What a nightmare for your DD and you, too Cherie. Sure hope her back straightens out soon; sounds so painful. Keeping your DD and you in my prayers.

Keeping You and DD in my thoughts and prayers, Dear Cherie..

Dear Cherie--I just saw your thread. What a horrible experience for your family. I hope that neurologist follows up and really finds out what's wrong with your daughter. Hang in there and very best of luck!

Nancy T.

Hi Cherie,

Haven't seen you around the forum in a little while and hope everything is OK!

How is your daughter doing now? And yourself? I really hope that you are both OK and that your daughter is feeling better and that you have got some much-needed answers by now!

Take care of yourself and please know that if you ever need anything, I am here for you - I KNOW how hard and scary it is dealing with a illness at a young age so I am here for you both!

You're in my thoughts and prayers. Sending many gentle hugs your way!

cherie,

how are you guys doing today? improvements i hope.

Jim had back pain for days after his last two LP's. As a matter of fact he could feel the pain for at least a month. For him it may have been a sensitivity thing because he had neurogenic pain and if you just ran your finger down any area of his body he would tell you it hurt.

Still praying for her Cherie.

Thank you for your support, everyone.

I ended up taking a bit of a break about stressing on all of this. It has really been a bad month trying to keep up with everything that was happening with her, and it has caused me some numbness and eye problems to contend with too.

I can't remember my last update, and am still too tired to look . . . so I apologize if I repeat myself.

I called Children’s on Monday, and they didn’t know what to make of it. Apparently they NEVER run into problems like this, so the nurse didn’t know what the next course of action would be. She was tracking down the neurologist on call, because the pediatrician neurologist who’s been dealing with my daughter had left on vacation. By Monday afternoon though, she sat up for the first time. She was still on heavy-duty meds every 3 hrs, but she was making steps in the right direction. We decided to see how she would do on Tuesday ...

Tuesday was slightly better than Monday, and by Tuesday night, she was able to eat dinner with us, etc. She was still on meds, but we managed to reduce them to every 4 or 5 hrs. She had gotten cabin fever quite bad by that point, and wanted to try to go to school the next day. I agreed to at least let her give it a try .... IF she could get out of bed in the morning.

She went to school on Wed, and made it through the day. She still needed Tylenol 3 alternated with Advil (back to every 4 hours again) , and she was exhausted when she got home, but she made it.

She went to school again today, and it was the first time she has woken up since last Friday without crying out for meds before saying “good morning”. She lasted 40 min before she asked, had some pain relief @ 8:30, again @ 1:30, and it’s about 7:30 now and she hasn’t asked for more. That’s after spending the whole day sitting/standing, so that’s HUGE progress.

They are on Spring break starting Friday, for two weeks, so she will have lots of catch-up on homework, etc. Thankfully she gets this break though . . .

So, the end result of the testing, at least thus far, is that she has nothing wrong with her. She is still numb, with hyper-sensitive skin, but the vertigo let up mid-last week (just prior to the LP). There are still some LP results that are outstanding, but the initial feedback is she doesn’t have any inflammatory process going on.

The pediatrician neuro was really excited to tell me that she “doesn’t have MS”, but in all honesty, I didn’t expect to hear otherwise and I told the neuro that. She was a bit surprised by my response, but I explained that I am aware that a MS dx often takes time (dissemination in time and space, etc.). She said, “Well the only objective finding was nystgamus”, and I said “that’s more objective finding than they had for me when I was paralyzed from the chest down in 1991”.

For now, I guess we are to approach this as my daughter has some psychological issues to work through ... so I tried to queue up some counseling with “mental health” to make sure she gets all the support we might be able to offer her. After a 4 page questionnaire, they determined that she will go on a 6 – 8 month waiting list as she doesn’t seem to have any “issues” that require immediate resolution.

We have an appointment to go over all the results in mid-April, and in the meantime hopefully the rest of the back pain, numbness, etc. will let up. The improvements are slow, but they are still heading in the right direction . . . so unless things stall or change, we’ll keep going along this track.

Thanks again for your input and kind thoughts.

Cherie

13 years old and already slaying dragons and baffling doctors. I am so sorry your family is going through this. You have faced my biggest fear. That is the one thing that I am absolutely terrified of, that my daughter might inherit this from me. I cannot even begin to imagine what you are going through, but I am glad her test have come back negative. And I am so glad to hear she is up and moving again. that had to be a horrible and petrifying experience. Mine was and I was almost 30. She is a trooper like her mom.

Thanks for the update, Cherie. I was beginning to get worried about you! It's always more stressful when our children are involved. If you're like me......dish out what you want to me but leave my kids alone!! I'm glad, though, that they didn't find anything alarming. It's still puzzling, though, not knowing what is exactly causing these sx. You're both still in my prayers.

Thanks for the update...I have checked every day looking for an update..you, your family and especially your daughter have been in my prayers..