HI
My name is Amanda and my son Dalton has fevers on and off. I go see a
infectious diseases doctor when he gets really high fevers. My son at
time have to get a IVIG infusion. After he gets it the fevers go away.
So if you have that kind of doctor Go see him/her. If you don't then
see if any of your other doctor knows one.


--- In noonan_support@yahoogroups.com, "beacham_rose"
<beacham_rose@...> wrote:
>
> We've been to different doctors & endocrinologists now -- Noonan's
> seems the closest fit for what our 3 year old son has.  My concern
is
> that he suffers from recurring fevers.  (and I mean: recurring, they
> get up to 105degrees & will go away & come back & go away...  this
has
> been on going since he was a few months old)
> Does this symptom affect anyone you know?
>

I have to put in two cents on this.  :)  My husband's family has a
history of dwarfism & noonan's syndrome.  His grandmother was a very
short dwarf and treated as a child at KU med center -- amazingly...
His uncle is short statured and we now think it is Noonan's syndrome
but based on mental retardation its been harder to get information on
him.  Anyway, the uncle was a case study for growth hormone at KU med
center years ago & was supposedly one of the first to try it in the US.
One of our sons was also born there-- soley by coincidence of what our
army insurance would cover.

My point?  Believe me!  Don't feel alone, there are other cases of
Noonans in KS (at least Kansas City, KS) b/c my husband, his brother,
our sons, their father, uncles, grandmother, cousins, on & on are all
living just fine with it.  (exception of one mentally challenged adult
which could have resulted from a complicated birth as well)
For being more local help, we move quite a bit with the army & have
returned from Germany to Texas this year.  So unfortunately I'm not
aware of any groups, programs, etc.  Technically we're still Kansas
residents!  Good luck.

We've been to different doctors & endocrinologists now -- Noonan's
seems the closest fit for what our 3 year old son has.  My concern is
that he suffers from recurring fevers.  (and I mean: recurring, they
get up to 105degrees & will go away & come back & go away...  this has
been on going since he was a few months old)
Does this symptom affect anyone you know?

I posted about Andrew (7months) having constipation problems. Well we
went back to his ped who sent him to the hospital to have another
enema. Now he's been put on Lactulose. Andrew has been choking on the
medicine or not able to swallow it. How did/ do you give it to your
little ones? Do you mix it in their bottle or food?

Also we have been on it for a week now and there is still no change.
How long did it take to start working? How long was your little one on
it?

Thanks, Tracy

Tracy,

We used to give Lactulose to Zack and he had a hard time taking it too.
   I used to mix the dose with the same amount of white grape juice or
apple juice and use a syringe to give it to him by mouth.  I tried
mixing it with his juice in a sippy cup, however, he didn't always get
the amount of laculose he was supposed to have - either spilled the
juice or left it sit too long, so I started with the syringe.  Zack
used to have suppositories and enemas and was also sent to the hospital
for severe constipation.  I am sorry to say that the lactulose never
worked for Zack.  He was on it for 8 months I think, then I begged his
GI doc to give him something better and now he is on Mirilax which
works like a charm:)  It comes in a powdered form which has no taste
and I mix it with one ounce of juice and he drinks it from his cup.

Beth, mom to Zack (3 yrs old, NS and stable JMML) and Ethan (5 1/2 yrs old)
>
> my2heartbabies <my2heartbabies@...> wrote:           I posted
> about Andrew (7months) having constipation problems. Well we
> went back to his ped who sent him to the hospital to have another
> enema. Now he's been put on Lactulose. Andrew has been choking on the
> medicine or not able to swallow it. How did/ do you give it to your
> little ones? Do you mix it in their bottle or food?
>
> Also we have been on it for a week now and there is still no change.
> How long did it take to start working? How long was your little one on
> it?
>
> Thanks, Tracy
>
>
>
>
>

I posted about Andrew (7months) having constipation problems. Well we
went back to his ped who sent him to the hospital to have another
enema. Now he's been put on Lactulose. Andrew has been choking on the
medicine or not able to swallow it. How did/ do you give it to your
little ones? Do you mix it in their bottle or food?

Also we have been on it for a week now and there is still no change.
How long did it take to start working? How long was your little one on
it?

