No water or Juice to drink???

[Anonymous]

Tyler was diagnosed with oropharyngeal dysphagia last week. amongst his other problems. Speech pathologist told us no water or juice because they are too thin. Pulms agreed. Only formula. They told me he would take as much as he needed and not to worry because he would adjust.

He is also slightly underweight probably because he just started walking. So it was also a caloric intake issue.

This just dosent sound right because he always sounds bad (junky?) or worse after a bottle. He sometimes sounds worse after a sippy cup with 50/50 water and juice.

Now the real problem lies in the fact that he refuses to drink formula out of a cup and refuses anything but formula from a bottle.

This weekend we were at our place in the mountains and he refused formula from a sippy and took less than normal from his bottle. We did not offer him water during the day just formula. He did not look or seem dehydrated, so this went on for almost three days.

Finally, coming back home he was screaming and we couldnt figure out why (duh!). I figured it was his ears because he was still on antibiotics for an ear infection. Pacifier didnt help so I figured giving him a drink would help. Gave him a small sip of water from my cup and he grabbed it and drank about six ounces or so out of it. I took it away he screamed. I finally gave it back until he was done. He must have been so thirsty! I feel horrible.

I gave up and have started to give him water/juice again. Plus my family thinks the whole idea of no water is stupid (i do kind of too) so there is a lot of pressure to ignore the docs.

Any advice/help would be greatly appreciated.

What should I do? Listen to the docs or my family who are not docs?

[Anonymous]

I’m a speech therapist, although I haven’t treated anyone with dysphagie, I’ve worked with swallowing patients some, so I may be able to help a bit.

First, how was Tyler disgnosed? Did they do a barium swallow or other test? Was this your first visit with the speech path?

No water or juice sounds harsh, but I can understand why. Since dysphagia is a swallowing disorder it makes it difficult to correctly swallow thin liquids. There is a risk of aspirating them. Did the therpaist mention thickening liquids? There is something called “thick-it” that I have used many times to thicken water and juice. They actually make thickened juice.

The only thing I can think of is maybe the therapist is wanting you to wait till she tries thickened liquids first? Dysphagia is a very specialized area in speech therapy. I would also make sure your therapist is adequately trained and experienced in how to treat patients with dsyphagia. I used to work for UCP who actually had a dsyphagia team.

Here are some links to look at: http://www.valleyhealth.com/Health_Library/mayo_catlinks.asp ?navid=10&sp=520

http://www.gicare.com/pated/edtgs07.htm

[Anonymous]

Dr Lefton Greif (Hopkins) did a swallow study with barium. Apparently she is the one who wrote the book on dysphagia and videofloroscopic diagnosis of Dysphagias. She is “the best” according to alot of people, not just the docs.

This was our first visit to her. Tyler has been being treated for severe wheezing since 3 months old. His second opinion doc recommended we check for swallowing problems and see an ENT.

She did mention thickened liquids, but gave me no further information.

Tyler has possible food allergies and is on a very limited diet of solid foods because of the possibility of an allergic reaction. We do not know what these allergies are so we have to watch for reaction at each intro of new food. They cannot do a scratch test b/c of the wheeze that does not go away. His RAST was negative for everything. He had a scratch test at four months and was neg except for dog and dust mites.

He does aspirate, as shown by lung wash with lipid laden maacrophages.

Thanks for your expertise, I will check out those links.

[Author]

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