Last year at Labor Day, my daughter had been ill for 4 months. We grieved the summer that she had lost and knew the future would be challenging but we were generally optimistic. If we could get her to the experts at Cincinnati, if we could get her into PT and OT, everything would be fine. Even as her symptoms, particularly the neuro/autonomic dysfunction symptoms, worsened, we had high hopes that the right people could help us.
Well, here we are a year later. We have seen the experts at Cincinnati Children’s. Things are not better, they are worse – although, that is not the fault of the experts. I am grateful beyond words to have them on our team. Unfortunately, it is a complex situation where there are no easy answers.
My daughter is sad/angry/frustrated that she missed the fair and Bible School again.
I am sad/angry/frustrated that she has missed a whole year of school and is probably going to miss another year if things don’t change. That she feels stupid because she struggles to find the right word at times – a 12 year old shouldn’t feel that way. That she can’t even do the PT and OT that are so vital to keeping her muscles strong and joints stable. That she still has no medication that actually helps the pain. That today is our first day of school (we homeschool) and I have no idea if she will be able to do any school work.
I am feeling a bit melancholy today as I look back over the last year. It is so hard to watch as life starts passing your child by – there is so much she is missing. Now we are starting a second school year since she got ill and she is worse, not better. It would be easy to lose hope in this situation.
Fortunately, I have concrete hope today – in the form of the Driscoll Theory. If the Driscoll Theory is correct, and I believe that it is because I have seen the data and how my daughter fits the profile with my own eyes, then we now have an explanation for the worst parts of EDS. AND, best of all, it comes with a treatment option. A couple actually, where there were none before. And that is hopeful news for EDSers everywhere.
We have started the OTC mast cell treatment (Zyrtec and Zantac) and are seeing real improvement. My daughter is eating without pain, for the first time in I don’t know how long! Many of the other symptoms – blurred vision, numbness, dizziness – are lessening as the days pass. This is a very positive development.
No matter how bleak or frustrating the situation is, there is always hope. The Driscoll Theory dropped into my life when I was very low and prepared to accept cervical fusion as the only treatment option. Now I believe with all of my heart that there is hope on the horizon.
Go to http://www.prettyill.com and check out the Drsicoll Theory and videos explaining externally communicating hydrocephalus and mast cell activation disorder as it pertains to EDS.