Thanks, Tracy

I posted about Andrew (7months) having constipation problems. Well we
went back to his ped who sent him to the hospital to have another
enema. Now he's been put on Lactulose. Andrew has been choking on the
medicine or not able to swallow it. How did/ do you give it to your
little ones? Do you mix it in their bottle or food?

Also we have been on it for a week now and there is still no change.
How long did it take to start working? How long was your little one on
it?

Thanks, Tracy

They can either do a blood test or a DNA swab. The swab takes 4-8
weeks and the blood can take anywhere from 2-3 weeks. We had the swab
done on Kylie. The blood work done on Jacob and the swab work done on
me.

Once we got the results for Kylie, the geneticists set up an appot for
us to come back and test the rest of the family. When we came back,
both kids had blood work done for bleeding time etc and Jacob also had
blood work done for Noonans. My husband and I had a DNA swab done and
it came out to be that myself, son and daughter all have the PTPN11
gene. We all have a 50% chance of passing it down.


--- In noonan_support@yahoogroups.com, "jessica_doty272000"
<jessica_doty272000@...> wrote:
>
> i am needing a little more info about noonans because the doctors
> believe my son has it and when i looked at the pictures of all of
the
> kids on here he looks just like them but he  hasnt been diagnosed
with
> it yet how long does it take to find out for sure
>

Hi Jessica!
My name is Katie and I have Noonans as well as my son, who is 3 1/2
yrs old and my daughter who is 2 1/2 yrs old. As you can tell for us
it's a hereditary thing. My son gets Education, Vision, OT, and
speech in special needs preschool. My daughter gets Education,
Vision, OT, Behavioral, Speech, PT(I think I covered them all, lol).
Jacob and Kylie also have what is called Sensory Integration
Dysfunction. Sensory Integration Dysfunction is the inability of the
brain to correctly process information brought in by the senses.
Kylie is hypersensitive. The hypersensitive child will avoid being
touched or touching things when at all possible.

My son is still a few months behind but he is getting on track. Same
with my daughter, it's been a long road but now I can concentrate on
making sure they get the best therapy possible and make sure it is
meeting their needs. She rolled at approx. 8-9 months. Didnt sit
until 17-18 mos and didnt stand until 20 mos and didnt walk until 22
mos old. She didnt start getting teeth til 18 mos, my son was 17 1/2
mos when he started getting his teeth in. My daughter has PS & ASD
she is the only one with the heart conditions(she had a balloon
valvluplasty) in Sept 2004 at 5 mos old. Here' more abotu my
children: http://www.babyhomepages.net/imktbear

Katie



--- In noonan_support@yahoogroups.com, "jessica_doty272000"
<jessica_doty272000@...> wrote:
>
> i am new here my name is jessica and my son is 15 months old and
is in
> the process of being diagnosed with noonans but i am concerned
about
> his developemnet does anyone here have trouble with their child's
> developement if so please help me to understand how to help my son
i
> dont know much about this condition so anything will help
>

Hi Chris,
Kylie has problems walking. Her feet turn in and she has something
called forefoot adductus. Instead of wearing braces they have her
wearing a good pair of shoes called Stride Rites. We are suppose to
see if this will help her and if not then we are to pursue getting her
reverse last shoes for her feet turning in. Since the tissue hasnt
grown together to keep her feet permanatly(sp?) in that position it's
best to try and correct it this way before the talk of surgery is
discussed.



--- In noonan_support@yahoogroups.com, "livesimplecolorado"
<red_lionfish@...> wrote:
>
> Hello everyone - quick question - has anyones children experienced
> walking issues? Aaron's foot turns in and sometimes he seems to have
> problems walking or running - like he seems stiff when he runs? We
> have a checkup with his PCP tomm - but i was reading about a
tethered
> spinal cord - and was wondering if maybe this is what he has? Is
> anyone familiar with this - i guess this is another thing that comes
> with the noonans territory.
>
> Thanks
> Chris
>

http://www.noonansyndrome.org/

You can join the listserve group (this is the official Noonan Support
Group webpage) and/or email Wanda to get the parents package.

