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We have recently finished all the testing we can do at this point on my 9 month old daughter, and I am considering doing the second opinion program through ULF. Does anyone have any experience with this program? Was it helpful? Worth the money? Did Dr. Van Der Knaap also look at your child's records? We're just kind of stuck on what to do next since we have no answers yet. Thanks.
Hi there,
I have 1st hand experience of the 2nd opinion program.
As far as I know it is an annual service. Records are forwarded to the ULF who pass them on to the various doctors who will be attending the July meeting. They have a chance to familiarise themselves with the data available.
At the July meeting they would interview you and the patient (assuming the patient can travel. My dependent did not) and then come back with their recommendations.
There were several doctors around a horseshoe table. I was at the open end answering questions. There were also many less qualified but interested parties in the room for the learning experience.
I believe it is a wonderful opportunity to get several experts looking at your case at the same time. Almost impossible to achieve otherwise.
Trick is to get data to them early enough to be circulated. I found the specialists very approachable and giving of their time at this event where there are no distractions from their day practices.
Several families attended and were regulars for a number of years.
The interaction and sharing of experiences, solutions, ideas and camaraderie with others in the same boat was also very restorative. It gave real muscle to the mission statement : You are not alone.
Cliff
hi
we have had 4 neurologists with 3 differant diagnose,leukodystrophy,pelizaeus merzbacher,white matter diaseses, ( no one knows) he has had 3 MRIS. so all results have gone to Dr van der knapp
we are waiting for a reply.
goodo
I don't yet know the answeres to your questions, but I have contacted the ULF regarding the second opinion program. They sent me a packet of information and some forms to fill out. They said to fill out the forms, collect all of my son's records, MRI films, everything we can get on him and then send it and the processing fee back to them. They will then send out the information to all of the different doctors. They didn't mention any doctors by name, but I got the impression that his information would be sent to all of the doctors on the ULF team which would include Dr. Van Der Knaap. I hope I am right in that thinking. They did say that it could be up to 6 months before we hear any results. They didn't even mention the conference in July. I am hoping to go to that with Bryce when the time comes, but I figured I would get a jump start on this since the entire team of doctors we are working with here claim that he has been tested for every kind of leukodystrophy and still have no idea what else to do for our son. AND I am not OK with the answer of "we'll just wait and see what happens". There must be someone who knows something about this out there. We just have to keep praying and looking! Good luck to you on your journy!!! Your daughter is adorable!
Thanks for the replies! In response to 2tired2think, I asked them specifically about Dr. Van Der Knaap and the person I talked with said she would be a part of the group reviewing the records. I also got the "wait and see" and I know the doctors do all they know how to but I still don't feel as a parent I can accept that. We have to try all that we can. I also plan on going in July to conference and hope I can bring my daughter. I wish you the best of luck as well. I hope your little boy is doing well.
OK, That's fantastic. Thanks for letting me know. I agree, we have to do what we can. I'm really looking forward to that conference. I just wish it was sooner. Maybe we'll get to meet you and your daughter there.
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