Hospital stay: Ryder smooching his nose in the crib against the glass:) This provided a good half hour of entertainment (for me at least:)
Poor guy could hardly balance with all that on his head! He was a trooper though. He had about 5 feet around his crib that he could play, but always had to face the camera. Explain that to a 1 year old!!! (and for 34 hrs straight w/light always on!)
Where to begin?? I'm going to try to make this short and to the point since a lot has happened since the last blog.
EEG/ Hospital stay: MISERABLE!!!! Wow was that no fun. Ryder had tons of wires connected to his head wrapped in a big thing of gauze. He had about 5 feet around the outside of his crib to move. The lights had to stay on day and night so the video could monitor him. He slept a total of 3 hr. and 45 mins. all day and night (Usually he sleeps 17 hours a day). If you know me well--I am cranky without sleep!!!! Anyways they told me to push a button if he was having a blank gaze..even if I wasn't sure that's what it was. I pushed the button 6 times..really not thinking they were anything...but wanted to check (we were both exhausted!). I expected the doctor to come in to talk with me about 9am. The nurse had mentioned we would be discharged later that day. At first I thought they got everything they needed since we were supposed to stay 3 nights. I called our neurologist and asked them if Ryder could get his 2nd MRI since we were already at the hospital instead of waiting 2 more weeks. That was luckily approved. When the doctor did come in he asked if those were the gazes I saw at home. I said yes, but they were a lot shorter than I have seen and just pushed the button not knowing if they were or not. He said those weren't seizures, which was great news! However, I am positive that what I witnessed at home were absent seizures and his first EEG showed signs of epileptic activity. I talked to 3 different doctors about lasting affects of absent seizures and all 3 told me there wasn't lasting damage that was being done. For the last couple weeks I have only noticed about 2 a day. I felt confident with the decision to go home instead of push the issue to stay and have him monitored (plus I was exhausted and wanted to get home!) I figure if these gazes don't have a lasting effect than I'd rather have him have a few a day than have him on medications to control them (with the extra side effects they cause). As of now we are just monitoring him for these. They seem to be getting fewer and not happening daily as before. He still sleeps way to much though.
2nd MRI: This MRI was a lot quicker than the 1st one. He was done in an hour and only cranky for about 30mins. after waking up from the anaesthesia. The 1st MRI took almost 3 hours...makes me wonder if anything went wrong during the 1st one??? I will be requesting those records from the 1st MRI. Before we left I asked when I'd hear results and asked the hospital for all the records, notes and CD of the films. I was told that my doctor would call me the following day, that inpatient results get in quickly compared to out patient like his 1st MRI. I really don't know why I even ask with the history of my neuro anyway! I didn't expect a call and didn't receive one either. I finally called about 10 days after we left the hospital. I had an appointment scheduled for Nov. 15th, but asked if I could move it up sooner since his MRI was already done. I got that appointment moved up to Nov.9th... another story;) I really cared less about meeting with the neuro again anyways since the MRI results and all records were sent to me with in the week! After reading through them it was very contradicting--but what stood out was that there hadn't been any changes!!! That means this form of Luekodystrophy will be a slower progressing form. However----weird part of this MRI report stated their is NO evidence of demyelination seen and his myelination is appropriate for his age...but then it reports their is bilateral periatrial white matter abnormality (which is myelin). It stated that it was stable, suggestive of mild chronic white matter damage (soooo don't these statements contradict themselves??????hmmmm- made me question this radiologist reporting on the MRI?) Overall--all I cared about was that there has been NO CHANGE:)
Insurance/testing road blocks:
Dr. Kirk Aleck -Genetic Specialist (whom I really liked) requested 3 different tests, two being genetic. I called 2 weeks after that appointment to find out what was going on with the tests. The nurse told me that my insurance company declined paying for both of the genetic tests, they only pay prenatal genetic testing. She sent me the request for getting his liver enzyme tested again (it was previously high). I called my nurse case manager through the insurance company to see if there was anything we could do. She felt there was, that we can explain that its a medical emergency and that it sounded like the office didn't contact the right people about getting the testing approval. I gave her the number to call to speak directly with Dr. Alecks office. The next day I got a call back from Dr. Aleck's office and she confirmed again Ryder's insurance will not cover these test. These test were to rule out PMD (another form of luekodystrophy) and have a chromosome micro analysis done to look for small deletions or duplications of his chromosomes.
