Dysphagia | Imamother

anonymrs

Tue, Jun 22 2021, 2:28 pm

amother [ OP ] wrote:

Trying to get swallow study but that’s also taking forever. Has an appointment by ent next week. Tried reflux med and it didn’t make a difference and the stronger meds weren’t approved by insurance yet but I’m not inclined to think that’s it.

What about tongue tie?

amother

Tue, Jun 22 2021, 4:17 pm

anonymrs wrote:

What about tongue tie?

That’s why I’m taking him to an ent next week. He does have a posterior tongue tie but many people who evaluated him said he has good tongue movement so I don’t know. I would clip it but I think it’s something else.

amother

Butterscotch

Tue, Jun 22 2021, 4:29 pm

Posterior ties can pull through the neck and esophageal musculature and fascia You can join the NY/NJ tongue tie facebook group. There are several oral myofunctional therapsits, SLPs and body workers like cranio sacral therapists that can offer some support.

amother

Butterscotch

Tue, Jun 22 2021, 6:32 pm

amother [ OP ] wrote:

Make sure the ENT is very knowledgeable in tongue ties. Many know tonsils and tubes but arent well versed in tongue tie, especially posterior ties. They don't always understand the impact it has on a child's feeding and development.

anonymrs

Tue, Jun 22 2021, 6:48 pm

amother [ Butterscotch ] wrote:

This.
Feeding and ties are very much related. A posterior tongue tie definitely can have a big impact on feeding and swallowing, even if there is decent range of movement. It's still pulling at the back of the tongue which is connected to the top of the spine and muscles that effect swallowing/digestion.
In New York, Dr. Scott Siegel is the person you want to see.

amother

Oleander

Tue, Jun 22 2021, 6:52 pm

I saw an ad in my local circular that there's a support group for mothers of kids with dysplasia.
You might get much support from people who arengoing through similar to you.
For the number, please pm me.

Last edited by amother on Fri, Jul 09 2021, 7:45 am; edited 1 time in total

amother

Butterscotch

Tue, Jun 22 2021, 7:02 pm

Surrendered wrote:

Dysplasia or dysphagia? Those are 2 different things.

amother

Impatiens

Tue, Jun 22 2021, 8:17 pm

amother [ OP ] wrote:

Has anyone dealt with this with an otherwise healthy baby? My 6 month old does not take bottles normally and we are trying to figure out what the issue is. I’ve been running in circles to doctors and therapists but still haven’t found the issue and solution. Swallowing difficulties has come up as he has a weak swallow. I’m trying to get a swallow test but it’s a long process and In the meantime I’m losing my mind spending all day trying to get him to eat.

If you dealt with this, what were the symptoms? How did you treat? What ended up happening? Please, if anyone has any chizuk or practical advice I would really appreciate it.

I’m an SLP and am very curious why this is a long process. I send out patients for MBSS all the time. Just ask your pediatrician to send in an order to your nearest outpatient radiology dept. then you call and schedule the appointment.
Granted I work with adults, but I would imagine that the process is the same.
Hatzlacha!

amother

Tue, Jun 22 2021, 8:33 pm

amother [ Impatiens ] wrote:

It’s a gi sending me and I have to wait a month until
The appointment. If you have any recommendations for a place to go in Brooklyn please let me know.

notshanarishona

Tue, Jun 22 2021, 8:40 pm

My son was born very early so wasnt otherwise completely healthy but he had laryngeal dysphagia. We did a swallow study because he took forever to eat (a 2 oz bottle would take him close to an hour as a newborn), had a very weak suck, would choke and gag while nursing (we eventually figured out that the flow was too fast for him), and could only drink out of a slow flow premie nipple until close to a year.
He did have a feeding tube at one point.
Now, he is turning 2 , and is still a slower more difficult eater and drinker than a typical toddler. He eats food with soft textures or baby food and still drinks a bottle and hasn’t graduated to a sippy cup yet. He is in feeding therapy and makes progress, just very slow. He is also on a special high calorie formula since he eats so little.

amother

Impatiens

Tue, Jun 22 2021, 8:43 pm

amother [ OP ] wrote:

It’s a gi sending me and I have to wait a month until
The appointment. If you have any recommendations for a place to go in Brooklyn please let me know.

I’m not from NY but any major hospital probably does it in their outpatient radiology department.

Surrendered

Tue, Jun 22 2021, 8:45 pm

amother [ Butterscotch ] wrote:

Dysplasia or dysphagia? Those are 2 different things.

Hmmm... didn't realize. I believe dysphagia. I'll check soon.

amother

Green

Tue, Jun 22 2021, 9:38 pm

amother [ OP ] wrote:

It’s a gi sending me and I have to wait a month until
The appointment. If you have any recommendations for a place to go in Brooklyn please let me know.

Where are you scheduled to do it?
Some places are better than others...

Also, you can call and see if there are any cancellations

amother

Tulip

Tue, Jun 22 2021, 10:28 pm

amother [ Butterscotch ] wrote:

Posterior ties can pull through the neck and esophageal musculature and fascia You can join the NY/NJ tongue tie facebook group. There are several oral therapsits, SLPs and body workers like cranio sacral therapists that can offer some support.

This was my baby's prob . I chose to not cut/clip.

amother

Tue, Jun 22 2021, 10:43 pm

amother [ Green ] wrote:

Where are you scheduled to do it?
Some places are better than others...

Also, you can call and see if there are any cancellations

Maimonides. Don’t know where else to go.

amother

Green

Tue, Jun 22 2021, 10:45 pm

amother [ OP ] wrote:

Maimonides. Don’t know where else to go.

I would try to do it at NYU or Columbia but then may take longer to get appt...

amother

Tue, Jun 22 2021, 10:52 pm

amother [ Green ] wrote:

I would try to do it at NYU or Columbia but then may take longer to get appt...

Who do I call? I’m already waiting forever…

amother

DarkViolet

Tue, Jun 22 2021, 10:53 pm

I had good experience in Nyu-rusk. My pediatrician sent in the order and I called to make the appointment...
I also did a swallow study at Mt. Sinai and the technician said she also worked in Maimonides.