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.
Friday, April 3, 2009
Daughter Jessica's appt. with a local Geneticist
I know that this blog is for Nathan's journey. But Jessica our middle child suffers from joint pain, joint dislocations, stomach issues, extreme exhaustion and fatigue, horrible menstrual issues, skin irritations to any and everything and head aches that last for days. During our battles with Nathan's health Jessica has been developing some of these symptoms listed and some of them have been going on for years.
Since my husband got laid off of work at Christmas time we no longer have private insurance. Jessica is 18 years old and graduating from High School next month and has been accepted to Ohio State. We need to get her proper diagnosis so we have a medical plan of action in place for when she is away at college. But we now have medicaid for the children and are forced to go see a local Geneticist for her diagnosis. This is what happened in the appointment. I am posting it here for documentation purposes.
It has been a while since our appointment with the local Geneticist. But for me when I experience things that are not right I personally need a while to sort out my thoughts before I put them down on paper. I try to teach my kids to think twice and type once. So I have to follow the same. As you can see that I am already confused and not happy with the knowledge that this Geneticist has in regards to connective tissue disorders as a whole.
When we had an appt last summer to go to Baltimore to see Dr. Francamano she sent us about an inches worth of paperwork to fill out. This Doc sent us 3 papers that is all. I filled them out and actually added more to them. We get there and the NP comes in and we verbally answer all of the family questions that was asked in the paper work and that was ok. Then the Doc comes in and after the first 5 minutes I knew that he knew next to nothing about EDS. He looked at her knees and lightly grabbed her knee cap and wiggled it around and then her elbows and he pulled her skin out from her elbows and said "no she does not have EDS or any other connective tissue disorder". He starts to walk out of the office and I am probably looking like I was ready to say WTF? So he stopped and told his nurse that she can order a CBC and a CMP. So me being me said “Well I can get that order from a Proctologist! And this is what we came here for?” He then stopped and said that she can add a caratine order to that. I just said whatever to myself and we left. As soon as we got out of the door Jessica started crying. She said if that is not what she has then what? I told her that we will get her to Dr. Francamano no matter what we have to do to get this figured out. She said that he made her feel like she was faking it. “As if I have not heard and or thought that myself before”
Soooooo we get last week in the mail his report saying pretty much what I said above. The blood all came back with in the normal ranges. Where do we go from here? She graduates in May so we will get something set up for this summer. She still has her joint pain and the fatigue and the stomach issues. We will continue to have her take the vitamins and supplements. Life will go on. I do know one thing …. Like everything else … we have to stop trying the local Docs and go to the professionals. But check their credentials first. They may claim they are a Doctor specializing in something and or they play one on TV but do they have the credentials to back them up?????
This whole situation has made me look further into the clinical protocol of obtaining a EDS diagnosis. Several things he did not do.
1. He did not do a Beighton scale on her
2. He did not measure her arm span
3. He did not look her body over to look at her scaring issues
4. He ran a serum caratin (serum caratin tests does not show anything definitive in a diagnosis}
5. He needed to order a tissue biopsy
6. He did not take into consideration that she has extensive knee damage
7. He did not look at her blood testing that she has already had done looking at her ESR? that clearly shows she is experiencing a inflammation problem.
Sooooo. Now I am wondering if I should not turn him into our insurance for investigation. Oh yes and another thing is that he pulled her skin out from her neck and said that it is not elastic enough for classical Ehlers Danlos. I asked him what about the other categories of EDS. He said that there are only 3. Well then I explained to him that there was more than 3 and that in recent research they have found yet another type of classification so I think that brings it to ... I think now...8 categories. Well he did not seem to like the fact that I have done my research on this. UUgggh Arrogant MD's drive me nuts!!!!!
Since my husband got laid off of work at Christmas time we no longer have private insurance. Jessica is 18 years old and graduating from High School next month and has been accepted to Ohio State. We need to get her proper diagnosis so we have a medical plan of action in place for when she is away at college. But we now have medicaid for the children and are forced to go see a local Geneticist for her diagnosis. This is what happened in the appointment. I am posting it here for documentation purposes.
It has been a while since our appointment with the local Geneticist. But for me when I experience things that are not right I personally need a while to sort out my thoughts before I put them down on paper. I try to teach my kids to think twice and type once. So I have to follow the same. As you can see that I am already confused and not happy with the knowledge that this Geneticist has in regards to connective tissue disorders as a whole.
When we had an appt last summer to go to Baltimore to see Dr. Francamano she sent us about an inches worth of paperwork to fill out. This Doc sent us 3 papers that is all. I filled them out and actually added more to them. We get there and the NP comes in and we verbally answer all of the family questions that was asked in the paper work and that was ok. Then the Doc comes in and after the first 5 minutes I knew that he knew next to nothing about EDS. He looked at her knees and lightly grabbed her knee cap and wiggled it around and then her elbows and he pulled her skin out from her elbows and said "no she does not have EDS or any other connective tissue disorder". He starts to walk out of the office and I am probably looking like I was ready to say WTF? So he stopped and told his nurse that she can order a CBC and a CMP. So me being me said “Well I can get that order from a Proctologist! And this is what we came here for?” He then stopped and said that she can add a caratine order to that. I just said whatever to myself and we left. As soon as we got out of the door Jessica started crying. She said if that is not what she has then what? I told her that we will get her to Dr. Francamano no matter what we have to do to get this figured out. She said that he made her feel like she was faking it. “As if I have not heard and or thought that myself before”
Soooooo we get last week in the mail his report saying pretty much what I said above. The blood all came back with in the normal ranges. Where do we go from here? She graduates in May so we will get something set up for this summer. She still has her joint pain and the fatigue and the stomach issues. We will continue to have her take the vitamins and supplements. Life will go on. I do know one thing …. Like everything else … we have to stop trying the local Docs and go to the professionals. But check their credentials first. They may claim they are a Doctor specializing in something and or they play one on TV but do they have the credentials to back them up?????
This whole situation has made me look further into the clinical protocol of obtaining a EDS diagnosis. Several things he did not do.
1. He did not do a Beighton scale on her
2. He did not measure her arm span
3. He did not look her body over to look at her scaring issues
4. He ran a serum caratin (serum caratin tests does not show anything definitive in a diagnosis}
5. He needed to order a tissue biopsy
6. He did not take into consideration that she has extensive knee damage
7. He did not look at her blood testing that she has already had done looking at her ESR? that clearly shows she is experiencing a inflammation problem.
Sooooo. Now I am wondering if I should not turn him into our insurance for investigation. Oh yes and another thing is that he pulled her skin out from her neck and said that it is not elastic enough for classical Ehlers Danlos. I asked him what about the other categories of EDS. He said that there are only 3. Well then I explained to him that there was more than 3 and that in recent research they have found yet another type of classification so I think that brings it to ... I think now...8 categories. Well he did not seem to like the fact that I have done my research on this. UUgggh Arrogant MD's drive me nuts!!!!!
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