These 2 tests run a few thousand dollars each. I may be having a fundraiser for the PMD test in the next several months because I feel this is the closes diagnosis that fit his symptoms. From the insurance company's view- if PMD is diagnosed there is still no cure so it wouldn't help at all. My point of view---Leukodystrophy is rare and not much is known about it. If we can understand it, it's many forms, and start conducting research--it's a HUGE step for kids like Ryder! When I began working with kids who had autism (12 yrs ago) 1 in 10,000 kids were diagnosed at the time. Not much was known or understood about it! Today 1 in 110 kids are diagnosed and those with autism are gaining acceptance, research, help/services and understanding--THAT is what I wish for--but hope it won't be 10 years down the road;)
In the meantime....While waiting for results and doctors appointments (during nap time) I did my research. I joined the ULF (united luekodystrophy foundation) and Hunter's Hope (Also read Hunter's story--novel by Jim and Jill Kelly). I requested Barrow's journals and magazines as well. I went through the 34 forms of luekodystrophy and familiarized myself with each one (from medical journals--NOT Wikipedia;) I calculated percentages of each form in which I felt Ryder may have. I came up with 3 scoring higher then a 70% chance based on symptoms. My Mom also bought me 4 DVD's through ULF on seminars on undiagnosed luekodystrophies--INTERESTING!!!! I have been watching short versions of them. There is over 8 hrs of info directed towards doctors--so I need short increments to process and look into this stuff;) --can you tell I'm a teacher at heart and still love to learn;)
Appointment w/ the neuro:
UUUGGG 1st of all! I went into this appointment not expecting anything and really thought this guy was an idiot in the 1st place(still do!) Les came with me:) Starting off, the medical assistant (the ONLY one in the office I like) told me they never received Ryder's MRI films, even though she requested them 3 weeks ago (as did I- to get them sent to neuro). She said there was a lady that could access PCH (phoenix's children's hospital) computer so that he could see the reults. 10 mins. later neuro came in (blah). He did the whole caring--how's he doing speal at first. Then said the 2nd MRI came in with a totally different opinion then the 1st radiologist. This MRI stated slight white matter damage. He said this was great news!!! He said that means that the brain matter was damaged at birth--but it will not progress. Ryder will just have some learning difficulties and it won't affect him much more. I did have a minute of YAY--this WAS all NOTHING!- but I know my baby and I am being realistic. Les saw the look on my face when the doctor said this. Les asked "What are you thinking Baby?" I told them as much as I wanted to believe this to be true--what about the nystagmus, developmental delay, ataxia, not gaining weight, sleep patterns---it all did fit or feel right to me (BELIEVE ME--I WISH IT DID!!!) The neuro then paused awhile and admitted that there wasn't any record of birth trauma and that didn't seem to fit. I asked him to see the MRI pictures (since I've studied how to read them..not a pro--but wanted to see!). Guess what--the neuro hadn't seen the images until about 5 minutes before the visit with us--when the nurse pulled them up!!!! He couldn't even see a full screen of any of the images---I DON'T LIKE HIM!!!!! After him trying to get out of this situation, I opened my notebook of records and research of what I felt it could be.... He agreed with me and said "I though it could be that..I considered that"---blah blah blah!!!) He examined Ryder and stated that he definitely had ataxia. He was unbalanced and over corrects himself. The nystagmus, ataxia, sleep patterns, weight and development are concerning. I told him I'd like someone else at least to review Ryder's 2nd MRI--this was all based on 1 radiologist's opinion--who didn't even know Ryder or the history!! He, himself didn't look at the results!!!!He wants us to schedule and appointment in another 6 months and get a 3rd MRI when Ryder is 2. So Les and I shook his hand and left (walking right past the desk to schedule another appointment!) I have an appointment on Feb.23 with the director of pediatric neurologist at barrows! I'm DONE with that neuro!!!
For those of you that watch Grey's Anatomy--I feel like the parent's on the last episode that the doctors look down upon. They think I'm some dumb parent researching Wikipedia and the Internet to diagnose my kid. How funny is it that I was the one who told the neuro what fits Ryder's symptoms--he didn't tell us--but he agreed!!! Leukodystrophy is so new to everyone and not much is known about it. He spends his time with a lot of neuro patients with many different conditions. I spend my time understanding MY baby and his body and symptoms!!!
I really am not looking to tell doctors how to do their job, but I'm looking to be part of a team to help Ryder. I'm looking for doctors that care about Ryder and helping his whole family by educating, supporting and listening to us! So far God, So many family and friends, Dr. Jones (pediatrician), and Dr. Aleck (Genetic Specialist) are on TEAM RYDER :) I will surround him with all the positive support and love possible.
Presently...and coming up:
Ryder has been cranky lately and very uncooperative with "play therapy." He did cut his 1st molar--hoping that is the reason. However, he is still picky as ever while eating, but has been drinking from a bottle better. He has been unwilling to stand himself, cruise around the couch or even hold a bottle himself lately!!!! MR. LAZY!!!! As hard as it is seeing my own baby struggle, I know I have to push for this independence and try to motivate him. I haven't seen the absent seizures in a few days, but I now observe a slight twitch/shake mainly in his upper body that has been worrying me. He still is as cute as can be though!!! I really LOVE being at home with him and Noah!!!! I could care less if we are poor!!! We have a rich life of love, family, friends and support!!!
Liver Function Test--ASAP
Dr. Bodensteiner-Feb.23
PT & Speech-feeding therapy as soon as we can schedule it (it's been on hold due to paperwork & finances)
