RE: Heidi- Swallowing/feeding update

[Guest guest]

She has been 100% G-tube fed for a while now, but the OT/feeding

team/GI doc/etc. wants to try teaching her how to eat orally. They know she

experiences delays in her swallowing of liquids, but haven't seen any

problems swallowing applesauce on video. On the contrary, in the ENT

office, she wouldn't even swallow it about 1 month ago, but just held it at

the back of her throat. I want to help her eat orally (I am sure you know

the feeling of dread about her possibly never being able to eat orally!) but

also am afraid she just can't. I wish they would have tried more than one

texture. If they would have tried the thicker stuff I think it would have

showed problems as I have seen since Friday. She does want to eat and puts

things to her mouth thankfully. She has come a long way in that department.

She used to not put anything to her mouth after the 2nd and 4th month

strokes. She seems to want to eat and yet after just 2-3 bites starts

pushing it away and getting flustered. It just seems too hard for her to

get it to the back of her mouth where it should go and she gets flustered.

I appreciated the OT's perspective as she also said due to her Mito fatigue

issues and the daily changing of her circumstances, some days might be much

more dangerous than others. We have noticed several tiny occurrances of

SLE's in the past month that are bothering me as well. She normally has

drooping toward the left of her mouth but for the past few days it is

towards the right again. Some days she allows us to work in her mouth for

OT and other days she is very protective of her mouth and face.

I am DEFINITELY going to talk to all the docs/OT's about this issue and

be very careful in proceeding forward with oral feedings. It is amazing how

much more gunky sounding she has been at bed time the past few nights too.

I know this has to do with oral feedings and knew this might occur because I

could see her slowly getting better with that issue as we decreased her

nursing and the increase on days where she has nursed more due to stress or

illness.

Thanks for your advice and help. I will update you as we learn more

information this week.

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,

seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines

>

>Reply-To: Mito

>To: Mito

>Subject: Re: Swallowing/feeding update

>Date: Sun, 01 Aug 2004 09:43:57 -0000

>

>-Hi Darla

>I'd be careful with ANY oral feeding. In fact, I'd actually

>encourage you to focus on self-feeding rather than spoon feeding at

>this point. In our case, opened her mouth to eat even if she

>was too tired to swallow, and we'd find baby food drooling out for a

>long time, plus in her nose. That didn't usually happen if we let

>her play with the food and control it herself. Plus, aspirating food

>could make her more defensive and could cause bigger problems.

> does a better job taking tastes from a toothbrush than from a

>spoon. (I know, big " ick " factor seeing food on a toothbrush, but it

>works!)

>

>How frustrating for you. Does Zipporrah enjoy eating and drinking?

>We tried thick-it in juice and it was never a big hit. Are you

>feeding for nutrition or oral motor stim? used to be

>on " tastes " and when I asked how much a taste was the OT told me 1/8

>to 1/4 of a teaspoon!

>

>Good luck

>Heidi, 's Mom

>www.caringbridge.org/ma/heather

>

>-- In Mito , " Darla Klein " wrote:

> > Zipporrah had a video swallow with an OT at Mayo yesterday and

>it

> > showed issues with liquids in particular. When swallowing liquids

>she would

> > hold it temporarily in her throat for approximately 3-5 seconds

>before

> > thoroughly swallowing it. The OT said that this could be a big

>potential

> > for aspiration problems. They also fed her applesauce which she

>seemed to

> > handle, but only did about tiny 4-5 bites and the OT wonders with

>fatigue,

> > illness, or etc. if the food could also be problematic. They felt

>she was

> > protecting her airway enough though with the applesauce that I

>could begin

> > to try feeding her some daily. The told me to stop if she began to

>cough or

> > gag much and also not to force her but only give her what she

>accepts

> > readily so she has some control over it since it is a scary issue

>for her.

> > WELL... last evening and this morning I tried to feed her

>Gerber first

> > stage Oatmeal with applesauce baby food and found that within 2-3

>bites both

> > times she started to cough and have difficulty dealing with it in

>her mouth.

> > This was a thicker consistency than she had during the swallow

>study and

> > now I am wishing they tried different textures and thicknesses to

>see how

> > she did with them. Also, last night she was coughing and more

>gaggy during

> > her sleep than usual and I am wondering how safe it really is for

>her!

> > I plan to discuss this with her GI and physiatrist as well at

>the OT

> > that did the study to let them know what she is doing to see how

>safe it is

> > or to find out what types of baby foods to try other than

>applesauce. (I

> > know it is thinner than what we used for sure!) But then liquids

>are hard

> > for her too, so it seems like there may be a fine line of safety

>versus

> > dangerous for her!

> >

> > Darla: mommy to Asenath, Zipporrah, Luke, Leah, Rachael, Isaac,

>Tirzah,

> > Kezia, and Marquis

> >

> >

> >

> > Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes,

>migraines,

> > seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays,

>asthma

> > Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach

>issues,

> > disautonomy, hypo & hypertonicity, migraines

>

>

>

>

>Please contact mito-owner with any problems or questions.

>