Tuesday, February 5, 2008

Reassurance


Our trip to the University of Virginia yesterday for a second opinion on Ashley’s seizures and brain tumors was well worth the trip.

Ashley and I had a relaxing morning at home. I kept her home from school because I knew she would need to be well rested for the trip, mainly because we would be home past her bedtime. She slept in until about 10am, and I relaxed by watching some of morning TV, shows I never get to see since I work during the week.

We left at 1:30pm and headed west to Charlottesville, Va. The map that the hospital had provided was excellent, and finding the office building was no problem. The first pleasant surprise I encountered was how warm and welcoming everyone was. As we pulled into the handicapped parking space, a crew of maintenance workers greeted us and told us to have a good day. After helping Ashley into her wheelchair and entering the building, the person at the receptionist desk smiled and greeted us also. The neurology office was just down the hall, well-marked, and easy to locate. Although the waiting room was crowded with children and their parents, the atmosphere was one of calm not anxiety. The person at the registration desk moved quickly to get us registered, and actually had many of the questions already answered (information provided by Ashley’s pediatrician). While I finished the registration process, Ashley was ushered into a small room by a woman with a big smile and crazy hair of many colors not found in nature. Ashley was deemed to still have a heartbeat and blood pressure about the time I finished with registration.

Because the waiting room was crowded, I thought we should settle in to a quiet corner and prepare to wait a while. But, we were immediately taken back to a doctor’s office. The doctor was very young, and as we found out later, was a resident. Her job was to record as much prior medical history as possible. She was a hit with Ashley because she had her identification badge on a necklace of beads of many shapes and colors, AND, she let Ashley hold it. Like everyone else we had met up until this point, this young resident was warm, friendly, relaxed and quite thorough. And again, that calm and relaxed atmosphere kept Ashley’s anxiety to a minimum.

After recording 12 years of medical history with the resident doctor, the actual neurologist we had been scheduled to see came to the room. He was an older gentleman with impeccable manners. He shook hands with Amy and me, and then sat directly in front of Ashley and shook hands with her. She was quite charmed by him and cooperated well as he poked and prodded. As with the rest of the staff, his calm, quiet manner relaxed us all, and I have never seen Ashley more comfortable in any other medical setting.

I explained that I was seeking a second opinion because I wasn’t comfortable with the approach of adding medicine upon medicine to try to control Ashley’s seizures. Although our neurosurgeon in Richmond had told us that he didn’t believe the seizures were a result of the three brain tumors Ashley has, I needed to hear that from someone else. I needed reassurance that we were indeed heading down an appropriate path, and if not, I needed suggestions on another path to pursue. The doctor agreed with me that a second opinion was warranted given that significant changes had been occurring in Ashley’s seizure patterns for the last year. And, he did agree with most of what our Richmond doctors were doing.

The UVA doctor agreed that surgery should not be done on the brain tumors at the moment. He agreed with the Richmond neurosurgeon that periodic MRI scans should be done to note any changes with the tumors. He also agreed that the Richmond neurologist had been following a medication course that he would have also followed. He reassured me that we should be able to reduce and/or discontinue some of the medications at some point, and that it was not unreasonable of me to expect that Ashley could get back to the seizure-free state that she had enjoyed for several years. He did, however, couch all that by saying Ashley has some rare conditions, something I already knew. And, that working with those rare conditions was often like being a detective. Things would be tried that wouldn’t work, and time might be needed to find the right solutions. So, up to that point, his statements of direction were following what Ashley’s Richmond doctors had been doing, and that was reassuring to me. But, he did introduce a couple of new items to consider.

Although Ashley has many behaviors that would indicate autism, she has never formally been given that diagnosis. The UVA doctor felt she should have that diagnosis. In addition to providing a more complete picture of her medical conditions, he felt it would help in her educational setting to obtain appropriate services. Of course, since we had not discussed educational services up to this point, he really had no way of knowing whether or not she was receiving appropriate services. In theory, and because autism is a disability that continues to receive a great deal of attention in schools, the press and the lawmaking bodies of our county, having a diagnosis of autism could potentially help Ashley access more services should she need them. But, as Amy (Ashley’s wonderful aide) so wisely pointed out, classifying Ashley primarily with a diagnosis of autism might actually have the opposite effect on educational services. The services which she and I have fought long and hard to obtain based on Ashley’s diagnosis of deafblindness might actually be at risk or at a minimum, lost in the mix of educational placement. So, this is a point that I will need to consider more thoroughly. I have always been an advocate of children receiving the services they need regardless of the labels imposed upon them, but I must ask myself if a label of autism would make receiving appropriate services less of a battle.

