Deianira's Endo appointment and some other updates

[Guest guest]

Hi all,

Daya saw her endo this past week and the appointment went REALLY

well! We had a great heart to heart chat and he sat beside of me to

review some info in her chart (rather than standing above me or

staying distant). Last year, her bone age was 5y 9m and this year it

was only 6y 5m. Because her increase was so little, he does not want

to start her on the Arimidex - BUT is WILLING to start her when her

bone age is around 7 to 8 years of age since RSS kids normally start

puberty early. He increased her GH and once we get her GHF1 back, he

will consider increasing her to the rate Dr. H requested at the

convention! His concern is that the last GHF1 that was done showed

her close to the maximum levels, so he wanted to get this one done

first. If she is mid-65% range, then he will increase more

aggressively! YES! Although, he did say that too much GH can cause

Diabetes... Any confirmation on this?

I can say that if there are any midwest/great lakes families that

are searching for an endo that is progressive and willing to listen -

Dr. Anzar Haider at Akron Children's in Ohio would be one of those

individuals. I was extremely impressed with his knowledge and

willingness to talk to me like I am an intelligent person! His

mannerisms with Daya were great and it seems he has a number of

other RSS patients as well!

Since we started Daya on the caloric replenishment and meds that Dr.

H. recommended, Daya has gained a total of 7.5 pounds in the last 6

weeks and almost a FULL centimeter in height! She even had to get

bigger shoes for the first time in a year!

She started a new school this week and is faring WONDERFULLY! I am

going into her class next week to talk to them about RSS and her

other treatments such as the G-Tube and shots. The Endo just ordered

her one of the " cooler " Genetropin pens that have the decorative

snap covers, so I am hoping that she gets it before I go in to her

class. One thought I had to convey information to the kids is that

certainly RSS means Silver Syndrome, but in my world, RSS

means RARE STRENGTH SUPERSTAR! Anyone else have some feedback for

teaching to the class?

Also, here is something interesting to note. Daya does not have any

other medical problems except for what is related to RSS. I took her

to her Ortho this past week as well, and we did get a confirmation

that both of Daya's elbows are dislocated, rather than the norm of

only one. They cannot be corrected surgically due to the placement

of the bones joining the elbow and he feels it would only create

more issues for her. Currently, she cannot rotate her arms so that

her palms face the ceiling.

In addition, I noticed that Daya cannot " look at the sky " by bending

her head straight back. Upon my prompting, the doc took an x-ray of

her neck and found that the 2 vertebrae closest to the skull are

fused together and to the skull, therefore causing the limited range

of motion. Anyone heard of this before in RSS kids? He did say that

this should not cause her pain given that it has been there since

birth.

All and all, She is doing really well and cannot wait to go to

Chicago next year!

Hope all is fine and sorry so long...

Danita

Mom to

Cory - 11 year old Tourette's, childhood migraines, non-rss

- 11 year old non-rss, possible ADD

Deianira (Daya) - 9 year old IUGR, RSS, G-Tube, Assymetry

- 8 year old Asthma, Herschsprungs - corrected by surgery,

non-rss

Blaine - 2 year old HSP (Henoch-Schoenlein Purpura), non-rss