We went to the pain clinic at Cincinnati Children’s on Thursday – a year after I knew we needed to go! But we finally got there, so I am trying not to be bitter about it. As I mentioned previously, I was a little ambivalent about going. But it turns out, I had nothing to worry about. They are really great people and are going to make such a difference in Emily’s life.
We saw the psychologist first – they, of course, want Em to come down for 6 or so hours of instruction. Relaxation techniques, biofeedback, etc. I really want her to do this – I think it could be extraordinarily helpful – but we are going to have to figure out insurance. If our insurance only pays 60% it will be very difficult for us. We are already wracking up bills down there. Still waiting for BCMH so that is up in the air. Getting pretty sick and tired of waiting for insurance.
Anyway, after the psychologist, we saw Dr. Goldschneider. I really, really liked him and I think Em did too. He had a very nice, calm manner – he was serious and thoughtful but gently teased Em and put her at ease. He was incredulous that this was the first pain intervention we have had. When we talked about the RSD in her foot, he couldn’t believe that the only pain relief she had was Aleve and Tylenol. (Actually, I am furious about that – that my child was allowed to be in horrific pain. It was inhumane!) I think he really wished we had come to him a year ago. But, he didn’t waste a lot of time focusing on what wasn’t done – he just got on with helping her now. His recommendations:
~ Exercise – he wants her riding a stationary bike on a daily basis. Exercise does help reduce pain, so I imagine that is a standard part of any plan. Andrew got her one of the pedal units he uses with his patients up on the ARU – it is just a little frame with bike pedals that sits on the floor. The positive thing about it is she can sit pretty much anywhere and pedal, even if she isn’t feeling great. She has been sitting on the couch and using it fairly regularly since last week, so that is awesome. My brother also has a recumbent stationary bike that he gave us to use. She hasn’t really tried it yet but I have hope that she can work up to using it regularly.
~ Pain Meds – there are a number of options to try. No ‘we don’t like to give kids pain medication’ from him! First options are pretty standard – anti depressants and anti seizure meds. We are trying amitryptiline first, primarily for help with sleeping and a mild pain relief effect. Once we get that regulated, we will probably try Neurontin or Lyrica (both are anti seizure meds that are very useful for nerve type pain). I really had hoped that we would come home with several new meds to try Thursday night, but that wasn’t realistic! First of all, Em had to have an EKG before starting the amitryptiline because it can mess with heart rhythms. Second, he wants to add one med at a time so we know what works and what doesn’t. While I am impatient, I have to say that I do like his methodic approach.
~ Headache – he didn’t really do anything regarding her headache, since we are going to the headache clinic in Aug. He feels it is not migraines, that it is most likely cranial instability and will let the headache folks deal with it. That seemed quite reasonable to me as they will probably change anything he tries right now anyway! He did give us a bit of hope in that he said the headache clinic is one of the best in the country and that her headaches can be treated.
~ When we got ready to leave, he made a point to say that this is a work in progress. That he is coming into the story 14 months late but we now have him and the clinic on our team and they will help. They all recognized that her quality of life is ridiculous, practically non- existent, and they will change that for the better. I didn’t have to defend homeschooling or the fact that she hasn’t even been able to do any work at home all year. I mentioned it a couple times and both the Dr and the psychologist were basically like ‘ well, yeah, of course she wasn’t able to do schoolwork in the condition she is in.’ It just wasn’t an issue and I was thankful about that. We will be keeping in touch as we start the new med and he wants to see us again in Sept.
So, I was very nervous about this appointment but drove away feeling much relieved – a huge weight has been lifted off my shoulders. We now have some very competent people helping us to improve the life of my kid. They are now part of our medical team and I think they will make a huge difference! I am so glad we went – I definitely recommend pain management to anyone in a similar situation!