ECI/Development questions (sorry so long )

June 4, 2004

Hi all!

I have some questions about ECI & development. I have met with them

twice this week and I am really confused. So far my son is

developing " normally " and reaching milestones..he can hold his head

up steady, push up when on belly etc. They told me that even though

everything was OK now it would still be good to be in the program

just in case he has any delays in the future. I have read alot of

the posts and many of you have mentioned that your kids didn't reach

milestones on time (walking, talking, soft spot closure). Does

anyone have a kid with RSS that didn't have delays? Also, anyone who

would like to share expierences with ECI...that would be great.

The nurse that came out and did the eval said that his pediatrician

put " failure to thrive " on the referral. No one has mentioned this

to me before so I really don't know what that means..his doc has

been telling me that he is gaining ok, just slowly. Most RSS/SGA

babies are below the 5th percentile right? When the nurse plotted

his growth on her chart he is below 5th on height and below 5th on

weight but his height to weight ratio is 75th percentile!! Can that

be right?

At our 4 month check up his pedi mentioned that Isaac would be a

candidate for GHT..how old are the kids when they start this?

I apologize for the long post..thanks in advance for any

advice/feedback.

Mimi (mom to Isaac 4 mos..RSS?, hypothyroidism)

P.S.- We are going to convention and I am debating on taking the car

seat/ carrier. I hate to have to lug it around..can you use those on

shuttles and buses? Seems like a silly question but in Texas we have

public transportation but it is really not used often. (I have never

been on a bus!)

June 5, 2004

I am not sure about most of what you posted but I can comment on the ECI.

I am guessing it is some sort of Early Intervention program in your area? My

son Keigan was enrolled in this when he was about 5 months old. Actually, he

still is He was never behind on his milestones but I think they helped a

lot. We had an OT and a " home teacher " come out every few weeks and work with

him. They had a lot of good ideas on how to encourage and assist him in meeting

milestones. I have no idea if it made a difference in when he did anything but

it was nice to have more input on how we could help him. If they say you

qualify, I would highly reccomend it.

Mommy to Keigan (RSS) 4-15-03 and Tristian 9-26-01

ECI/Development questions (sorry so long )

June 5, 2004

Mimi

Though am an unsure what ECI stands for I can address you question about

delays. My daughter Alyssa is now nearly 31 months. She reached all of her

milestones within the limits of normal. Many were the late end of normal.

For example though she was nearly 8 months before she sat alone and most

mark 6 months as average, 8 monhts is within the " normal " range. I should

point out that Alyssa's head is not, nor has it been since she was 4-5

months old, large for her body. From what I understand this is unusual for

RSS and I think it contributes largely to her being able to reach those

milestones. Her muscle tone is and has been weak, and we did use our

state's infant toddler program for OT from about 14 months until just this

month when she was released! If the ECI is anything like our infant toddler

program I would definately reccomend taking part. I truly believe one of

the reasons Alyssa continued to reach her milestones was due to the

bi-monthly therapy sessions. Our OT simply brought toys and activites to

encourage her development, I will miss the advice and suggestions for

activities for each month. It was wonderful to have her support and

suggestions even just for a short time. AND the best part is the program

will assist us thru the transition to the public school system to ensure all

of Alyssa's needs are met. This alone is worth it to me!!

Sorry this ended up so long, and I'm sure others will respond. Make the

best decision for you and yours and it will be the right one!

Dayna, Mom to Alyssa, 2 1/2 23lbs 34inc.

ECI/Development questions (sorry so long )

> Hi all!

>

> I have some questions about ECI & development. I have met with them

> twice this week and I am really confused. So far my son is

> developing " normally " and reaching milestones..he can hold his head

> up steady, push up when on belly etc. They told me that even though

> everything was OK now it would still be good to be in the program

> just in case he has any delays in the future. I have read alot of

> the posts and many of you have mentioned that your kids didn't reach

> milestones on time (walking, talking, soft spot closure). Does

> anyone have a kid with RSS that didn't have delays? Also, anyone who

> would like to share expierences with ECI...that would be great.

>

> The nurse that came out and did the eval said that his pediatrician

> put " failure to thrive " on the referral. No one has mentioned this

> to me before so I really don't know what that means..his doc has

> been telling me that he is gaining ok, just slowly. Most RSS/SGA

> babies are below the 5th percentile right? When the nurse plotted

> his growth on her chart he is below 5th on height and below 5th on

> weight but his height to weight ratio is 75th percentile!! Can that

> be right?

> At our 4 month check up his pedi mentioned that Isaac would be a

> candidate for GHT..how old are the kids when they start this?

>

> I apologize for the long post..thanks in advance for any

> advice/feedback.

> Mimi (mom to Isaac 4 mos..RSS?, hypothyroidism)

>

> P.S.- We are going to convention and I am debating on taking the car

> seat/ carrier. I hate to have to lug it around..can you use those on

> shuttles and buses? Seems like a silly question but in Texas we have

> public transportation but it is really not used often. (I have never

> been on a bus!)

>

June 5, 2004

Hi Mimi

I, as well, don't have the answers to some of your questions about

programming since I am in Canada.

Adam, my 11 1/2 year old RSS son, reached his milestones on the low end of

normal as well. Most of the milestones were pretty normal, according to the

doctors, but I thought they were slightly slower than my 14 year old

daughters.........but girls usually develop faster so that was the doctor's

reason for being pleased.

We never did any OT speech or PT. My son's speech, again according to me,

was delayed in speaking terms. He was a much clearer talker than my daughter

but I thought he should be speaking in sentences by 2 and he wasn't. In fact

it was that issue that lead us to even discovering he had RSS. I was sent to

a neurologist who dismissed the speech concerns immediately but zeroed in on

the growth.

His head incidentially was in the 95th percentile. But that was dismissed

early on because my head size, Adam's father's and my daughter's is all in

the 95th percentile. He seemed to just " go " right from the start and has

never stopped!!

He never had a feeding tube either. He might have, I suppose, if people had

picked up on the RSS when he was a baby. I use to just feed him around the

clock almost and often had to wake him up for those feedings in the very

beginning.

Does Adam have a mild form of RSS? It's quite possible. I know he does not

have the chromosome marker for it but then again his bone age is 5-6 years

delayed despite being on GHT for 3 years. That seems to indicate a bigger

problem.........most kids are not that far delayed.

We have just reached.........for the first time since he was 3........the

3rd percentile for height. He's at the 12th percentile for weight.

We started GHT when Adam was 8. From everyone on here, I realize that was

quite late however we were not offered the option until he was 7 (a long

story was it was delayed an additional year).

Hope that helps.

Debby

June 5, 2004

Hi,

My 4.5 year old son who we do not think has RSS had hypotonia and Early

Intervention (EI) in MA. Emerence still is not diagnosed but she is SGA and

possibly RSS - we'll maybe find out after we see Dr. Harbison at the convention.

Anyway, EI did great things for my kids - she has gotten 2 PT 2x a week since 3

months old and OT 2x month since 11 months old. She is almost walking and had

hit most of her other milestones late but normal. We are concerned about her

speech but her review is next week and she will phase out we are pretty sure.

However, if the speech doesn't get better she can be reviewed again later.

mom to 4.5, and Emerence 15.5 mo. 16 lb 11 oz, 23 " (SGA)