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DAvid continues to haveEating Difficulties/Mild Sleep Apnea.


 
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katina
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Joined: 14 Dec 2009

Last Visit: 24 Aug 2010
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PostPosted: August 22 2010, 1:41 PM    Post subject:
DAvid continues to haveEating Difficulties/Mild Sleep Apnea.
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I have questions for all parents who may be dealing with swallowing difficulties & sleep apnea.

David is still not eating anything by mouth. I often feel sad, because I don't know what else to do.

He was never able to successfully eat from a generic bottle. He could only eat from the Variable flow bottle by Born Free. After 3 years, he was diagnosed with failure to thrive and had a G-tube. I continued to feed him by g-tube & practice oral feedings with a bottle & also with a spoon every 2 hours for almost a year w/ no success. So, the therapists requested me to get rid of his bottle & to just practice spoon feedings. We did it for 6 mos. He would not swallow.

He is 4 years old and is still 23 pounds & no oral swallows. We have regular speech/OT therapies (3 times per week). Yet I have seen various therapists and they don't seem to know what to do. After a recent swallow study we found out that his anatomy is fine. He had a good protective mechanism. No aspiration. No reflux. (although I still see projectile reflux when I add an extra dose of oil and often hear him cough @ night even though he takes 1 prevacid pill /day).

He had his adenoids & tonsils removed & the drooling is so much better!!!

We had tried forceful feeding @ a hospital for 3 months and it was awful. He would cry him self to sleep and no success. I tired a very gentle approach with an OT and she told me that in her 30 years experience, she had not seen a case this severe & referred me to other therapists.

We tried doing vital stimulation because he was drooling so much, but the therapist told me that she couldn't trigger a swallow. We also noticed that david couldn't even feel the electrical current in his cheeks and she then decided to do a different approach SOS feeding therapy.

We are now doing an SOS feeding therapy to treat his sensory issues. He sometimes gags by just touching purees & nut butters.

yesterday I cut a piece of lemon & left it on the table with the peel on for him to suck. He was liking the lemon. He won't touch the slippery part with his fingers, but appeared to like the flavor. So I am going to continue offering lemons! However, I have tried so many foods, and doesn't appear interested. He likes lemons but I am concern about his reflux.

Also, he still has sleep apnea and the neurologist is requesting for his lingual tonsils to be removed because he has a large tongue. He had his tonsils & adenoids removed recently and the teacher @ school told me she saw a huge difference in mood/energy & immediately saw an improvement with drooling & tongue retraction.

Last week I saw an ENT who has experience working with adults with down syndrome and he told me that I just had to wait for him to grow. he said that some adults with down syndrome never grow out of their sleep apnea despite opening their airways. He thinks this has to do with low tone in his neck.

I sort of agree with this last Doctor. I think that probably he has low tone in his neck, mouth & torso. David can't go down the slide w/out assistance and he uses his shoulders to lift his head to reach an object.

I am sorry, I feel so sad because I work so hard to meet his calories and he is still so small. He looks like a 24 month old and he is 4 years old. I want him to eat so badly. I often can't sleep @ night thinking of ways to increase his calories (with out milk, soy, wheat since he is intolerant) and feel obsessed with oral feeding because I want my life back.

Anyone here has similar story?

Should I try to get a second ENT opinion?

Should David get a lyngual tonsil surgery to open airway?

Anyone here had Adenoids/Tonsils & lingual tonsils removed to improve Sleep Apnea?
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TheBradyBunch
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PostPosted: August 22 2010, 3:44 PM    Post subject:
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Noah wouldn't swallow anything either...

Then he got meds given to him twice a day for months by mouth, and it was made pretty clear, swallow or I'll make you gag. I know it sounds bad but he has to get his thyroid and reflux meds...so I have no alternative. It seems that once he realised swallowing those really weren't so bad (and believe me that alone took a long time)...he just randomly decided he wanted to eat, and he could and would swallow... We are just in the beginning of this and he's almost 3 1/2.

Noah had a few things that needed to be worked out

- Reflux
- Celiac Disease
- Thryoid

Now that those have been worked out for almost a year, he apparently has decided to start eating...more or less out of the blue. He also has sensory issues (apparently mashed potatoes texture is his preference)

I also continued to let him drink bottles, I figured if he'd drink a bottle it would be better than having to be tube fed. He is on 5 bottles of pediasure per day. The OT in the beginning recommended fast flow nipples which he had up until about two days ago...

I figure if he needs his liquids thickened because they come out so fast he can't manage it, then what is the point of a fast flow nipple if I have to thicken the pediasure to slow it down and make it more managable? So, he is back on the newborn slow flow...so far he manages fine with no dribble.

I guess to sum it up...

IMO what happened with Noah was he got practice via me giving him meds with swallowing things that are not normal to him aka his bottle...mix that with seeing his siblings eat real food, other health issues being worked out and a whole whack of time...he just "got it". Now when I feed him though (keep in mind this is like two days in) he doesn't swallow right away. He will still hold it in his mouth, and occasionally I have to put the spoon back in to force a swallow...sounds bad but he doesn't care and the food gets swallowed...then of course I cheer and he understands that this is a good thing...

I'm sure you have tried everything under the sun and more...but this is just what has apparently worked for Noah...

