Re: Deianira's Endo appointment and some other updates

[Guest guest]

hey danita!!!

i am so glad your appt with endo went so well!!! and congrates on

the weight gain!! how exciting to have to get new shoes for

once!!! i just had to get christopher 24months pants for the

length!!!! yeah!! sorry i dont know anything about the fusing of

the vertabra or the dislocated elbows if it is related to rss or

not?! good luck in school as well my son is only 3 1/2 so the kids

dont reliaze yet that he is different, atleast not in his class.

and the parents all know about him, there are only 5 kids in his

preschool disabled class.

jodie c.

> 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