Second opinion desperately needed

[Michelle_Kivett]

My 15 yr old son had been recently diagnosed and treated fro Gillian Barre Syndrome. When he was admitted to the hospital, his only symptom was complete facial paralysis. Let me go back to the beginning. Prior to this he had experienced sudden pain in the back of his upper legs and upper arms simultaneously. he couldn't extend his legs without severe pain and he had to walk on the tips of his toes. this lasted for about a week or so. As this pain started to subside, he developed the paralysis. When he was first experiencing the pain in his arms and legs, we took him to the hospital and they diagnosed him with arthralgia. So his diagnosis was actually a symptom . weird. nothing helped the pain so we took him back to our family doctor. he diagnosed him with Meningismus. Still nothing helped the pain, then as the pain began to subside, his facial gradually became paralyzed. we took him back to our family doctor who then referred us to a pediatric neurologist. he sent us immediately to the hospital where my son was admitted. they did  a cat scan and an MRI. all of these tests showed nothing. the lumbar puncture fluid was clear but slightly elevated white cells. His blood work showed elevated monocytes. An emg was performed on his face and was conclusive with his paralysis. he was then given the diagnosis of Gillian barre syndrome. he was treated with two treatments of IVIG and sent home the day following. During the first day of his 5 day stay on the hospital he suddenly developed severe pain in his toes in both feet at the same time. it became so severe at one point that they had to give him morphine. Then Tylenol 3 after that. when he was discharged he was still experiencing pain in his toes. It has been more than a month and his pain is still the same, not worse or better, just the same. we went back to the neurologist a couple of weeks ago and he told me to give him folic acid and vitamin D. Still given no reason for pain. My son is having trouble concentrating and sleeping. I don't know what else to do. I don't know how to give him hope that this may ever go away. Someone please help.

[jemma116]

Care needs to be taken with Gabapentin and people with some types of illnesses and conditions should not take it.

It should only be used if prescribed by the doctor.  The doctor will know the history of the patient and will know which medications are already being used and whether this would interact adversely.  

Personally I have not used this drug, but thanks for your input.  I fall into the category of those people who should not take this drug.

Best wishes.

[Pantx]

Have y'all tried gabapentin for nerve pain?

[jemma116]

As you may already be aware that there is no cure for Gillian Barre Syndrome and that it is an autoimmune disorder.  

Unfortunately, the reason for your son's painful toes may be due to nerve damage.  

The nerves heal very slowly, but may not completely heal back to normal.
The vitamin that is helpful for nerves is the vitamin B complex and B12.

If your son is still having this problem despite his IVIG treatment, make an appointment to take him back to the doctor. Request  a blood test be taken to check his Vitamin D and B levels and for diabetes and anaemia and any other blood test that the doctor may think is necessary.

Make sure that he drinks plenty of fluids so he does not get dehydrated.

Sometimes, the doctor can prescribe an antidepressant for nerve damage pain.  The particular medicine that is prescribed for nerve pain is Amitriptyline, and your doctor will know whether this would be suitable for your son.

Best wishes.