Nathan had an appt with a local Neurologist due to the seizure he had a few weeks ago. To recap the seizure, Nathan was having a good day and had a friend stay overnight with him. About 3am Nate came into our bedroom saying he woke up and bit his tong and it hurt real badly and it was bleeding. So I got up and looked at it and he had bit right through his tong. He also had some blood running out of his ear. I did not freak out. I got him cleaned up and gave him some pain med and ice chips. In the morning I asked him what happened and all since he did not want to go back to sleep. He said all he remembers is he was sleeping and he woke up with his tong bleeding and hurting real bad. So when you have a child that has had several brain surgeries you know that they can at any time have a seizure. So adding 2+2, his Pediatrician and I, agreed that he did have a seizure. He set up EEG, CT and blood work and a consult with a Neurologist.
Last weekend we got a couple of papers in the mail to fill out before his appt. I did that and also included a copy of his nero-psych eval. that we got last week. Sunday Nate had a real bad pain day. Saturday evening was not all that good either. He asked for pain meds both days and evenings. Sunday he did not get to sleep till 4am. His appt was at 1 so we had to leave before noon to get there in time. He did not want to go and still was feeling real bad. When he feels like this everyone around him knows he does not feel good. But we got him in the car to go. We got into the exam room and his NP came in asking all of the questions that I had filled out. This always annoys Nathan. He does not understand why everyone has to know all of his information like if he wets the bed or not. So Nate was very verbal letting her know that he thought it was not any of her business. I just told her that I have all of her answers written down on the papers they sent me to fill out and anything else was in the extra information I provided for them. She did not like that but Hellooooo it would make things much easier for her and everyone involved. So by the time the Neurologist came in he had heard from his NP that Nate was very difficult and rude. Yes he was rude and I do not like that but he is a child in pain and for me to try to talk and explain to him that it is wrong was not going to get us any place because when he is in that kind of pain he does not know and does not have that much control over what he does. Thus one reason why we were there seeking help. UGGH!
The Neurologist first thing said that the tests showed that Nate did not have a seizure. So Nathan gets even more upset and announces to the Doc ?What are you saying that I am lying that I had a seizure, do you think that I bit my tong right through for the fun of it and where did the blood in my ear come from?? The Doc said he did not know. Then he asked if Nathan was having pain and where was it. Nathan said his head and all of his body hurt today. He asked where does his head hurt. Nathan said the whole thing. So of course that was not satisfactory to him at all. So he checked Nathan?s reflexes. Then he started checking if Nathan felt the same scratch on each side the same. Nathan was pretty consistent that his left side he felt more than his right. So Nathan was so overwhelmed with everything he got off of the table and started walking out of the room. This made the Doc mad so he began to tell Nathan that he did not have to be his Doctor and he could find another one for all he cared and he was not going to have him come into his office and take up his time if Nathan did not want to participate. He wrote a Rx for topamax and said come back in 2 months and left the room.
In between all of this he had Dr. Narayanans info from when we saw her and she had on the file that Nathan was autistic and that ?Mom? was in denial. He asked why did I not list the lumbar shunt. I told him that Nate did not have a lumbar shunt he had a VP shunt. He then asked why we went to another Doc instead of Dr. N. He also said that Nathan needed to see an ophthalmologist. I told him that there were no neuro ophthalmologists in Toledo area that we had to go to Columbus or Cleveland and he said any ophthalmologist can do the same thing. So I had to explain to him that the one Dr. Mehalis plays a neuro op but he does not have the credentials of one. And I told him that he missed Nathans high pressures when we ended up having them checked by a LP and they read in the mid 40?s even after taping. So I would stay with a real neuro op thank you.
Well he and Dr. N are from the same hospital and same country. And he did not like it when I told him that if I would have let Dr. N put in the triple chamber Lumbar shunt in my son that it would have pulled his whole cerebellum out of his skull and killed him. That is when I think I decided that we are done with local Doc?s. But? we needed the Rx.
Soooo looks like I have written books today. I am very frustrated and I am sure that I am not the only one that has been through this sort of thing. We will get past this and get on with seeking relief from pain and confusion.
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I know this is usually about your son but I saw your article about your daughter 1st. I have Ehlers-Danlos Syndrome. I have been though all of this and I have private insurance (at the moment anyway). I'm 20 now (21 in March) but I've been going through this my whole life, as I'm sure you well know. I didn't even know I had it until Dr. Clair Francomano told me when I was about 17. By then I had been having problems for over 10 years. At first it was just little things, like falls and braking a bone in my hand. Then I began to dislocate basically any and everything that can dislocate. I've had to put all of my life on hold for almost the past 7 years, just to find out what was wrong and find treatment. Which as you know, is not easy to come by. I live in Florida and when Dr. Francomano found out about my case, she even offered a mercy fight. Unfortunately, my mother nor I could handle that kind of small plane, so we made arrangements to go see her. She did her tests and all, but even before that all she had to do was look at me and she could tell that I had EDS. Turns out, I have more then 1 type of this birth defect. So, anything is possible. Tell your daughter she's not imagining anything and that I went through the same thing. No one ever seems to understand unless they themselves live with it or know someone that does. Also tell her, she's not the 1st one to think those things either, when so many people tell you your wrong sometimes you begin to believe them and that may be natural but, you have to remember that ridiculous that you would make up this kind of thing. I've actually had Child protective services call out on my family 3 times because of all of this and they always come up with nothing, and you know why that is? Because there is nothing to find! As long as you keep telling the truth about what's going on and you stick up for yourself (when needed), then you should be able to find help. I had to go half way across the country to find anyone who knew what they were talking about but once I did, things were helped. I guess what I'm mostly trying to say is that, your not alone, so don't ever think you are!
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