Tuesday, July 23, 2013

Medical Stuff

This is not going to be a fun post or have any pictures.  I wanted to update everyone on various medical things going on in our house recently.

Medical Insurance:  I will start out by saying I am thankful we have Medicaid because it has helped tremendously with finances.  However, it has been a bit of a struggle to get certain things figured out with this insurance compared to our old one.  We are looking for a second opinion from another Immunologist, but we can only see doctors in MD which has really limited our options.  Luckily, I did find out that Children's in DC does take our insurance so we have an appointment for October.  When we changed insurance companies we had to find a new pediatrician which was no fun.  I loved our old one.  I finally recently found one I liked, but yesterday I got a letter in the mail saying as of September 28 they will no longer accept our insurance.  Ugh!  I spent the last 2 days researching doctors and making calls.  So many of them are not accepting new patients, but I did find one I hope will work out.  They are connected with Hopkins so all of Ryder's medical stuff is already in their system.  The boys will go for their 6 year appointment the beginning of August.  Now I am busy getting records transferred and things changed through insurance.  Such a pain!  And then I got a letter in the mail today saying Kennedy Krieger could not get authorization for Ryder's upcoming Psychiatry appointment.  I called and they explained he can only have 1 mental health provider.  Since he sees a behavior therapist at school that is considered a mental health professional.  They tried to tell me I would have to close that claim in order to see the psychiatrist.  After getting insurance on the phone at the same time we got special permission for 1 initial evaluation and then medicine maintenance if needed.  I am really hoping it all works out in the end.

Tyler:  He has been pretty healthy for his 14 months of life.  He did have RSV over the winter and an ear infection at his birthday, but nothing too bad.  About a month ago he started having really bad diarrhea and wasn't eating much at all.  After about 4 days I took him to the doctor just to see if anything was going on.  They sent us to get a bunch of stool samples.  That is how we found out he had C Diff which is an infection in the intestines.  The pediatrician explained originally she was not going to test for this because it is uncommon to find in a young child with no risk factors (long term antibiotic use, hospitalization, or immune system issues), but last minute she added it in because his symptoms just sounded so much like it.  I am glad she did decide to test for it because letting C Diff go untreated can cause long term issues.  He was on Flagyl for 7 days, but that did not clear up the infection.  So he is now on his second round of Flagyl and they added Vanco which is a very strong antibiotic.  I am hoping this will get rid of it.  In the meantime, I have been doing my best to keep his dirty diapers away from everyone else and trying to disinfect as much as possible.  It can be extremely contagious and could be very bad for Ryder to get.  He has his 15 month appointment with the pediatrician on Tuesday next week so we will also discuss how he is doing with the medicine and symptoms.

Ryder:  I have been talking to lots of other parents whose children do the same infusions as Ryder.  I have learned there are so many options out there for needles, tubing, pumps, rate, and so much more.  The doctors never tell you all of this so I thought the side effects Ryder is having were just par for the course.  The fact is, there are things you can try to lessen them.  Some people will always have side effects no matter what, but we won't know unless we try a few different things.  I called the specialty pharmacy asking for options and was told we could get different tubing to slow the rate, but they would have to ask the immunologist first.  They also told me there was no different needle which stinks.  The one he uses now as the actual needle stay in, but there are sets that have the needle come out and just a plastic catheter stay in.  However, our pharmacy and insurance combo don't carry those.  I heard back and the Immunologist told them to send us 2 slower sets of tubing to see if they help at all.  If they do then we will switch completely.  Tomorrow Ryder has his appointment at Hopkins with Pulmonology.  He has been having chronic issues with his lungs so I have no idea what we will find out.

The rest of us have been doing good.  No major medical stuff to talk about.