Awww Maria,

Firstly welcome to the group!! My son was diagnosed with NS at age almost
3years in April-he seems healthy most of the time-ear problems and slow at
getting around-he is now 24llb but was similar to your son at age 1. He
still wears 12/18months clothes! He is as bright as a button
mentally-advanced I am sure..I have four other kids none of whom have NS and
it was such a shock when I got Tom's diagnosis. Is Logan quite healthy? Tom
sees a dietician and will have none of the high calorie food so has gained
weight only with our perseverance! I am told the tide can turn and eating
can become more 'normal' around this age and it is getting betterday by day
so there is hope!!
When you feel ready tell us more about your family-we are here to help..

kind regards, Linda

>From: "maria" <artononyx@...>
>Reply-To: noonan_support@yahoogroups.com
>To: noonan_support@yahoogroups.com
>Subject: [noonan_support] Hello - son just DX'd
>Date: Wed, 13 Jul 2005 15:18:56 -0000
>
>Hi my name is Maria. My son is Logan. He was born on June 5, 2004
>at 29 weeks. He is now 13 months old / 10 months adjusted.
>
>He was just diagnosed with Noonan's yesterday. I am having a really
>hard time dealing with this. There is alot I can say but right now
>just don't have it in me (things like my family size etc). One
>thing I do want to say is: I don't understand how they can say my
>son has Noonan's but my daughter doesn't (if you compare pictures of
>them at the same age they are like twins!! when people see them
>together they are taken aback at how alike they look now! - she also
>is super small for her age weighing in at only 68# at almost 12
>years).
>
>Anyway, the geneticist was really concerned about his size. He is
>25 inches long and 12# 12 ounces. The pediatrician is quite happy
>with his growth! In reading some of the past messages by members of
>this group I am having a hard time understanding what the big issue
>is with his size??!!
>
> posts like: "You know what? I think it is possible...I feel the
>same and we are approaching two years old in August! Zack still
>feels "new" yet "old" at the same time. I do have to get out of one
>bad habit though...since he is so small (26 3/4inches), I treat him
>like he is still a baby but we are pushing the terrible twos! It is
>hard to remember that at times. We just saw the pediatrician today
>for a weight check and he is back down to 14 lbs, 5 ozs. He had a
>bout of constipation over the weekend so there goes any weight
>gain."
>
> and: "He is still fluctuating between 13 lbs 13 ozs and 14
>lbs. He has been this weight for a few months now." (*21 mnth old
>Zack)
>
>Anyway they want me to take him to a GI and nutritionist. Thing is
>I know he was gaining well in April and first 1/2 of May cause we
>had boosted his calories. Then we found out we were moving in 2
>weeks and were packing like mad. At that point he dropped his
>intake of calorie boosted food to only a couple of spoonfuls per day
>(previously he was eating several ounces daily). He continued this
>until just about 3 weeks ago and has steadily increased his intake.
>In fact he just gained around 8-10 ounces in 10 days (I give a range
>cause his weight varies by scale).
>
>How do you deal with these docs who want to push calories? And
>honestly, I can see boosting the calories and having him gain weight
>but he can't eat only high calorie foods for the rest of his life?
>
>Any advice or words of encouragement would be very appreciated.
>Maria
>
>


Linda