Day30-Orthopedic evaluation with Dr. Hurley

Erik and Dawn took Analise to Dr. Hurley at the Fontana Kaiser today.  As Erik told me, “it was not an extensive evaluation.”  Dr. Hurley is one of 6 orthopedic surgeons within the Kaiser system in California that treat children with Arthrogryposis.  She treats both the upper and the lower extremities.  

Dr. Hurley casted Our Sweet Analise’s legs, per the Ponseti Method, and she will be recasted once a week for the next 6-8 weeks. The casts cover most of Analise’s legs (see picture).  Poor Analise now cannot move her arms and her legs and she is understandably not very happy!!  Per Dr. Hurley, after the casting is removed, Analise will probably have to wear braces on her legs until she is at least 5 years old.  Dr. Hurley said that Analise has “clubfoot bilaterally” and does not have positional clubfoot.  Positional clubfoot is secondary to crowding in the uterus and not due to abnormal development.  

Dr. Hurley told Erik and Dawn that Analise’s hips may be dislocated and an ultrasound was scheduled for next week.  The previous orthopedic surgeon and occupational therapists did not think that the hips were dislocated.  Even if the hips are dislocated, Dr. Hurley said she would not recommend any treatment at this time for the hips.  (Dr. van Bosse, the lower extremity orthopedic surgeon at the Philadelphia Shriners believes that with children with Arthrogryposis, treatment of the hips begins at about 1 year of age).

Erik asked about the ultrasounds of the arms and legs to determine what muscles were present, but Dr. Hurley told them that she would not do ultrasounds of the muscles because she did not want it to affect the growth plates and stunt Analise’s growth.

Dr. Hurley told Erik and Dawn that in her opinion, Amyoplasia is genetic and research over the next ten years will determine Amyoplasia to be genetic in origin.  (This is something that is not supported by the AMC Support http://www.amcsupport.org/ , by Dr. Judith Hall the geneticist, nor was it something Dr. Tiller, the first geneticist that saw Analise believed).  Dr. Hurley recommended Analise see the geneticist again.

Dr. Hurley told Erik and Dawn that Analise’s trapezius muscle is working.  She said that because her arms and hands do not move at this time, and because of the downsloping of her shoulders, she does not think Analise’s arms/hands will move much in the future, but we will have to wait and see to know more.  Dr. Hurley told Erik and Dawn that it is “a waiting game” with Arthrogryposis and that every child is different.   She stated that Analise’s Arthrogryposis is not a mild case and rated the severity of her condition at a 6-7 out of 10 on a severity scale, 10 being the worst.  

Dr. Hurley told Erik and Dawn that they could be seen at Shriners but that anything they did at Shriners could be done at Kaiser.  She also told them that Kaiser would not pay for any other treatment provided outside Kaiser.  

One positive comment Dr. Hurley had today was that children with Amyoplasia/Arthrogryposis are incredibly intelligent and have high IQ’s, as well as being very social.  

Dr. Hurley told Erik and Dawn that she will try to expedite the CCS referral so that Analise may be able to obtain additional therapy.  

Erik and Dawn are still waiting to hear from the Los Angeles Shriners Hospital evaluation, to obtain a second opinion from them, hopefully on September 15th.  If necessary, Erik and Dawn will take Analise to Philadelphia to be assessed at the Shriner’s hospital there.

Today I called one of the mothers from the AMC Support group, who is going to send me  information on the Philadelphia Shriners, as well as Dr. Judith Hall’s email address so that Erik and Dawn can write an email to her with Analise’s information and photos, requesting her opinion on Analise’s condition and treatment.  

Although Dr. Hurley did not give us the optimistic prognosis that we had hoped for, we believe in miracles, the power of prayer, and the strength of our faith.  We will continue to appeal to God to provide Analise with the most thorough assessment and point us in the direction of the best medical care available.  We continue to be so appreciative of the outpouring of support Analise, Erik, and Dawn have received and know that your collective prayers are powerful.

When I wish upon a star. . .

Day 30

Analise's new casts-She is also wearing her
new pink AMCSupport.org bracelet