Nathan has been diagnosed with dysphagia (since may) and i was wondering if anyone has seen any forums on it ANYWHERE. a google search turns up nothing. :(

My daughter has Dysphagia since she was 4 weeks old if you have any questions ask away!

i'm morso looking for a dedicated forum for dysphagia. Just to see if there are any other ideas about what i can do for Nathan besides thick feeds.

I know nothing about it. I'm sorry that I can't be of more help. :oops:

Tiffany -

Emma was just noted (verbally) that she may have dysphagia. She is also seeing a speech therapist. When they come late next week, I can ask them if there are any "exercises" or things to do if you'd like.

They did recommend the thickened feeds. Water and juice with thick it....formula with cereal. She did okay with baby food and they said to continue the puffs and other soft dissolvable items (like graham crackers and such).

I have never seen a forum about disphagia........I actually asked about it sometime last year because my daughter was diagnosed with that and we used Simply Think and Thick - It for her formula. Let us know.....maybe ask Roni how we could start one up?

I would be interested in a forum like that too Tiffany. The times I have googled dysphasia I didn't find anything like that either.

Yea. I know it.

Its interesting that there is NO internet forum, for this. I would think there would be. I mean, this is something that our children could potentially have FOREVER. Sigh.

Dysphagia is just a fancy term for a swallowing disorder. It is a general term to describe problems with the feeding process from any one or more of the phases of the swallowing process starting with the oral (mouth) phase l(i.e. sucking, chewing) pharyngeal (i.e. triggering the swallowing reflex and the food/drink passing through the throat) and the esophageal phase (i.e. moving through the esopshagus to the stomach).

Some of you are spelling it wrong - Dysaphasia is another term for Aphasia which is a language disorder that occurs when someone has a stroke.

Here is a link to the American Speech Language Association (ASHA) website that can give you a good explanation of dysphagia in children. http://www.asha.org/public/speech/swallowing/Swallowing-Disorders-in-Children.htm

Excercises are not always effective in treating dysphagia. Sometimes dietary management like thickening liquids is all that is required. Many infants with dysphagia will grow out of their swallowing issues. If you feel that swallowing issues need to be addressed further talk to your doctor about seeing a speech language pathologist.

Posting your concerns about dysphagia in the Feeding forum would be the appropriate place as dysphagia would be considered a feeding disorder.


Take care,
Pam Tyler MS CCC SLP

Oh good. You posted everything that i was taught.


:party0049:

i guess i'll just have to wait it out then! ;-)

Yes, having repeated MBS studies done is a way to monitor his swallowing to determine if he continues to need thickened feeds.

At this rate, we are doing them every 3 months. We've had 2 done, and we are scheduled for our third.

first MBS result: Nectar consistancy
Second MBS result: spoon thick (two honey hydra-aid packets) per 4 oz. So i'm assuming when i start 8oz bottles soon, that i would use 4 packets correct?

Everyone is shocked to see him get WORSE.


Thanks!

Just before you start the 8 oz bottles just double check with your doctor but if you need the 4 packets to make spoon thick then unfortunately 4 packets it is.

I know it is frustrating to hear that his need for thickness increased between the first and second MBS but hopefully you are preventing the likelyhood of aspiration which could bring on a whole new set of problems.

I totally Agree. Thank you SO much! ;-)

My Husband, joking, keeps on saying, oh come on, just stop the thick feeds, and give the kid some food (he hasnt started solids)

I'm like LOL, and YOU sit with him in the hospital, when we have to go in there AGAIN.

He shuts up right away! LOL

But on a side note, My dad (who sees nathan regularly) gave nathan just WATER one day, and there was OBVIOUS signs of a "bad feed" he was SOAKING WET!! So ive come to the conclusion that i need to get Nathan a medical bracelet, just in case ANYTHING were to happen to me. I think i'm going to simply put "No liquids" that way, if an ambulance crew came on hand, they could do IV fluids or whatever they would do.

Because you have to assume that the GENERAL public would NOT know what "no thin liquids" meant.

Thanks for being a GREAT help :)

Let us know.....maybe ask Roni how we could start one up?

Ask and you shall receive!!!!


A new forum has been started.

Best wishes

There is a typo in the forum title. The y and s are switched.

Oh shoot! Thanks for catching that Pam, I never even noticed. Tht's what I get for doing ten things at once. :oops:

Thanks for responding to member requests soooooo quickly, Roni! This should help quite a few of our members get better informed about their children's issues.

Thanks Roni, your the best:D

Thank you for this forum Roni. With Emma now possibly having this (I won't have the official report from the video swallow study for awhile yet), it will be great to have information on this.

Your local children's Hospital should have a specialist that works with dyshpagia. I live in the northwest and travel to Seattle Children's Hospital; one of the area's best works there--worth the drive for us. The information/pamphlets she has handed out has helped me tremendously--more to understand why?
Taryn was diagnosed with severe dysphagia at four weeks old. She is tube fed(aspirated on thin and thickened liquids)and needed regular suctioning of her secretions---she was unable to handle them.
There are different orgins/causes for dysphagia----through testing(ENT visits, video fls, pulmonologist visits, neuromuscular, etc.)they have said Taryn is one of neurological origin--most likely problem with the swallowing muscles understanding the brain properly(mom language). She is getting much better, hang in there. She only needs to be suctioned when she has a cold(excess fluids)or bad DGE day. Don't want to ramble on, so please feel free to email and I will assist wherever I am able---I have made myself a mom expert in this field----but hang in there, they do get better.
Susan