Our visit to Boston to see Dr. Foster
Wow, Boston is an awesome town! We had the best time of our lives and couldn't believe how nice the people of Boston were. We're from Chicago and I wish they were as
friendly here as in Boston. If I had to pick another place
to live it would be there and believe me I have traveled
to many places. We stayed at the Hyatt Cambridge ($60 on
priceline). I told them why we were visiting and they
upgraded us to a room with a balcony and view of the
Charleston River and Boston Downtown at not additional charge. Everyone at the hotel were great. They had
a free shuttle service that brought us to the different
T stations which was fun to ride. Best place to eat
was Legal Seafoods and best attraction were the Duck Rides.
We visited many places in the three days we were there.
Anyway, on to our visit with Dr. Foster. We ended up
being there for 4 1/2 hours. I was never so nervous in my life. Everyone was great. Dr. Foster said that her
case is a "mystery" so far. Blood test results won't be
in until a few weeks. But good news is that she had
no cells!!! He recommended that she stop the one drop
per day and see if current dose of mtx will keep her
quiet. If so, stay the course for 2 years, otherwise
next step is cellcept. They took over 150 eye pictures.
Showed that she has scarring from previous inflammation
but it's in the area that does not affect her vision,
thank God. No signs of glaucoma, cme or cataract formation.
Now I need to talk to her current doctor here in Chicago
and discuss our visit to Dr. Foster so they can collaborate
together to get my daughter into durable remission.
So until next appointment in about a month, I will just
hold me breath for now. Jamie is very excited about
not having to do the drops. Also, everyone at the
office said she was so brave with the blood tests
and eye pictures and said she was better than most adults.
That made her smile. God, we love our children so much don't we!!!
Your note made me smile! You had a wonderful appointment, and you also had some fun, too! I'm glad to here you had good luck with priceline. I will try them again sometime. Hotwire is another good one. I've stayed at that hotel, and it is very nice. Good for you
Let us know after your next appt. how it goes. When you go in the winter, take her ice skating on frog pond. It is so beautiful, and inexpensive as well...
Jamie and Rebekah are about the same age. Rebekah will be turning 12 soon. How long has Jamie been diagnosed? It sounds like she is doing well. Did you fly or drive to Boston? If you drove about how long did it take? Just curious....Sounds like the appointment went great. Are you going back to Boston for your follow up appointment, or just back to your doctor in Chicago?
Re: Our visit to Boston to see Dr. Foster
Jamie was diagnosed 4 years ago. She has never been off
of steriod drops so I'm very nervous. We flew to Boston.
I'm hoping that Dr. Foster can collaborate with her
current doctor in Chicago. That is the plan for now
and we'll see how it goes. Yes, she is quiet now but
I've learned not to get my hopes up. She does well on
the methotrexate (no side effects) but giving her the
shot is very difficult. She cries most times. Dr. Foster
said that he thinks that would be reason enough to switch
to a new med, but I'm not sure if this one is working so far. I really wish there was a way to give her the shot
without causing pain. It's not the needle going in, it's
the liquid once it's underneath her skin. She won't let
us put ice on it either. That is the most frusturating
part of this whole thing. I think I've covinced her tonight
to sign up for the kid's forum so she can ask other
kid's advice. I really hope some of the meds in research
are going to be better for the future. We did meet an
adult at his office who is on the Novartis study group
and said it was going well. I'm not sure what that
study is, I didn't get a chance to ask.
Re: Our visit to Boston to see Dr. Foster
the investigational study with novartis is called the 'AIN457' study. it is a new biological medication that works by blocking the IL17 cytokine - an entirely new way of treating inflammation. many autoimmune inflammatory conditions have this cytokine as a major part of the inflammatory cascade. it is present at a much higher level than TNF A which remicade and humira act on. some forms of uveitis don't have TNF A present. I asked DR Foster about IL 17 blocking drugs and so far the AIN 457 trial is going very well. I don't know about side effects with this so lets hope it doesn't have anything serious with it that would stop any phase I trial in the future.
Re: Our visit to Boston to see Dr. Foster
MTS, if injected into fat, it ununoticable. Most kids don't have much, sometimes on the tummy. Also, injecting very slowly. In muscle, it stings. Sticker time, and pick your present.
Re: Our visit to Boston to see Dr. Foster
Thanks Liz, I'm sorry I missed you on Thursday. I saw
you walking into a room but didn't see you again after that.
You must have had a very short appointment. Hope things
went well.
So the fattiest part of body is best for injection? Where
do most kids get their shot? I know her arm hurts and
now her thighs stings too. There's got to be an easier
way. Dr. Foster didn't really give us any advice on it
other than saying to try some ice which she refuses. Stubborn kid.
Re: Our visit to Boston to see Dr. Foster
Rebekah has been getting shots since October...It was just has bad for me as for her. Actually, the first month of shots I problably cried worse than she did. Our doctor perscribled EMLA cream. It is a numbing cream that works well from what Bekah tells me. We also will use it before we go to have blood drawn. Another thing Bekah and I have discovered is that the MTX WITHOUT perservatives burns much more than with perservatives. I asked our rheum and she said it did not matter so I always make sure I ask for with perservatives. Also, make sure that when she is getting her shot she relaxes. Bekah prefers to take hers in the back of the arm. I know that Bekah would not mind at all talking to your daughter. She would probably love it. If you would like to exchange phone #'s let me know.
The longer you leave the Emla cream on, the better job it will do to numb the area. We would put a big glob on, then put a piece of saran wrap (cut in a small square) right over it, and wait for at least 30 minutes.
We always used the back part of her arm, switching to the other arm the following week. This way she didn't have to look, and rarely felt it.
Re: Our visit to Boston to see Dr. Foster
She won't let us put on the cream, she hates it. It's not
the needle going in, she doesn't mind that, it's the liquid
that stings her. I'm going to put all the ideas I've been
told by this post together to figure out a strategy. I'm
going to ask the pharmacy about the preservatives. I think
we're going to switch to the arm. Her thigh has no fat
and I think that's why it feels bruised after. She
does have to look though, or she won't let us do it.
She's the same with blood tests, loves to look. I told
her she should be a doctor. I'm going to encourage her
to talk to some of the kids. Thanks.
Re: Our visit to Boston to see Dr. Foster
My daughter would love to have another kid join! I think that is a great idea. You daughter is a lot older than my girl was when she was on the methotrexate. Maybe she would feel better if she gave herself the injection? Help her to feel more in control? If that is the case, she could inject her tummy. She could grab some skin, and put it away, just a bit. My daughter had control issues with the drops. At age 7 she told me she was putting her own drops in. It just made her feel better about the whole thing, and she did a great job as well.
Re: Our visit to Boston to see Dr. Foster
What's the best way that my daughter can obtain a password
for the kid's forum? She clicked on the email link
but hasn't received one yet.
Re: Our visit to Boston to see Dr. Foster
Hi. I just figured out what happened. Sorry her request didn't reach me. Please ask her to click on the link again and she will reach me.
Re: Our visit to Boston to see Dr. Foster
We don't have outlook express so the lynk didn't work.
She sent you an email from her gmail account. Did
you get it?
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