Secondly, the UVA neurologist asked a lot of questions about headaches. Did Ashley have headaches – did she exhibit behavior which might lead us to believe that? Based on his observations of her and the medical information I shared, he leaned strongly in the direction of thinking headaches are an issue for her. He told Amy and me what things to look for to confirm that thought, and if down the road we feel headaches are an issue, he suggested a medication that would help.

I left the appointment and Charlottesville feeling better about the approaches taken by our Richmond doctors, and have some hope for a less-medicated future for Ashley. As the UVA doctor said, Ashley is a medically-complicated child, but she is also vibrant and funny and charming and loving and smart. I believe the folks at UVA saw that yesterday, and I believe they have the same hope for her future that I do. Assuming that I haven’t totally offended our Richmond doctors by seeking a second opinion, I believe that the two teams of doctors combined with the excellent support Ashley has at home and at school can continue to help her realize her dreams. The one thing we have noticed during this time of increased seizures is that Ashley has not regressed on any of her previously-learned skills. In fact, she is making bigger gains now than she ever has, and that is, in my opinion, testament to the excellent support she has.

So, thank you Amy for all you do and especially for whispering in Ashley’s ear yesterday and making her laugh!

Thank you UVA doctors, nurses and other staff for making our experience yesterday one of the best we have ever had in a medical facility.

Thank you Richmond doctors, nurses and other medical staff for your continued attention to Ashley’s unique medical needs.

Thank you friends and families who continue to support me during these times of indecision, questioning, and worrying.


I think there is a reason that one of the first signs Ashley learned was the sign for ‘thank you’. She knew she would have many, many opportunities to use it!

6 comments:

Casdok said...

Oh i am so glad to hear you felt it went well. :)

MMC said...

A beautiful post, the kind that makes me smile. There's nothing like that feeling of having a neuro who sees your child as a real child and not just another patient. We are truly blessed to have a wonderful neuro and sometimes that can make all the difference.

If you don't mind me asking, how many meds is Ashely on? The Blue Jay has a seizure disorder too and we have been down a long way road of many, many meds. It always makes me nervous when drs start piling up three, four or more meds on a growing brain, or any brain for that matter.

Ashley's Mom said...

When I first adopted Ashley, she was only on Tegretol. That did not do well though. Every time she got sick, she would have seizures. I almost lost her on Christmas Eve 1998 due to a status seizure. After that, she was put on Depakene, and that drug helped her for many years. It was only with the onset of puberty that her seizures picked up again. That was about a year ago.

From that point, the Richmond neuro has added Keppra first, then Topamax, and finally Trileptal. She is on those four right now as well as Depo Provero shots to try to keep her hormone level a little more stable.

Currently she is having 2-3 seizures a day.

I really, really don't like the Topamax - too many negative side effects. I think at this point, the Trileptal is the most effective but after the visit to UVA, the doc there feels we may need to bump that dose a little higher.

It's a constant struggle, as I am sure you know, and I just really don't like having to use such powerful meds unless absolutely necessary.

MMC said...

Oh, wow, I know you're doing the best I can and the point of this visit was, at least partly, because you were concerned about the amount of drugs. But I sure find four meds scary. They interact with each other and I don't think I have ever heard a story about that kind of polytherapy being successful.

Yeah, Topomax, has a bad rep. I've heard parents call it Dopamax and our neuro once referred to it once as Toxicmax. It's one of the few we haven't tried. Apparently it works better for weight loss than as a seizure med.

I really do know the constant struggle (the Blue Jay is almost 15 years old and her seizures started at 13 months). We are on Keppra right now and (knock on wood ... my head) its the first drug that has given us freedom from seizures. We did the ketogenic diet for many years though and after 11 drugs which hadn't touched her seizures at all, it was the first thing that worked. We were seizure-free for quite a while. Have you ever considered the diet as an option?

Candice said...

God is so good! I'm glad that you found a team of doctors that are wonderful.

I have a question for you that I have found difficult lately. I know that you are a single working mom, how do you do it? Since we have had Rebecca, I can barely get in a 30 hour work week & I know that my coworkers are getting sick of me taking off all the time.

How do you work and have special need kids? Is your job understanding? What were your hardships, if any, with this?

Ashley's Mom said...

Candice, how about if I blog about that tomorrow? I need to think it through tonight and I will write about it on tomorrow's post.