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QUESTIONS.... HELP!!!   Message List  
Reply | Forward Message #44479 of 69765 |
Re: [Sotosyndrome] QUESTIONS.... HELP!!!

THANK YOU MONEE.  
 
THIS IS EXACTLY WHAT I"M TALKING ABOUT. We are up at night, he can't sleep, starts coughing trying to get it up, can't get it up and then will end up either throwing up or coughing it up eventually.... My husband keeps telling me to take it him to the doctor I know that he doesnt' have a cold. We keep trying different meds none of which completely help OR they help for about 3-6 hours and I have to either give him another dose or get through it.  I hadn't thought about the tonsils aspect.  I might bring that up next time we are there. THANK YOU!
 
Julie

monee <monee_dartt@...> wrote:

i'm sure you'll get a lot of answers from others here
more knowledgeable, but i know for US, we had
'congestion' problems until recently...

both of my boys would constantly swallow, swallow,
swallow and almost choke up-- kinda like (& this is
gross, but) when you're sick with a head cold or
something and you get a lot of drainage in the back of
your throat and keep feeling the need to swallow hard
to be able to breathe? well, they couldn't sleep well
and always seemed congested. they would even gulp
loud enough to hear it across the room. this went on
all day, every day & every night (especially) for well
over a year.

last month Wyatt & this past Friday Ethan had tonsils
and adenoids taken out. we'd had them on Claritin for
over a year b/c the doctors wouldnt' listen that it
wasn't allergies and it helped to dry them up a
little. well, neither one of them has had a single
dose of allergy meds since their surgeries and are
both doing AWESOME... no more gulping/ swallowing and
are sleeping a lot better (more quietly and
restfully).

anyways, just one possibility/ suggestion.

Monee

--- energy_train <energy_train@yahoo.com> wrote:

> Hi! Does anyone else on here who has a child with
> SOtos or sotos-like
> have problems with lots of congestion and mucus and
> also with feeding
> issues even after the sucking age is over? My
> little guy is 16 months
> and he will not eat anything with texture.
> Everything has to be pureed
> and if it isn't, he will gag and throw up (even if
> he gets the tiniest
> piece on his lip. We are working on it but I feel
> like we are getting
> no where. He eats stage 2 babyfood (certain
> flavors) and will drink
> pediasure from a honey bear. Any ideas from someone
> who's been
> through this? HELP!!!
>
>
>
>
>

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Julie


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Wed Aug 2, 2006 7:02 pm

energy_train
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Message #44479 of 69765 |
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Hi! Does anyone else on here who has a child with SOtos or sotos-like have problems with lots of congestion and mucus and also with feeding issues even after...
energy_train
Offline Send Email
Aug 2, 2006
5:15 pm

Hi! Does anyone else on here who has a child with SOtos or sotos-like have problems with lots of congestion and mucus and also with feeding issues even after...
energy_train
Offline Send Email
Aug 2, 2006
5:15 pm

i'm sure you'll get a lot of answers from others here more knowledgeable, but i know for US, we had 'congestion' problems until recently... both of my boys...
monee
monee_dartt
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Aug 2, 2006
6:32 pm

THANK YOU MONEE. THIS IS EXACTLY WHAT I"M TALKING ABOUT. We are up at night, he can't sleep, starts coughing trying to get it up, can't get it up and then will...
Julie Barr
energy_train
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Aug 2, 2006
7:03 pm

-- There is also a form of asthmatic bronchitis where they cough up the mucus and have non stop spasms. Arlene - In Sotosyndrome@yahoogroups.com, Julie Barr...
abjkv99
Online Now Send Email
Aug 2, 2006
8:05 pm

My youngest Chase (age 5 in September, Sotos Like) is exactly what you are talking about. He no longer coughs all night long thanks to asthma meds. I have...
Robin Cowley
cowley3b
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Aug 2, 2006
10:32 pm

... symptoms....my daughter non sotos was this way she cough so bad with the spasms she threw up also, my sotos son who is severely asthmatic is more scary...
abjkv99
Online Now Send Email
Aug 2, 2006
8:15 pm