Hope this helps,

Jenni (mum to Lachlan, 18 months, NS)

jessica_doty272000 wrote:
>
> hi i need the website for the parents package for info about noonans
>
>

hi i need the website for the parents package for info about noonans

Does anyone know how to settle a boy to sleep who is on dexedrine? I have had such a hard time and was wondering if anyone had a solution? I put him to bed around 8 and he is still awake at 11. Being that he is grade 2 this is very challenging. I would really appreciate anyones input...thanks so much

---

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

i just found out that my son really does have noonans and the doctors
think we are doing a great job with him he goes back to the ent
tomorrow do to the fact that his tubes are not working and he is
having to probaly get hearing aides to help him hear i am scared to
think what is to come with all the appointments comimg up and so
forth  ijust hope they help us and teach us how to help our son to the
best of the their ablity.they think he will do good and they are
probaly gonna set up heart doctor appointments for him next so keep us
in your prayers love the doty's

my son dillion is also having walking problems but he has not been
dianosed with noonans yet but we find out for sure in october for sure
and he starts physical therapy tommorrow for his walking when he walks
he looks just like a cowboy lol but i see lots of features of people
with noonans in him.here is a little of the problems he is having he
has wide set eyes,disformed ears, sunk in chest breathing problems and
he is severly delayed in his learning and he is deaf in his right ear
and parcially deaf in the left ear i'm not sure about the heart
problems, but i'm sure he could get them, also he has feeding problems
and he cant talk he use to say 5 words but now he just screams when he
wants something or needs something i am very concerned about his
problems that he is already in first steps all day long and home
school to help him learn he is so dependent on me to do everything for
him it makes me so tired that i cant do anything for my other two kids
ilove my son so much it kills me seeing him hurt like this he crys all
the time and he also has asthema on top of all of this and it makes it
that much harder on me and my husband so keep us in your prayers

Hello everyone - quick question - has anyones children experienced
walking issues? Aaron's foot turns in and sometimes he seems to have
problems walking or running - like he seems stiff when he runs? We
have a checkup with his PCP tomm - but i was reading about a tethered
spinal cord - and was wondering if maybe this is what he has? Is
anyone familiar with this - i guess this is another thing that comes
with the noonans territory.

Thanks
Chris

Hello everyone - quick question - has anyones children experienced
walking issues? Aaron's foot turns in and sometimes he seems to have
problems walking or running - like he seems stiff when he runs? We
have a checkup with his PCP tomm - but i was reading about a tethered
spinal cord - and was wondering if maybe this is what he has? Is
anyone familiar with this - i guess this is another thing that comes
with the noonans territory.

Thanks
Chris

this is jessica again my son dillion holds his breathe alot and crys
his self to sleep at night and he is an asmetic too could this be
because of noonans and does noonans affect the blood pressure in any
way is so let me know how and what to do about it also he just got
aproved for all of his first step programs and he starts physical
therapy tomorrow and he has feeding problems and they first step
therapist say he is so delayed he only has the learning of a six month
old so basically he is just like a baby all over again so please keep
us in your prayers day and night

this is jessica again my son dillion holds his breathe alot and crys
his self to sleep at night and he is an asmetic too could this be
because of noonans and does noonans affect the blood pressure in any
way is so let me know how and what to do about it also he just got
aproved for all of his first step programs and he starts physical
therapy tomorrow and he has feeding problems and they first step
therapist say he is so delayed he only has the learning of a six month
old so basically he is just like a baby all over again so please keep
us in your prayers day and night

i am needing a little more info about noonans because the doctors
believe my son has it and when i looked at the pictures of all of the
kids on here he looks just like them but he hasnt been diagnosed with
it yet how long does it take to find out for sure

Hi Jessica - the test is a simple blood test. It took about 4-6 weeks
for results.

Good luck
Chris

--- In noonan_support@yahoogroups.com, "jessica_doty272000"
<jessica_doty272000@...> wrote:
>
> i am needing a little more info about noonans because the doctors
> believe my son has it and when i looked at the pictures of all of
the
> kids on here he looks just like them but he  hasnt been diagnosed
with
> it yet how long does it take to find out for sure
>

Hi, Jessica,

we are in the UK and they took blood and it took around 3 months for the
result-but that is if they have the ptpn11 mutation..some noonans kids dont
as there is another one now they know of.

My son Tom was diagnosed and has the ptpn11-but the first time the
genetecist saw him she gave us the diagnosis without reserve..he looks like
a lot of the kids in this group and he is like a twin to a couple of them!

