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!!!!!