Reply To: Possible GBS dx…5 yr old…Please help me

May 24, 2012 at 12:01 am

I didn’t remember a few things. If you do get a spinal, make sure he lies on his back for 24 hours without getting up. It will help with the headaches and keep him hydrated. If you do get ancv/emg, ask for the report right away so that if you have to have another one you can give them the old report so that the same measurements are taken and the same nerves are used. Apples to apples. If they give him anything for pain if he does get headaches codeine or whatever, make sure to ask for a laxative right away so he does not get constipated. If it is gbs or cidp and they do ivig, make sure to ask for the slowest possible flo rate. They should do this anyway, it is a formula that goes by weight, but sometimes they try to push it and that is what increases likelihood of headaches after. Is he diabetic? If so make sure they use an ivig brand without sugars as a stabilizer. I brought tons of movies, our own pillows, xbox, snacks. We would go down to the cafetria in the wheel chair for lunch. (we were there 10 days the first time, so it was BORING!!!) I brought a twin airmattress and slept on the floor. If you guys do ivig, he will probably be premedicated to help with sickness. Zofran can help with the nausea, some do well with it, it gave us a worse headache. The will probably give tylenol and benydryl. Don’t let them iv push the benadryl, it burn through the veins especially for little kids, make sure it is oral benadryl. When they access for infussion, make sure they use lidocaine spray or cream where they think they will stick him, it helps to not feel the stick. Maybe if he does get a spinal, they could give him a little laughing gas and access him while he is out for the spinal. Make sure they put it in a place that is not near a bending area (inside elbow) If the arm is not straight, the alarm goes off every two seconds on the pump and more than likely the vein will blow and they will have to find another before the entire infussion is over.

Hopefully we are jumping the gun and maybe it will just be mono, but better to know all the mistakes we made so you are better prepared than we were. We will say a prayer for you guys!