No my son doesn't have any type of feeding tube. He is gaining all on
his own!! The ped is very happy with his growth so I really don't
care what the geneticist has to say. I had him gaining better before
we packed and moved ... it threw him out of whack ... so now he is
getting back to normal and he'll gain again.
I know several kids that are tube fed and are still tiny. 2 1/2 and
only 21 lbs. 3 years and only 25 lbs. Logan is only 10 months
adjusted age and is over 12 1/2 lbs. Plus he does have the stenosis
and that causes slow growth!!!
Anyway I need to get going. Will chat more soon.
Maria
--- In noonan_support@yahoogroups.com, Madeline mckee <mckeefamily1@y.
..> wrote:
> 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@y...> 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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