Hi- My daughter is five with Sotos and we had feeding issues from day one, she had pyloric stenosis and projectile vomiting and then reflux until age four and...
Nicola Steele
nsteele69
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Aug 2, 2006
10:54 pm

Hi Julie, My niece does not have Sotos, but has many of the things mentioned in the post below below. I would see a gastroenterologist (sp) as many of these ...
Pam
kevsmom72699
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Aug 3, 2006
12:56 am

-my son ate soft foods for years, ( he was tube fed for the first 9 months) he had a high palate and low oral motor muscle tone so chewing food was very...
abjkv99
Online Now Send Email
Aug 2, 2006
8:05 pm

Thanks Arlene, We have the feeding tube too as our first 13 months were horrible. He will now take the pureed baby food and does have a speech therapist. We've...
Julie Barr
energy_train
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Aug 3, 2006
12:47 am

This sounds VERY familiar. My son just turned 2 in June and in Oct. of last year he saw a Pediatric Gastro specialist as well as an Allergist. He was...
lisa woods
spencerzmama
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Aug 2, 2006
10:19 pm

Julie, At the conference one of the things that the behavioral psychologist suggested was that we tape any behavior that is abnormal for our children. That...
Kellie Siers
sierskellie
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Aug 3, 2006
2:58 pm

Another thought might be to ask that a sleep study be done. That way a professional would be monitoring him all night and you would have proof of what is...
Kellie Siers
sierskellie
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Aug 4, 2006
11:03 am

Me "Ellie-Boo" who is now four, had all of the problems you listed, in a big way. She had horrible congestion....sounds like she was breathing mucous instead...
Kristy
kristyofnj
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Aug 6, 2006
3:42 am

THANK YOU KRISTY! I have never heard of the vita-mix blender. I just went to Bed Bath and Beyond and bought a Magic Bullet to do that exact same thing- I got...
Julie Barr
energy_train
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Aug 6, 2006
4:09 am

Hello! We have been out of town and I am just getting caught up on email. Riley 3 1/2 has, since birth, been congested. He always sounds like he has pnemonia....
Wards
4wards1@...
Send Email
Aug 8, 2006
2:43 am

Hi! What are e-stem treatments? I've never heard of that. Jaden can throw up (very well) and that' s usually how the mucus finally gets out but there are...
Julie Barr
energy_train
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Aug 8, 2006
3:16 am

Hi, To give you our experience with church preschool... In our case, I sent Sylvie to the school where her big sister had gone. She was familiar with it and...
paigelw@...
paigescooter
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Aug 8, 2006
3:47 am

Thank you Paige! I will check it out this week. Kathy ... From: paigelw@... To: Sotosyndrome@yahoogroups.com Sent: Monday, August 07, 2006 8:45 PM ...
Wards
4wards1@...
Send Email
Aug 8, 2006
4:18 am

Hi, Public schools have to take a child who is not potty trained regardless of age…but I don’t think private schools need to by law. Some are more willing...
Pam
kevsmom72699
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Aug 8, 2006
5:29 pm

The e-stem treatments are electrodes (sp?) that they place on his throat. They use two at a time, one on either side of the front of his neck. They alternate...
Wards
4wards1@...
Send Email
Aug 8, 2006
4:36 am

I was just amazed at how much green and yellow boogers (sorry) my son produced when he was an infant and toddler. NO problems now that he is almost 9. ... ...
cschulz1114
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Aug 18, 2006
3:19 pm

Hello! My son did the same thing. And now he is 7. There are still certain foods he chokes on. Like spagetti, or any noodle. Also he ate soft foods till...
marsha canull
truckdrivn4f...
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Aug 19, 2006
4:04 pm

Hi MARSHA, THanks so much! My hardest thing is that Jaden won't let it in his mouth. He turns his head before it even touches his lips. Once it's in there, he...
Julie Barr
energy_train
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Aug 19, 2006
5:45 pm

I think many of us have been thru the feeding issues. My daughter moved on slowly to regular foods at age 2 but is still only eating minced or soft meats. The...
taina.hickey
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Aug 25, 2006
10:43 am
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