Alex and Maddy

Alex and Maddy

Thursday, September 8, 2011

Update on our appts

We arrived in Houston on Tuesday. We had a sleep study scheduled for Tuesday night. Sleep studies are one of Alex's least favorite tests, but he did VERY well. He was a trooper while they hooked him up and was asleep before the tech even left the room. Poor baby was exhausted!

We woke up yesterday morning to quickly run home and shower before heading to the hospital for 2 appointments. Our first appt was with Dr. P (Alex's allergist/immunologist). She totally caught me off guard when as soon as she walked in she announced that she was going to be starting Alex on Sub Q immunoglobulin (just like IVIG, but a different infusion method). This is a treatment that has been used sporadically on Alex many times and has been on the table as a regular treatment for a long time! It is an infusion that should help Alex's immune system work better and keep him from getting sick so often and so severely. The majority of the appointment was spent discussing this. Alex also needed to get another vaccine as he has no titers for pneumoccocal.

After a break to visit some friends and grab lunch, we headed to our second appt with Dr. J (the pulmonologist/sleep dr). She unfortunately only had very preliminary results so we discussed a lot of "what ifs". The first thing she did was a Pulmonary Function Test. Alex's results were significantly worse then his last two PFT's. She also confirmed that Alex definitely has asthma. After discussing that we moved on to the sleep study. She does know that Alex has both restless leg syndrome as well as Periodic Limb Movement Disorder. She is going to run some labs before we determine whether or not to treat. She did not have any results, but we discussed possible oxygen or bipap at night depending on what the results show.

We see GI tomorrow. I have been told at this point that we are putting Alex back on TPN at night. I will not know until tomorrow whether we will be admitted for a few days or not.

Ali

3 comments:

  1. Hugs friend!!!! Praying for the remaining appointments and for a quick return home!!

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  2. The appointments sound very productive. What treatments do they do with RLS and PLMD? Q has myoclonic jerks at night and RLS. It's pretty significant, but no one has ever mentioned treating her for these.

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  3. Good luck!

    Does he have to have frequent injections? If you can find them (and he can tolerate it!) I HIGHLY recommend the alcohol prep swabs that also have an anesthetic in them. They REALLY REALLY REALLY do make a difference (I had to do SC Lovenox & Heparin up to 4x/day with each of the kids). If the med itself burns, it doesn't always help, but the needle jab itself is painless. There's also the Buzzy Bee that might be helpful too.

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