| | Complex Special Needs
If you guys would think this would be in a better category just let me know. I'm a newbie. Just so you have some background information about me (since this is about my son) I have been diagnosed with Bipolar, Depression, Anxiety and Adult ADD and I have the positive markers for Lupus and have had the trademark butterfly rash but I have been way too busy with my son's appointments to go and see my dr, but I am next week all because I twisted my ankle 6 almost 7 weeks ago and the muscles are fine its the joint that is causing the pain.
Anyways my son is 11, and in his 11 years he has been diagnosed with 24 different medical problems, the one he got at birth was Down syndrome (I know there is a board for Down syndrome but when I looked in it, it is some moms who are getting positive markers and higher functioning kids and I don't want to scare those soon to be momma's because Ryan is a rare case). Anyways my biggest concerns right now are urology and after doing some research neurology. I am having the hardest time trying to find a specialist that works with complicated kids. I talked to the down syndrome clinic at Children's hospital and they said they couldn't help me that if I wanted to go there for an evaluation that I would have to start all over from scratch with genetics, I don't want to do that again, it wasn't me that caused the down syndrome it was his druggie biological sperm donor (he told me it was my fault when I told him about Ryan and Down syndrome I told him where to go and how fast to get there, he has nothing to do with Ryan, to Ryan my husband is daddy), anyways my husband and I had our own kids who are healthy as can be (and they are only 7 minutes apart in age and yes they are identical). I was young when I had Ryan (I was 19 almost 20 when he was born and it gave my 2 younger sisters a crash course in not having sex before you get married). I just don't know where to turn to, we went down to the University of Minnesota Urology and she said that she would find some names of specialists, well they are not taking in new patients, the one that I have found online in Minnesota spends half her day at the hospital doing rounds and is the Chief of Staff at Children's Hospital and no she isn't taking in any new patients.
I am making the trip down to the Mayo Clinic the beginning of September to see what they have to say (I didn't like what the urologist said yesterday). The problem is my son's brain structure is smaller than what it should be and his brain stem is smaller than what it should be considering the size of his brain so that is why we haven't been able to potty train him, he has what you would call a neurogenic bladder, he also has a fat lipoma along his lumbar region. We have done bladder tests that have shown that he retains it so much that his bladder has been stretched up to his belly button, and in turn it causes fluid to be retained on his kidneys, his left kidney is damaged because of it. I just can't seem to find the different procedures online that can be done. The specialists have given me 4 options and none of them sound like a good fix for Ryan.
I'm constantly running around and when we see specialists I hate telling the story all over again, even though there are changes with each specialist. I just wish that I could have them all in one room at one time and just get it done and over with, they could talk to each other about different ideas and what to do. Oh I can dream can't I.
Oh and it was so bad yesterday at the U that I started crying in the doctor's office, I've always done my best to keep a positive outlook on things and not let my kids get worried, but I let my guard down and lost it, I couldn't help it.