HTH

Christina

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10)



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Tigger
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PostPosted: August 22 2010, 6:02 PM    Post subject:
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Talitha was fully tube fed until she was 3 and for a long time she wouldn't swallow. I was never able to feed her with a bottle. She did start to take food into her mouth but first off she would spit it out again, then she would chew it and spit it out and one day I spooned some chocolate yoghurt into her mouth and it didn't come out again and that was the start of her swallowing. Teaching her to swallow was really hard. All of the family would chew and exaggerate swallowing and then show her the food was gone but it didn't happen for her until she was ready. She still chokes a bit (she used to choke a lot) and she still has sleep apnoea but at least we were able to pull out her g-tube.

Her neck is very strong and although internally she has trachea malacia and other issues which cause the sleep apneoa, she is fine physically in other ways. She is also about the size of an average 2 year old and she is nearly 5. She had her tonsils and adenoids done about a year ago.

Talitha is lactose intolerant but we get an additive called Lacteeze which contains the lactase enzyme which helps the body process lactose. It means we can give Talitha stuff like chocolate yoghurt. That was one of her early staple foods and she still has it for at least one meal a day.

I don't know what to suggest. The only thing we did was model everything. We always gave Talitha a meal (or a selection of what we were eating) even though she didn't eat and so all that time she sat with us at the table at each meal and watched us eat. She would throw her food mostly and later on put it in her mouth and spit it out but eventually she ate.

I do understand the frustration. It is so much easier to run out of the house with a drink bottle and a banana than to have to bring all the tube feeding stuff along.

Personally I wouldn't be doing any more surgery for the sleep apnoea. Perhaps a CPAP set up for him? That is what I am looking into for Talitha.

I don't know if you have been modelling eating consistently but that is all I can suggest. Cut the food into small enough bits for him to pick up or spoon up if he can do that (we are just getting the hang of it) and see what happens.

I really hope you can get somewhere {{{{{hugs}}}}}

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14
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katina
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Last Visit: 24 Aug 2010
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PostPosted: August 24 2010, 10:24 PM    Post subject:
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thank you Cristina & tigger so much for your reply. I don't know what I would do with out this group. I sometimes feel so alone and I am glad to know that perhaps David could eat like Talitha & NOah. I really hope so. Today I spoke to David's speech therapist and she provided me with really cool information about this center.

There is something called the POPSICLE CENTER. It is a support group for parents who have children with eating difficulties. I will be posting it on the General forum in case other parents may want to check it out.

http://www.popsiclecenter.org/index.asp
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Jamie
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PostPosted: August 29 2010, 8:34 AM    Post subject:
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So sorry you are going through so much! I have/had similar issues with my girls and I know how much is kept me up at night worrying! A child NEEDS sleep and nutrition more than anthing and it is so frustrating when they don't get that. I've cried over and over with frustration because of it. Mine is split between the girls. Mary has the sleep apnea and Amelia has the extreme feeding issues. I know you are doing therapy, but what exactly are you doing for therapy?

We do extreme feeding therapy for Amelia where we slowly intoduce her to food, first at the table infront of her, then touching the top of her head going down to her arms and hands until she can tolerate playing with it. Eventually we get to her face (forehead, nose, cheeks, lips) until she puts it in her mouth. After that comes chewing and last comes swallowing. Each time the food is played with and even if it is spit out we cheer her on for contact with the food. We start with liquid or cream food and introduce new foods by associating it to the previos food color or shape. A therapy session will be something like... chocolate milk, chocolate pudding (brown), bread sliced in spears (brown), carrot sliced in spears (shape), cheese puffs (color and length).

Amelia went from not being able to look at hard food across the table without turning away and gagging to putting everything in her mouth and chewing and swallowing soft chewables (pastas, pbj sandwiches, etc.) We are still working on the hard crunchables, but she will now eat graham crackers. This is a long (been doing it for just under 2 years) and messy method, but it has been amazing to watch and Amelia is actually becoming an amazing eater and is less picky than Mary my good eater. I appologize for the long response if you have tried this or are currently doing this method in therapy, but if you are not I really suggest looking into it with a feeding specialist. Good luck and hugs to you.

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-Jamie
Mom to
Mary Elizabeth DS (Feb.16, 2005)
Amelia Anne DS (Aug. 10, 2007)


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Jamie
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PostPosted: August 29 2010, 8:42 AM    Post subject:
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Just wanted to add one more thing... what I LOVE about this program is that there is no forcing. My daughter did it on her own free will and she has no anxiety about food and it is something that she is learning to love instead of fear and hate. She tries everything now, even if she doesn't swallow it. She enjoys a huge variety of flavors and loves veggies! Forcing may work for some, but this has really worked well for us.

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-Jamie
Mom to
Mary Elizabeth DS (Feb.16, 2005)
Amelia Anne DS (Aug. 10, 2007)


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Momtoseven
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PostPosted: August 29 2010, 9:36 PM    Post subject:
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I am feeling extremely anxious after hearing all this. Mark is going to the intensive feeding program at Hershey in two weeks. He will put food in his mouth, but he does not like it and he will not swallow. He will swallow water with no problem so we know he can do it just not with any food. I am hoping and praying we will have some success at this program and maybe I will have more to add to this post during our time in Hershey. One thing I do know is that they will not force feed Mark at the feeding clinic - I am glad about that.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (2 - ds, av canal -repaired 6/10/08, pulmonary hypertension)
https://www.carepages.com/carepages/MarkEdwardC32708
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