My experience with The Cleveland Clinic - long

[Guest guest]

I wanted to relate my experience with The Cleveland Clinic's helmet program...although I need to qualify that it has been two years since we were there. I don't post often but I do read most days.

I went around my pediatrician to look for a specialist for plagio and found The Cleveland Clinic. The cranioplastic surgery department understood and quickly diagnosed an obvious case of plagio. I was glad for that because my ped had me believing that 's head was ok and would round out.

The Clinic offered a clear, plastic helmet that had air bladders that the parent had to inflate in order to apply pressure to the areas that need it. It is a hybrid between the passive helmets (wait for the head to grow into the proper shape) and the active DOC bands or STARbands (bands that apply pressure to increase reshaping beyond what growth produces). I was told that after the child reached 12 months, the Clinic's helmet had little effect as the rate of head growth slowed at that time. was 7 months old at this time.

I found out about the DOC band through an article in TWINS magazine and found the closest clinic in Chicago to be very helpful and cooperative (this was before the DOC band clinic opened here in Cleveland). A huge advantage with the DOC band is that it is an active treatment and can therefore be effective as late as 18-24 months. This is all these people do, so there was a greater emphasis on immediate treatment. We could be in the band in three weeks. This opened a larger window for correction for us.

We quickly learned as much as we could and literally made a list of pros and cons (and the people on this site were VERY informative). I can relate to 's frustration with the Cleveland Clinic as I found we quickly become a number and were looking at a 7 week wait to get a CT scan to rule out cranio. The helmet could not be worn until that time, so we would not be able to get into the helmet until he was almost 9 months old.

In the end, we made 14 trips to Chicago in 4 months and it was the right decision for us. Great treatment, great service, great product and GREAT RESULTS (which was what we were after all along!) Now there is a DOC band clinic here in Cleveland (Straight Ahead in Mayfield Heights) and I have heard great results from and two of my friends that are not a part of this group. I would highly recommend them.

No one can tell which product is best for you and your child. I suggest you make appointments at both places and compare the products, the results and the service. One advantage of the Cleveland Clinic's program is that they offered access to ped specialists for vision issues, hearing issues, and other developmental problems. This is great if your child has other issues. Ask for documentation of results, parents you can contact, etc. Make the best educated decision you can. We are lucky to have the choice now.

Glad you found this group...the active members here really care and understand the confusing days ahead. Don't hesitate to ask any questions.

Best of luck,

Sue Luck

mom to (6 1/2 years), Kayle (4 years), (DOC band graduate) and (3 years and TTTS survivors)

Cleveland, OH