Emily's counts are stable with her WBC at 3000, and her ANC at 1500. The only thing that is troubling is her weight (of course). She weighed in at at 17.1 kilograms which is down from 17.4 last time. This isn't a huge drop but the Dr. decided to be concerned this week. (Lucky me)
The Dr. looked at me and said, "She keeps losing weight; she is on Concerta."
I wanted to scream at him! We took her off her ADHD med for over 2 months this spring and her eating didn't change at all. We decided it was in her best interest AND our best interest to put her back on the medicine. Life is much better this way :)
I have talked to other doctors who disagree with Dr. Pulsipher in saying they don't believe this is what is causing Emily to have no appetite. I also know many other SCID kids with the same issues. Their solution is a feeding tube. We are trying to avoid this route!
My opinion is that this is his way of putting the blame on anyone but him. This way it isn't his problem, it's the neglectful parents that are causing it. It is easier to blame it on a medicine instead of taking the time to search for the real answer.
I know I have talked about this so many times but I am feeling so frustrated and confused. The Dr. explained that if she doesn't gain weight her immune system has no chance of fighting the way it needs to.
For now, she is back on the weight enhancing med that only works while she is on it, gives her stomach aches, and doesn't solve the problem. It is better than a feeding tube though. I am praying for answers...
On a more positive note,
Emily has the thumbs up to go back to school this year! They told me to expect her to get lots of infections. We are talking about Emily here; she is a fighter, I won't be surprised if she stays healthier than all of us!
2nd grade watch out!!!
5 comments:
What a roller coaster for you!! I hate incensitive doctors...i had one work on me 2 weeks ago!
Jill you stay so strong even when the Dr is harping on you..you amaze me!
Soo happy for Em to be in school... what are you gonna do with all your free time?
I love how you write about these experiences. You will be glad to be looking back on these posts! This doc seems impossible, illogical and so detached. We will pray for no feeding tube. I wish there was an easy answer for you. You have been through so much and really shouldn't have to deal with maddening doctors on top of it all.
Maybe Emily will eat your first day back to school cookies. =)
LOve you!! I'm looking forward to time with you. I have a back/neck appointment this morning. Let's get together after that with all the kids and Jeremy.
Yeah for Sego Lily! Rylie will be so excited to see Emily at school.
Good luck with the eating stuff. Remember that you know Emily the best. And like you said, she is a fighter.
See you soon...
I can't imagine having a problem like this one, just so simple Em drink a Ensure anything, I can gain weight just thinking about it. Em looks great and we will just keep trying she is amazing she will do awesome in school. Love you and you are the Best
I really think it is the ADHD medicine. They really make you not hungry at all! Strattera has less side effects that way! I think I would go to a different doctor. Medicines have so many side effects. It sounds like he just keeps putting her on multiple meds to mask the side effects.
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