Showing posts with label Neurologist. Show all posts
Showing posts with label Neurologist. Show all posts

Thursday, May 17, 2012

Just Going Through The Motions...Part III

5/17/2012 0 Comments

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!!! 

Sunday, February 20, 2011

Coping Skills

2/20/2011 0 Comments
Chucky was three before I had any clue as to what was going on with him. I went three years thinking this child didn't like me at all. It was a hard three years so I think when I received a diagnosis I was relieved. There was a reason why he was not attentive to me. It gave me closure and moving forward was so much easier. I instantly found myself researching and looking for methods to help him grow. I never thought about curing him just understanding him. I found myself content with him and happy he was who he was.

Recently, I found myself reliving this nightmare. My oldest son, Buddy, who had a lot of early intervention as a baby, is having immense difficulties in school. He is performing below grade level and doesn't have any friends. I was not blind to the issues at home but I was unaware they were happening at school as well. He cries in school if he drops a pencil and has trouble doing his work as well. I got a phone call from his teacher the other day because she saw his head jerking back and forth. She said it was happening every 5 seconds. This is exactly what I had discovered in December but it had gotten so much better. 

In all actuality, I received three phone calls regarding his head movement. This is concerning. After the calls I scheduled an appointment. The doctor said he feels that Buddy has Tourette's Syndrome. I am not sure how to feel. I knew something was going on with him and the Developmental Pediatrician could not see him for seven months. After the doctor stated this he started talking about medication and that scares me. I do not feel as if medication is entirely bad but I can say that I would prefer to try as many natural treatment methods possible before medicating him. I don't know if that is even possible for Tourette's. I do know that many people do not need medication but it becomes an issue if the tics interfere in their daily life which is the case with my son. 

He has serious difficulties reading and although Math is his strong subject, if he has to really think about the problems his tics get really bad. I also spoke to the nurse and she said that he was having accidents in school. She said that she felt it was happening more after severe episodes of his tics. I am not sure what the significance is if any but it is just a thought. I really am not to educated on this issue, but I will guarantee you that I will have lots to learn and share through this journey. I have already learned that it is common for people with Tourettes to have symptoms that mock ADHD which is what they originally thought was going on with him. Interesting eh? 

I have found a different Developmental Pediatrician and a Neurologist that will see him in March. That is way better than 7 months. I hope we can get answers and better understand what he is going through. When I explained the school issues, home issues and the Tourettes the pediatrician scheduled two consecutive visits to ensure that we can get to the bottom of this. They also sent out packets to fill out regarding ADD and Aspergers. They feel that his symptoms seem very much like these disorders and Tourettes is common with forms of Autism. 

Now that I rambled about all of the jumbled mess I have here, Thanks for being a wonderful support and I hope that you can take something out of my posts that help you in your journey. 
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