30August2004
Today we went to the Pulmonologist to talk about the sleep study...and guess what, he feels that AJ needs one. Go figure. That was all that appt. was for. They are supose to call me within a week to schedule the test and then it could be anywhere from 1-3 more weeks to actually have the test, then 2-3 weeks for the result. That is crazy. The Dr did say that he was going to have electrodes on his head to see if he was having any seizures in his sleep, a pulseOX on his fingure to measure oxygen, heart moniter, breath waves moniter and something in his nose...have no idea how you are supose to sleep with all that, but they told me that he is supose to have no nap, wake up early the morning before and I am supose to give him his clonidine so the falling asleep should be easy, the staying asleep will be the problem. I stopped by Opthalmology today to find out what the problem was with scheduling AJ's appt to see the pressures in his eyes. They said that Dr. Dias' office had to call in person to schedule the appt. We called over to them, it was a big hastle, but things finally got worked out and Opthamology finally got what they needed. Turns out that Dr Dias ordered it as an urgent appt so he was supose to have been seen already but the Dr he is to see won;t be in till the afternoon so the nurse is going to call today or tomarrow with when the Dr is able to fit AJ in to test his pressures.
An overview diagnosis to present
-Age 1 1/2 to present AJ complains increasingly of R leg pain
-Nov 2003 and March 2004 AJ has seizures
-Referred to Dr. Barr Pediatric Neurologist NMC Portsmouth
-Seizures normal at that time but concerned about sleeping and leg pain
-prescribed Clonidine to put him into a deep sleep and began testing for leg pain
-As a last resort before his retirement and my exiting the Navy he suggested an MRI of his brain
----20AUGUST 2004 AJ diagnosed with Arnold-Chiari Malformation with Hydrocephalis------
I was in shock, Dr Barr took the time to show me the MRI pictures so that I could see for myself and he scheduled AJ ASAP for the neurosurgeon. Dr Barr stated that AJ could die in his sleep because of his severity and the pressure on his brain. When we got to the car AJ asked me why I was crying, I told him that the Dr had just told me that his brain was hurt...AJ said "awh thats too bad..take me to the store I'll buy you a bunch of flowers" he made me laugh as always
-we saw the Neurosurgeon but as soon as she knew we were moving it was like we were a waste of time.
-Alesha Hamilton (my long time friend) got AJ an appt at Hershey Medical Center with the best Pediatric Neurosurgeon in the area Dr Dias for 30August2004.
-AJ's symptoms got worse and I took him to a pediatrician who called Dr Dias and he wanted to see AJ ASAP
-23August2004 we went to see Dr Dias. Very disappointing, he stated that he didn't believe that AJ was having headaches and that he was not in any pain because that did not sound right for his age. He did order a sleep study and for pressures of his eyes to be done, but he did not feel a need to find if AJ has a syrinx in his back causing the leg pain. I did not feel confortable with AJ being in the hands of this "expert"
-25August I finally listened to the support group and found there is a Chiari specialist group in NY. I called The Chiari Instatute and they were very understanding and listened to what I had to say. They explained things to me and was sure that I understood. They told me that if I even was considering bringing AJ there that I should atleast make the appt because they were very full and if things later went wrong with Dr Dias they would hate for AJ to have to wait longer than he needed. SO I did. AJ and I are to be in NY for an appt on the 11th of OCT. It would have been NOV but I accepted to spend the weekend in NY. It will be more expensive, but AJ is worth it and I feel he is getting worse so I don't want to wait. Here is how it will work:
-They will send me a welcome packet in the mail with directions, information about them, hotel information, instructions, and a 4 page questionaire about AJ.
-I fill out the questionaire and mail it back ASAP
-a nurse calls to tell us when to be there on the 8th for testing and mails me prescriptions for the sedation tests that he will need before we go up there.
-Pre tests need completed and we need to be in NY the night of the 7th for testing on the 8th.
-we have the weekend to ourselves
-monday morning we need to be at TCI at 1100 to have a 2 hour meeting with the Neurologist
-In the afternoon we meet with the Neurosurgeon to findout if AJ qualifies for surgery, what they would do and how emergent his case is. -Then a decision would be made and if needed a surgery date would be set.
I feel that this is where AJ needs to be. This will be expensive and I will end up in a lot of debt, but I feel AJ is worth every penny.
-AJ has his pulmonologist appt 30AUgust2004 at 1100 to talk about doing the sleep study.
Current symptoms: breathing difficulties at night, unable to stay asleep even on Clonidine, falling, headaches; AJ states that he feels he was hit in the back of the neck with a door knob, bilateral leg pain; while standing, walking long or walking up stairs AJ states that his legs "are breaking apart", lower back pain, vomiting every couple of days, and just general pain. He has also become very frustrated and when he is in pain wants everyone to "leave me alone"
