Just Going Through The Motions...Part III

Since it is Throat Punch Thursday and I have many people I would love to have my way with, I think I will continue with my medical mystery!! When you first start visiting doctors you are determined to fix things and excited to see a new doctor to get a different perspective. The determination doesn't go away but as you keep being derailed and detoured you end up losing faith in them. Them meaning the doctor's of course. Do you ever wonder where these doctors get their medical degrees from? Some of the things these specialists have said to me were ignorant and caused me to question their judgement. 

After the Orthopedic appointment, which was on the 2nd, we only had a few days to relax before another road trip. At least it was closer and only required a hour and a half drive. He was calmer but this was going to be an all day trip. The Neurosurgeon wanted to have an SSEP test done. From the SSEP, a neurologist is able to determine the time it takes for nerve fibres to relay a stimulus from the point of stimulation (wrist or ankle) to a detection site on the scalp, neck or back. By analyzing the SSEP pattern, the neurologist can get an idea of how well these sensory nerves are working. 

Everything I read said that it was pretty non-intrusive and the doctor said it shouldn't be painful but it was a long test. It lasted four hours!!! They tested his arms and legs so it was two hours per section. Chucky Cheese was not having a good day either. He peed himself when we were trying to get things set up which worked out actually because we then suggested he put a robe on. He hates clothes so it wasn't that hard. It was the rest of the test that was a challenge. We started with his legs which seemed to really bother him. He was screaming and I felt so helpless. I wanted to pick him up and tear the wires off to leave but we needed the test done. Arms were not that big of a deal. He didn't seem phased by it. Thankfully that part is over. Now for the results. Thinking about them makes me want to cringe.


It isn't that I want something to be wrong though. I know something is wrong and I hate the process. His arm nerves are normal. Yippeee!!! But... remember I said he has a really tough time with his legs? The results were inconclusive due to "child was uncooperative". He wasn't uncooperative. He was in pain!!! Whatever.. Neuro-surgeon does not want to mess with the syrinx now. He doesn't think it is necessary. Ugh.... Now we had to eat and head to the next doctor for the day. This is getting exhausting!

We arrived to the urologist's office and the "intern" was talking to me when he comes out with,"Well, Autism isn't a neurological disorder so maybe there is something going on neurologically" WTF!!! Where do these people get their degrees???However, they don't feel his incontinence is behavioral and would like to do an ultrasound of his kidneys and bladder as well as a Urodynamics test. The last one requires him to be catherized which in my opinion is VERY intrusive. UGH!!! The neuro surgeon will then see the tests and decide accordingly if he feels the syrinx is an issue.  In the meantime we wait and worry. 

The neurologist called and says she does not see a huge issue with him and it is so frustrating. I have notes from the school, severe behavior regression, test scores from his tri-annual and his leg looks odd. How much do I have to give them. I travel all over the Northeast and still haven't gotten anywhere. Hopefully, if I can find a place to stay in Boston, we can go to the appointment with the neuro-geneticist and Orthopedic at the Boston Children's Hospital. I am still awaiting an approval letter! 


So my Throat Punch Thursday goes to doctors. They would rather blame it on Chucky Cheese's pre-existing condition then looking deeper at what is going on!!! I need answers and I am exhausted and drained. He is sick of all the doctors and he is frustrated with his body. It just isn't working right for him. We will get through this as we always do, but it is getting harder to cope. Thanks for listening and reading. I will continue this when I find out more. Please keep us in your thoughts and hopes for answers and relief. His Triannual is on the fourth and that means I get to deal with all of it face to face. Overwhelmed I am but I think I am ready. Oh, It's my birthday!!! Woo Hoo!!!