This morning I had to wake the boys up so that we could get out of the house in time to make it to Hopkins by 8am. They were not very happy or cooperative while getting dressed or getting in the car, but by the time we made it to Hopkins they seemed to be in decent moods. We got checked in and only had to wait about 3 minutes before we got called into the back. Normally when we have an appointment at Hopkins the wait time is much longer, but I guess that is the plus of having an appointment first thing in the morning. The nurse weighed (25.25 pounds) and measured (36.8 inches) Ryder, took his temperature (97.1, runs low just like I do) and blood pressure then showed us to the exam room.
Friday, May 7, 2010
After only waiting about 5 minutes an intern came into the room to talk, get Ryder's history, and examine him. They had all of his shot records or other records from the pediatrician showing how often he gets infections, but she had more specific questions about what happens when he gets sick and so on. During her hands-on exam she found that he has a number of swollen lymph nodes in his groin and neck along with the one he had behind his left ear (been there for 6 months or so). After that she went over the results of the blood work he had done a few weeks ago in preparation for this appointment. All of his general antibody numbers are within normal limits (although on the low end) which is good. They also tested for specific antibodies that should be present in his body as a result of his vaccinations. These results were all within normal limits (once again low normal though) except for one...pneumonia! Apparently, there should be 14 antibodies in the blood for pneumonia and Ryder only has 1. Imagine that, the kid who gets pneumonia all the time has just about no antibodies to fight it off. The intern then left the room to go and speak with the Immunologist and then would be back.
About 10-15 minutes later the intern and Immunologist both came into the room. The Immunologist was an older man and didn't seem to have a ton of bed-side manner, but unfortunately we have come across a number of specialists like this. (Ryder's geneticist is the only specialist I have LOVED so far) While he was doing a hands-on exam with Ryder he asked me some more questions. I was shocked at some of the questions he asked because it felt like he already knew Ryder...he asked things about chewing problems, gagging on certain foods, gagging/coughing and having liquid come out of his nose and other things that Ryder certainly does. After that he sat down with me and discussed what his thoughts are on Ryder.
(1) He is concerned that even after all 4 of the doses of Prevnar (pneumonia vaccine) Ryder only has 1 out of 14 antibodies in his system. He said a lot of the time when kids tend to have pneumonia frequently they will only see4-7 antibodies, but only having 1 is extremely uncommon. The plan of action for this concern is that on Tuesday we are going to the pediatrician for Ryder to get another dose of the Prevnar vaccine. Then 1 month after having the vaccine we have to get some blood work done. Once the Immunologist gets the results of the blood work he will call and let me know what the next step will be.
(2) The Immunologist is waiting to hear back from University of Maryland to find out if the H. Influenzae Non-Typable bacteria (the reason for his 4 week hospitalization at 9 months old) was found in just Ryder's lungs or if it was also found in his blood. Apparently, if it was actually in his blood then there is another test he needs to run but if it was just in his lungs he doesn't need to look into this other possibility. Once he gears back from University Of Maryland he will let me know if we need to add this blood test to the others we will do in 1 month.
(3) He wants Ryder to have a swallow study done to check for reflux and/or aspiration issues. A very common reason for somebody to get pneumonia frequently is if they aspirate liquid while eating and drinking. Aspirating is basically when somebody eats/drinks and the liquid goes into their lungs instead of down the esophagus. If this liquid sits in the lungs it will then turn into pneumonia. Also, people with reflux can be at risk for aspirating liquids and/or getting pneumonia. So he wants to rule out (hopefully) reflux and aspirating issues with Ryder. (Zak had this test at 6 months old and it is really not bad. They just have him sit on a table with an x-ray machine constantly running while they watch him drink liquids of various thicknesses and eat food with different textures. While watching the x-ray images they can see if any liquid is getting into his lungs or if he is having reflux issues) I just have to wait for the hospital to call me to set up the date. The pediatrician did mention having this test done last month when Ryder had pneumonia twice within 4 weeks so I have no problem getting it done.
So at the moment we will get Ryder the vaccination, have blood work in 1 month, schedule the swallow study, and then wait to hear back from the Immunologist.
Today was the first time I took Zak with us to Hopkins for one of Ryder's appointments so I was not sure how they were both going to behave. I am happy to say that Zak did very well and only got cranky near the end of the appointment. He had fun pushing Ryder around in the stroller (I chose to just use the single stroller) and write on a piece of paper with a pen that the intern gave to him. On another good note, I did find out that Ryder's lungs sound great right now even though he is coughing so the Immunologist said it is just his allergies causing the asthma cough to be worse right now.
Posted by April at 11:22 AM