Life with MS & EDS

December 13, 2008

What a Difference a Year Makes

Filed under: Uncategorized — by mseds @ 8:00 am
Tags: , , , , ,

A year ago today we were with Little Sister in the emergency room. She had her tonsils and adenoids taken out a week and a half earlier. The first day or two after surgery went well. Other than refusing ice cream in favor of dry, crunchy things like crackers and granola bars (texture issues are a common difficulty with kids with hypotonia), refusing to drink, and having to wake her every 4 hours for pain medicine, things were going pretty well. Then the areas started to scab and it was all down hill from there. Each day she ate less and less and eventually she wouldn’t eat at all. I offered her ice cream or milkshakes breakfast, lunch, and dinner, but she flat out refused. At this point I questioned if she was really my kid! We tried yogurt (typically a favorite food), but she refused. We tried everything we could think of, but she refused everything and was barely drinking.

I suppose it shouldn’t have been a surprise that when I called the doctor they said to get to an emergency room to get her re-hydrated. We tried to get down to CHOP where the surgery was done, but ice was falling from the sky, so we went to a local emergency room instead. Thankfully they were pretty good with her. Little Sister got much better after getting the IV and a stronger pain medicine. After that we were able to cut back on the prescription pain meds and she also started eating more. The next day she drank a whole 9 oz. and yes, that was considered fantastic progress. Talk about a rough few weeks.

Her surgery was on the first night of Chanukah last year. It was a pretty rotten Chanukah. Not even presents every night could cheer her up. Thankfully she was much better by Christmas. (We’re an interfaith family, so we celebrate both.) Although it was a very rough few weeks, I’m very thankful that we did the surgery. She has been so much healthier since then. She no longer gets 105 degree fevers every six weeks. We made it through a whole year without going to an emergency care center! She gets over colds much more quickly. She finally started eating more (she didn’t eat much before the surgery, so I suppose we shouldn’t have been caught off guard when she wouldn’t eat during recovery.) She completely stopped drooling. We finally have pictures of her with a dry chin! Not only that, but her speech improved dramatically over the next few months.

Thinking back to that day reminded me that CHOP is doing a genetic study of approximately 100k patients over 3 years, along with some of their parents. They hope to compare the genetic markers of children to see if they can isolate root genes for certain symptoms and disorders. At the time Little Sister was still undiagnosed. She obviously had hypotonia, but we didn’t know what was causing it. So, I volunteered myself and my husband to participate. While Little Sister was waking up from surgery, a nurse took a teaspoon worth of blood with a tiny needle. She had just had things removed from her body, so I didn’t think anything of giving that little blood. Now that she has the EDS diagnosis, hopefully this information has made it back to their study. Now I need to figure out how to let them know about my MS diagnosis, although I’m not sure they’ll track this since it tends to affect people outside of their target age bracket.

I hope things are going well with their study and that they are making some progress in identifying genetic links. There’s so much promise in genetic research, but I am concerned that healthcare policy and big business are going to slow down progress. When we were trying to diagnose Little Sister, we agreed to a Karyotype, which studies the chromosomes and can help in diagnosing or ruling out many disorders and syndromes. Her Karyotype didn’t show anything, but that just means it ruled out things the medical community has already traced to a gene and figured out how to test for. We were offered the opportunity for a full genetic mapping, but declined. We were concerned that the information it would reveal could some day lead her to being denied health or life insurance. Our country’s laws have not been keeping pace with medical innovations and advancements and that causes great concern. I hope that some day solid rules barring genetic discrimination will be the law of the land, but in the meantime, businesses don’t have to insure people they know will cost them lots of money. Preexisting conditions make it extremely difficult to change jobs or insurance plans or even obtain decent coverage. I’m extremely fortunate that I don’t need to worry about that as long as I keep my current job, but it angers me that this is a major issue for so many Americans.

This post started as a reflection of how well Little Sister is doing and morphed into expressing distain for medical policies in our country. Sorry about that. It’s frustrating to be living in a time where there are so many medical possibilities that are being constrained by antiquated and unenlightened legislative policies. I have high hopes that things will change over the next four years, not just for the promises it could bring Little Sister or me, but for the millions of people struggling with or dying from diseases we should be working to prevent.

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3 Comments »

  1. Excellent Post!!!!

    I remember when I finally had my tonsils taken out when I was in college. After growing up with recurrent strep throat and tonsillitis (several times each year), the doctor said it was time. After surgery, I didn’t experience even a sniffle for 2.5 years.

    Comment by Lisa Emrich — December 13, 2008 @ 1:15 pm

  2. I also had my tonsils out as an adult. It was the year after college. They tried to take them out when I was 5, but my fever went through the roof and they thought I was allergic to anesthesia. After college I finally got tested and was negative for Malignant Hyperthermia, so the first thing I did after I got a job in D.C. was book an ENT appointment. I was so thrilled to have them taken out. The first week was hellish, but I was so much healthier after they were gone. If only MS was that easy to solve.

    Comment by mseds — December 13, 2008 @ 9:20 pm

  3. […] hosted a holiday party our first year back up here in 2006 and last year had to skip it because of Little Sister’s tonsillectomy, but I’m glad we’ve restarted the tradition and see no reason why it can’t continue for years […]

    Pingback by It Could Be Worse! « Life with MS & EDS — December 28, 2008 @ 3:56 pm


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