the doc of nerve regeneration hurt…he said no….I then asked him is he had ever had nerve regeneration and he smirked at me and said no. We are on day five of the Neurontin and today was a good day for her. She said the pain is still there, but she does not need to cry from it….I am assuming that the meds are starting to help manage the pain. I am still very concerned that her knees are so painful to her….maybe I should get her an appointment with an orthopedic doc?? Again…thanks for the support…it truly makes this disease bearable knowing there are other’s to talk to out there who have been through this. – Jenn (Mom to Hanna, 6 yrs old…GBS 9/2010)
AnonymousSeptember 16, 2010 at 8:51 pm
Oh, I am so sorry for your little girl! When I became ill no one really knew what to do with/for me. The pain was the most agonizing pain I have ever experienced – including child birth!! I would pray to die. I had been given a narcotic but I didn’t know about keeping the level in my blood “stable”. I suffered terribly. Years later when I was given neurontin I thought it was a miracle drug. You have to be taking the right amount to make the difference (trial and error). The pain is NOT psycholgical:eek: I can’t imagine how difficult it would be with a child. I wish you both success in finding the optimal treatment for her. I wish I had more knowledge . . . check in with the Foundtion. hugs to both of you, Judi
AnonymousSeptember 17, 2010 at 7:54 am
When I asked the doc of nerve regeneration hurt…he said no….I then asked him is he had ever had nerve regeneration and he smirked at me and said no. [/QUOTE]
Wow……I’m glad you didn’t want to be brought up on assault charges. I can honestly say I would have been hard pressed not to slap the smirk off his face. 😡 I understand some doctors feel superior, etc., however anyone who decides to enter the field of pediatrics should realize parents will ask questions which is in the best interest of their children.
Please find another neuro as soon as possible. I don’t think it would hurt to check with an orthopedic doctor to cover all bases.
I hope little Hanna feels much better!!!
Darnit….now I feel like finding and keying that “docs” car. I kid, I kid….mostly.:o
AnonymousSeptember 19, 2010 at 10:33 pm
Unfortunately for your daughter, Neurontin can take a few days to a couple of weeks to start to show any effect. It is good that the pain is starting to decrease after five days. Give it another week. If the pain is well controlled, then the Neurontin works and she has about the right dose. If the pain is less, then the Neurontin probably works and it would be worthwhile to consider increasing the dose.
Godspeed in finding your daughter pain relief,
AnonymousNovember 23, 2011 at 2:12 pm
My daughter had GBS when she was 3 years old and the pain was beyond terrific! Beyond anything I think I could have handled. Strangley, many of the things that were known residuals of GBS were passed off as “not because of the GBS.” I understand your frustration. I have no idea what would be so wrong with docs admitting that GBS has residuals, but many neuros will not. I am glad you are on ths site and have asked the questions. The pain is very real and I agree it is very challenging to have a child with this syndrome. Maybe someone can recommend a doc in your area who knows GBS so your daughter can get some good care. Also, neurontin did help my daughter’s pain but you are right about the mood swings. I hope your daughter heals quickly!
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