Hi, my name is Madeline.  My son is Henry.  He was born on September 3rd, 2004 at 37 weeks.  Although he has received a 'negative' on his Noonan's test, I still think that might be the diagnosis...I have heard that a positive only shows up 30-40% of the time anyhow!!  Henry is 26(1/2 by now?)" and weighs 13# 3oz. on a good day, next day it might be 13# even.  He had a G-tube put in his tummy at 4!/2 months...the doc's thought for sure his weight would boost quickly with that in place...unfortunately, that didn't happen.  However, I can say that for both my husband and I, it has been much better with the tube compared to the NG tube.  Does Logan have either of these?  Ugh.  It's so tough sometimes.  The weight thing is such a stress...Henry is so insanely active that I wish sometimes I could get him to sleep more just to slow down the calories he burns up with his constant leg movement!  But, he seems happy, despite his small size, so this is encouraging.  We take our son to Doernbecher which is a great clinic in Portland, Or.  I too have had MANY issues regarding boosting his caloric intake as well as what type of formula he is taking.  I found that he had difficulty with many ingredients and does best on a natural/organic formula that has equal amounts of nutrition as did the prescribed brand (from the UK for 7 times the cost!) Long story long, I have left the specialists office crying many times, frustrated with their fixation on continually pushing his intake to the point of emisis after each feeding.  I think we have finally reached an agreement of slowing down the increases of both quantity and 'quality' and the doc's seem to be realizing that he is indeed growing...just much MUCH slower than a 'typical' child.  Also, I just got rid of the scale...my son's doctor thought it might help with our stress level...Until now I have weighed him every 2-3 days...Gosh, this experience has been amazing...and we're only 10 months into it!  We also have a daughter, 5 1/2 years old...no syndrome.  (Ironically, she is still in the 100% for height and a very healthy weight!)  Write back if you would like to chat...I could always use someone to talk with who is in a similiar boat.  Take care, Madeline

maria <artononyx@...> wrote:

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

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