Katelyn has GBS, I need help
AnonymousFebruary 13, 2007 at 8:12 pm
Hello My name is Tammy. I am a friend of Mike the band teacher for New Orleans. I am going around in circles with Katelyn’s doctors (Katelyn is 6). He doctor is on vacation for 2 weeks and she has an appointment to take some kind of test on Friday, February 23. I had to call the office again and tell them that she is not having headaches and they upped her medicine. She now takes 100 mg in the morning, 50 mg when she gets home from school and 100 mg at night, the medicine is Neuroutin I have no idea what to do. I have giving my child so much of the medicine. They have not said that she has GBS, but they are 99% sure, that is what she has. She has no flex in her legs, feet, arms nor her hands. She is now getting headaches, her lower back hurts at times, she runs into walls, she is falls at least 10 – 15 times a day, and she lost 5 pounds in 6 days. I do think that I have something to worry about, but the doctors seem to be pushing me to the side. Can I please get some help.
AnonymousFebruary 13, 2007 at 10:44 pm
“Attack” time for GBS is 1 to 4 weeks. That means that the sheath around her nerves, and possibly her nerves are being or could be attacked, for up to 4 weeks. If this is GBS, then a spinal tap really should be done to check if she has high protein, but sometimes this does come back as a false negative, which does not mean that she doesnt have GBS. The usual treatment to try and stop the attack on the nerves, is IVIg or plasmapharesis. This is done, as I said, to try and stop further attack, and possibly stop further damage to her nerves. Therefore this treatment is essential within this time period. I hope I explained it reasonably well.. 😮
I think that you should try go to the ER as has been suggested, if that is possible. This will hopefully give you peace of mind. This is so hard to do, specially when you seem to be getting the run around by people who feel that you dont know as much as they do. Fight, fight and fight some more, you do have a right to know what is going on with your daughter. My thoughts and prayers are with you. Please let us know what happens, we want to help you through this tough time.
AnonymousFebruary 14, 2007 at 1:25 am
Is there a teaching hospital (ER) nearby? They may be more knowledgeable and prepared to diagnose and treat your daughter.
but the doctors seem to be pushing me to the side.
I understand this well – I once sat in the emergency room from 1:00 a.m. until 8:00 a.m. until the hospital administration office opened, refusing to go home.
After I discussed my concerns with the administrator, I never had a problem getting my daughter admitted again(no I didn’t use threats). I guess I’m trying to say, don’t let them intimidate you; your daughter has a right to medical care – not just sent home w/pain medicine until her appointment.
In the weeks ahead, remember to take care of yourself; this is the best way you will be able to help your daughter.
very best wishes to you and Katelyn,
AnonymousFebruary 14, 2007 at 3:53 am
Welcome Tammy 🙂 I am so sorry for the difficult medical situation you find yourself in. This is a scary time but you [I]must advocate [/I]for your precious little one. Don’t stop until you have the help you need. And you need it now! Every moment of delay could prolong her recovery.
If you don’t get the help you need, knock on administration doors, call your governor’s office, go to the press ~ whatever it takes! There is so much info available on this site. Print off what you think will help and take it with you. Most of us have found that we had to educate ourselves about this disease and the medical people around us.
You can do it!! Many hugs and prayers for you and Katelyn 🙂
AnonymousFebruary 14, 2007 at 6:43 am
Tammy there is a post somewhere that Mike asked for help for you here is the response from Kassandra
Early dx is VERY imprortant. If you would like to call me feel free to at any time, 239-945-2345.
AnonymousFebruary 14, 2007 at 10:10 am
My daughter is 5 years old. She was dx’d with GBS Miller-Fisher in Dec 05 at 4 years old. Her dx has been changed to CIDP since then.
As a mother of a child that has been through this, you MUST take her to the hospital ASAP. You MUST insist on a spinal tap IMMEDIATELY. They may also order brain & spinal MRI’s. Insist that they start IVIG. If you can’t get anywhere with the dr’s then you need to call the administrator at the hospital. Someone will eventually help you.
Then once all of this is over you need to find a new dr. I cannot fathom a dr giving a small child Neurontin for nerve pain without a dx first. In my opinion that is just POOR medicine.
I cannot express to you how important it is to get your daughter seen & tested immediately. I know it’s scary to think of going to the hospital & I know it’s not something that you really want to do but it HAS to be done for your daughter. Pack a bag with clothes, toys & movies and head out to the nearest hospital. Better yet, do you have a Children’s Hospital nearby? Or a big university hospital? Those would probably be even better.
AnonymousFebruary 14, 2007 at 11:25 am
Hi Tammy, Take your angelbabe to the nearest teaching hospital/university hospital, or childrens’ hospital. Stand up and be the voice for your sweetpea, because she can’t do that. she needs you and depends on you for that purpose. you can do it, you are MOM. don’t be intimidated by the drs, they are only human also. like others have said, print out information from these posts, take the information mike gave you and go. don’t leave the hospital until your babe is treated with ivig if gbs is the dx. plan on staying with her at all times, its better for her, you and her recovery. please keep us updated or go through mike and he can do that if he can. you and your Angel are in my thoughts and Prayers.
AnonymousFebruary 14, 2007 at 11:39 am
I sure am glad I didn’t give the wrong advice. I’m still a baby in the GBS world but I know where I would be if it was my kid but knowing the way GBS has been to me I can say that. I asked all 4 of my daughters last night the same question, and all 4 concoured. But then again they watched their dad in the CCU for 4 weeks hallucinating and on a vent. Then they watched me cry because I was scared I would never walk or even move again. Experiance VS. Panic I guess.
AnonymousFebruary 14, 2007 at 11:22 pm
I see you have posted another thread with the same question. I’m not sure you managed to see all the answers you got, it can be a little confusing trying to work out how the forum works. Im just bringing this up again so that you can see the responses. Kassandra is wonderful to speak to, she is sympathetic, caringm understanding and will give you the support you need, please give her a call and I know she will call you right back to save you money.
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