Where did you go for diagnosis? and how old is your son?

kind regards, Linda mum to Tom age 4 ns-a little star!!




>From: "jessica_doty272000" <jessica_doty272000@...>
>Reply-To: noonan_support@yahoogroups.com
>To: noonan_support@yahoogroups.com
>Subject: [noonan_support] can anyone tell we where i can get more info
>about noonans and it's symptoms
>Date: Tue, 19 Sep 2006 00:24:58 -0000
>
>i am needing a little more info about noonans because the doctors
>believe my son has it and when i looked at the pictures of all of the
>kids on here he looks just like them but he  hasnt been diagnosed with
>it yet how long does it take to find out for sure
>
>
>

My son Connor is 12yrs now and has always had problems with constipation. Some times it was so bad that he would scream and his face would be purple with the straining.He would also have bleeding from the back passage and a tag would grow.He has had 4 anal stretches done over the years and has tried lots of medicines as well. For years he had lactulose and senna which he took every day. Now he is on movicol 1/2. He takes 2  sachets a day and if he hasn't had a bowel movement after 3 days he takes a Bisacodyl tablet and it sure works right away. The hardest thing that Connor found was trying to keep his water intake up.

 

Lynda mum to Lee 14 yrs and Connor 12yrs.

i am needing a little more info about noonans because the doctors
believe my son has it and when i looked at the pictures of all of the
kids on here he looks just like them but he  hasnt been diagnosed with
it yet how long does it take to find out for sure

Hi Jessica,
Welcome to the group! My son Aaron is going on 22 months. He was just
recently diagnosed with Noonans. He has a PS and had a VSD (4
surgeries and is doing well). Also hypospadias, undesended testes (2
surgeries and is doing well). As far as developmentally Aaron seems to
be right on target. Did everything he was supposed to do. Talks now,
runs, points to things he wants - has normal terrible two temper
tantrums! :)

Take Care
Chris



--- In noonan_support@yahoogroups.com, "jessica_doty272000"
<jessica_doty272000@...> wrote:
>
> i am new here my name is jessica and my son is 15 months old and is
in
> the process of being diagnosed with noonans but i am concerned about
> his developemnet does anyone here have trouble with their child's
> developement if so please help me to understand how to help my son i
> dont know much about this condition so anything will help
>

Hi Jessica! My name is Amanda my son is 18months and has nonnans. He
get PT, OT, and speech. He is still a few month behind but he is
getting on track with their help. It also helps with me working with
him to while we play. Right now we are working on getting him to walk,
he just learned how to pull himself up to stand by the coffee table.
He has come a long way he was about 7 months behind and now he only
few months behind.

Amanda


--- In noonan_support@yahoogroups.com, "jessica_doty272000"
<jessica_doty272000@...> wrote:
>
> i am new here my name is jessica and my son is 15 months old and is
in
> the process of being diagnosed with noonans but i am concerned about
> his developemnet does anyone here have trouble with their child's
> developement if so please help me to understand how to help my son i
> dont know much about this condition so anything will help
>

i am new here my name is jessica and my son is 15 months old and is in
the process of being diagnosed with noonans but i am concerned about
his developemnet does anyone here have trouble with their child's
developement if so please help me to understand how to help my son i
dont know much about this condition so anything will help

i am new here my name is jessica and my son is 15 months old and is in
the process of being diagnosed with noonans but i am concerned about
his developemnet does anyone here have trouble with their child's
developement if so please help me to understand how to help my son i
dont know much about this condition so anything will help

I have some really good news about Logan!

First we had an occupational therapy evaluation done a  few weeks ago and I am happy to report that the therapist says he has no sensory issues and was not going to recommend OT!!!  Woo hoo that is one bullet that missed us!

 

Second, last Tuesday he was loaned a reverse walker.  He took to it really well and can get around with it.  I don't know if the therapist is going to take it back on Friday or if she will leave it.  I also don't know if they will order him one to keep; we'll see.

 

Third, this is the one that has me soooo happy!!  It took him long enough but Logan is now CRAWLING!!!!!  I couldn't be happier!  He's on the move Yippeeeeee!!!!!!!!!!!!!

 

Well I think that's it for now.

Maria

Maria

http://craftsncrosses.bravehost.com

---

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