This morning Ryder and I were in the car and heading to Hopkins by 7:10am. Ryder's appointment was at 8:15 and we were checked in and he had been weighed and measured by 8:30am so that wasn't too bad. We only had to sit in the exam room for about 3 minutes before Dr.Lederman came to see us which was really good.
Monday, January 24, 2011
He started off by asking how Ryder's infection history has been since we saw him in May so we went over all of that. Then he did a physical exam on Ryder looking at everything. Once he was finished with all of that he sat down and showed me Ryder's blood work results. He had it all in a nice chart so it was pretty easy to understand once he explained what the numbers meant.
Apparently they use the Prevnar vaccine as the main diagnostic tool for kids when looking at primary immunodeficiency issues. His initial antibody values ranged from 0.1-0.4 which Dr.Lederman explained meant he had no antibodies from the vaccine (even after having the normal 4 doses babies receive). Then he had a booster shot given and more blood work 1 month later which showed values ranging from 10-33 which Dr.Lederman explained shows a response from his immune system, but not to the normal extent that would be expected (pointed out a 6-7 month fetus would have that type of response). Then we looked at the antibody values from 6 months after the booster shot was given which ranged from 0-0.4 which once again shows no antibodies. It was obvious to me at that point that something was not right about Ryder's immune system.
Dr.Lederman told me he feels with the number and type of illnesses/infections Ryder gets along with all of the blood work results that Ryder definitely has a Primary Immunodeficiency Disease. The only actual name he mentioned was the Transient Hypogammaglobulinemia, but said he is no longer transient. He then went on toe say he feels it is in the best interest of Ryder to start him on IV Immunoglobulin treatments which are basically IV antibodies to help increase Ryder's immune system.
The actual product that Ryder will receive is called Hizentra. They went over all of the information about this, showed me a video and discussed the options we have for administering it to Ryder. We decided to go with the weekly at-home infusions (another option was monthly IV treatments at the clinic, but they said many younger kids have more side effects from this option and due to my knowledge of needles from my Diabetes they felt it was best to try the in-home infusions). The first infusion will be given to Ryder at the clinic so they can make sure he doesn't have any reactions to the product. I was told the most common reactions are soreness, redness or swelling at the infusion site, headache, and nausea. They told me if he experiences the nausea they will be able to prescribe a medication to give ahead of time to reduce it. During the first infusion they will teach me how to administer the infusion so all future ones can be done at home on a weekly basis. Dr.Lederman said he was is not able to tell us right now if this will be a life-long thing for Ryder, but it is a very high possibility he will require these infusions for the rest of his life. They also gave me a prescription for EMLA cream which will numb the skin where Ryder will receive the infusion so he shouldn't actually feel the needle insertion, but they told me it will take a while for him to "get used" to the whole process.
I am waiting to hear from the Immunology office, but out hopes are to have the first infusion on Friday as long as insurance moves quick enough and we don't run into any issues with insurance. I have tried looking up the Hizentra online through the insurance company to find out if it needs pre-authorization or what not, but can't find it listed anywhere so not sure if that is a bad sign or not.
Posted by April at 2:32 PM