DownSyn Forum

cymorales · Posted: December 15 2008, 1:44 AM Post subject: Going down the aspirating path

I was just wondering from those of you who's child aspirates or aspirated, when did they stop? This thickening stuff can't be good for him! It's been almost 2.5 years....

_________________
Carmen
Mom to---- Jayvier(13), Hailey(9) and Jaemen(4 DS)
http://mycrazylife-carmen.blogspot.com/

"...be content with what you have, because God has said, Never will I leave you; Never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid..." Hebrews 13:5-6

kris10z · Posted: December 15 2008, 7:34 AM Post subject:

I would LOVE to tell you, but we are still there too! We have graduated down from honey/pudding to nectar/honey. So, that's good. Have you looked into VitalStim therapy? That's how we got down a little.

I would just like to be able to leave the house without wondering if I forgot the hydra-aid or not. Rolling Eyes

_________________
Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
Taking the Step to a Healthier Self with Juice Plus+
www.fillthegap-juiceplus.com

Amy · Posted: December 15 2008, 8:14 AM Post subject:

I don't know about the aspiration stuff except to tell you that Kenn still needs it too and she's 4!

That boy of yours needs to model. Have you ever entered any of your pics of hJ-man in modeling contests? Ya'll need to take him to an audition. Good grief he's cute.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

lespring · Posted: December 15 2008, 8:47 AM Post subject:

Angela was 3, but only learned to swallow safely with INTENSIVE therapy. She still has an unstable swallow, meaning she swallows ok, but it doesn't take much to cause a problem. ie if she's sick her swallow becomes uncoordinated again.

The muscles needed for swallowing are the same ones needed for speech, particularly the back of the throat sounds like g, k, ng, etc. Kids who have problems swallowing usually (not always but usually) have trouble saying those sounds in the middle of words as well.

_________________
~Leah~

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And don't forget to visit MINE!
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mom to Rob 27, Noah 26, Tyler 24, Bryon 24, Angela 17 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 8 (DS adopted from Serbia 12/2011, AAI non-fusion), Abel (DS adopted from Serbia 4/2013)

cymorales · Posted: December 15 2008, 5:34 PM Post subject:

Thanks for the help guys, I'm just frustrated...I forgot Jaemen's hydra-aid the other day and he had to go without a drink for a few hours...finally I broke down and gave him a sip of my drink, for him to sputter and choke and almost throw up...sigh...I know things could be worse. It's just scary all the time. If he's at school what's the first thing he goes for? Oh yeah that would be the paint...not to paint with but to drink...or the water fountain, or the teachers coffee...or or or...I just feel like I'm constantly watching out for him to choke and us be in the hospital with pneumonia...

Kris...He went from honey to pudding to yogurt so we're all over the place! Whats that VitalStim?

Amy, thanks girl...yeah he's cute but he's rotten to the core! Smile

Just the way I like'm Smile

I didn't know Kenn needed her liquids thickened.

Leah, what kind of therapy did you do? It's funny you talk about speech...he can't do k's he can do g's and i don't know if he can do ng's I'll have to see...he just really started talking a few months ago and I wondered if his swallowing would inhibit his talking. Sounds like it might...he has a lisp with s's...interesting!

_________________
Carmen
Mom to---- Jayvier(13), Hailey(9) and Jaemen(4 DS)
http://mycrazylife-carmen.blogspot.com/

"...be content with what you have, because God has said, Never will I leave you; Never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid..." Hebrews 13:5-6

lespring · Posted: December 16 2008, 9:05 AM Post subject:

We had DAILY sessions with a feeding therapist at the hospital for several months. Before even putting anything up to Angela's mouth for her to drink, they would massage her neck/jaw area, by hand and with a vibrating thingy (looked kind of like an ultrasound transducer). This was pre-vital stim days. With vital stim they use small electrical impulses to stimulate the muscles used to swallow. Here are pictures of patients getting vital stim therapy
http://images.google.com/images?q=vital%20stim%20therapy&ie=utf-8&oe=utf-8&rls=org.mozilla:en-US:official&client=firefox-a&um=1&sa=N&tab=wi

With Angela, because she aspirated even pudding consistency on EVERY swallow, she had been on her gtube for 2 years, with NO LIQUIDS by mouth for those 2 years. Not only was it necessary, but a benefit I didn't know about was it allowed her to completely forget how to swallow liquids. Since she didn't do it safely, this was a good thing! Definitely not a road you want to end up going down though! Rolling Eyes

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 27, Noah 26, Tyler 24, Bryon 24, Angela 17 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 8 (DS adopted from Serbia 12/2011, AAI non-fusion), Abel (DS adopted from Serbia 4/2013)

pookeymom · Posted: December 16 2008, 5:30 PM Post subject:

We too have been thickening liquids for almost 3 years now and no end in sight as of yet. We use Thick-It and we have tried to wean them off (on our own) and they choke and cough and its discouraging.

We did Vital Stim for 17 months and I cannot tell you in all honesty if it worked it not. They improved their swallow a bit but in that time frame was it the Vital Stim therapy or was it just them getting older and stronger?

Vital Stim is a little shock therapy they do to help stimulate and contract their swallowing muscles, its not painful. The boys ate and played and crawled around with it on their necks. My boys are also completely non-verbal, they say nothing yet. I'm hopeful that they will be able to come off the thickener someday soon as well, its another thing to have to remember to bring along when you go anywhere...

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Stacy, Mom to Tristin 12, Camille 8, Elijah 6, Caleb and Isaac 4

CAmommy2KJ · Posted: December 20 2008, 3:03 AM Post subject:

Kennedy was on thr thickener for about a year and we slowly weaned her off of it. She does fine now.

_________________
~Renee~
Mommy to the Special K's:
Kassidy (11.4.99), Kameron (11.3.01), Kennedy (5.16.04)(Ds and AML and AAI), and Keeghan (5.1.07)

D is for Down syndrome
Kennedy's CarePage Site name: KennedyGarcia
Down syndrome awareness products!
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cymorales · Posted: December 30 2008, 2:54 AM Post subject:

Renee, How did you wean her off of it? We were in the hospital on Christmas with Croup, pneumonia and dehydration...grrrrr....I'm so afraid that if I don't thicken to yogurt he's going to aspirate and we'll be in the hospital. I guess I'm just worried, because it's gotten worse not better... Sad

_________________
Carmen
Mom to---- Jayvier(13), Hailey(9) and Jaemen(4 DS)
http://mycrazylife-carmen.blogspot.com/

"...be content with what you have, because God has said, Never will I leave you; Never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid..." Hebrews 13:5-6