Seattle Children's Hospital

[Kristie]

Ok here goes... I am going to tell you about my BPI Specialists... Seattle Children's Hospital. They have a BPI clinic that meets for evaluations 4 times a year. We were seen 3 times prior to our move. We do not have any info to share about surgeries because Ian has not needed any so far. I say SCH a conseritive is their approach. Our evaluations went like this. We arrive, signed in, and wait in the waiting room with other BPI kids. We never waited long since we usually had one of the first appointments. We worked with a Therapist (each time we went back we had the same one) for about 45 mintues. Then one of the Doc's came in did some question asking and worked with my son. He left and after a few mintues a whole team came in... more questions and encouraging Ian to show his stuff. We also had many opportunites to ask questions. On our last visit they made Ian a supinator Splint and showed us how to use Kineso Taping for his winging. Two out of the three visits I had one of Ian's regualar threapists come. I could have used one of SCH therapist on a regular basis but I lived 2 hours away. I liked that we went back for evaluations every three months. It was wonderful reassurance that Ian was progressing especially in the all important early stages.
We have used Texas Children's Hospital as a second opinion. I think they are more aggressive in their approach. Which is why I wanted their opinion. I knew if something more could be done they would tell me. If my two hospital did not agree on Ian's treatmeant then I would have sought out a third opinion.
Overall I have been very pleased with Seattle Children's Hosptial. If anyone wants further info please contact me. Although I have moved from the area I would be willing to share any futher info I can!
Kristie

[francine]

Kristie - the invitation is open to you.... let's put your info about Seattle Childrens Hospital on a web page and let everyone know ok? All I need is some text and some pictures.... and tell me what color (or not) you like.

Did you see Sarah's page?
www.injurednewborn.com/sarah/sarah.html

It can be very cathartic as well...

Happy Holidays,
francine

[TNT1999]

Kristie, thanks for sharing your experience. Although we have already found a BP Specialist who we're happy with and we don't live near Seattle, I try to store posts like yours into my memory in case I come across someone in the future from that area. I think what you said makes a lot of sense about seeking two opinions and then a third if the first two don't agree. It's also great that you had a therapist who went to some of the appts. with you. Too bad you couldn't have taken her (or him) with you when you moved. Hah?! Sounds like you found a good one! Well, thanks again for posting. -Tina

[Kristie]

Francine,
I would be willing to have you post stuff about Seattle Children's Hospital except that I don't have any pictures!! I think it is funny that I didn't bring the camera with us because I am the scrapbook queen and am very in to pictures. Anyway when we find a new BPI specalist in our new place I would be more than willing to do a web link. I did see Sarah's page! I think it is great that you are willing to link other pages to your's! I have been so silly worrying about mentioning other places! Sometimes I wonder about myself!
Thanks,
Kristie

[PamS]

Hi-

I am very interested to hear about Seattle Children's Hospital. We live in Westport, WA which is about 2 1/2 hours from Seattle. We are seeing a pediatric neurologist at Mary Bridge Hospital in Tacoma. He has told us that there isn't anyone in the area that is qualified to treat BPI. He has suggested TCH and the Medical College of Georgia in Augusta. We have sent a video to TCH but have not heard anything back, yet and we are going to Boston Children's Hospital for an additional opinion. I have heard good things about Boston and have family in the area for a little extra support, so decided to go there instead of Georgia.

Any more info you could give us about Seattle would be greatly appreciated.

Thanks, Pam

[francine]

Kristie - text is fine and maybe we can find some pictures of the hospital on line and you can send me pictures of Ian - which we talked about last night anyway. We'll make it happen...start writing ok??

Looking forward to this....
it's a wonderful 'awareness' project!

-francine

[Kristie]

Pam,
I responded to you via e-mail!
Kristie

Francine,
I will work on it... I will need my honey's help...
You are wanting a Web page right? That you can link to yours or just something to add to yours? Should I call Seattle to see if they are ok with this?
Kristie

[Jodi]

I do not want to start any problems or anything but I would also like to share our experiences at Seattle Childrens. Our expeirence is quite different.

We live about 2 1/2 hours from Seattle. Our first experiecne w/ Seattle Childrens came when my daughter was 2 weeks old (3 years ago). She was tranferred there from the Hospital where she was born. At this time they told us her arm would completely resolve itself within 6 months. After she was released we continued with therapy and at about 4 1/2 months old our ped. Dr. sent us back to SCH because her arm was made an awful sound and she had great pain. We were seen by a Dr. who told us "Your daughter has erbs palsy! Her arm is going to be like this. Some day she will probably not be able to use it at all."

We set up an appointment for a week later with a different Dr. at Seattle Childrens This Dr. told us that the previous Dr. had given us a "harsh dose of reality."

We then tied again with yet a another Dr. about 3 weeks later I think. Between appointments I had been researching erbs palsy as much as I posibly could. I had met 2 other families in our area. They both took their children to Texas. I showed up at this next appt. ready with loads of questions. Seattle Childrens agreed with Texas that she needed a nerve graft but wanted to wait until she was 9-12 months to do it. The Dr. laughed at me when I mentioned harvesting a nerve from behind the ear. He told me that he had never heard of such a thing. He then sent her home with a brace made out of a hard casting material that was to keep her elbow bent at a 90 degree angle. On the ride home I called Texas and they said "by all means to not use the brace". We flew to Texas about 2 or 3 weeks later for her primary surgery.

A few months after her 1st surgery we were contacted by Seattle and told that they had started a BPI clinic. I was excited. I took her back for an eval. I believe it was their first. It was utter caos. We were there for over 3 hours and we were basically told, It was a good thing we had the nerve graft at 6 1/2 months, and that she looked good. They didn't have a future prognosis, of what else she might need. I continued with Texas sending tapes and we saw Dr. Nath at an eval in Leavenworth Washington. Dr. Nath felt She needed the Mod Quad. I took her to Seattle for her shceduled BPI checkup. They now thought that the Quad was probably the next step, but they had never done one. I was told that they have done different aspects of it and they felt they were capable. I said "No Thanks I don't want my child to be the first." Dr Song was MAD!!! Dr. Allen wrote me a referral to TCH and Dr. Song was mad at Dr. Allen and at us. Dr.Song called Dr. Allen out into the hallway. It was crazy! They couldn't answer any of my questions and admitted after I pried and pried that they had never done the prosedure but they didn't want to give a referral. Thank you Dr. Allen for actually giving me one. I explained to them that with or without the referral she was going to Texas the only thing the referral did was allow our insurance to pay 80% instead of 60%.

I understand that Seattle's BPI Clinic is new and that it is normal to have some bugs to work out. But I found the clinic and the Dr.s to be very unprofessional and not up to speed. During our last conversation with them about 7 months ago I was told that they still do not harvest and use the nerve behind the ear. I hope the clinic is getting better. It would be great to have something closer but I just haven't seen it yet.

Again I'm not meaning to step on any shoes. I just felt our experience should be shared too.

[francine]

All I need is text and no need to ask Seattle - because this is NOT an advertisement for Seattle- it's just YOU telling your story... ok?

-francine