Re: Sheila: good news! (Lucas)

[Guest guest]

On the drinking problem, have you tried an ABA reinforcer regimen,

or feeding therapy with oral motor exercises? My son has always had

difficulty drinking (from nursing to bottles to cups of any kind)

and he's gotten a lot of therapy for it, along with his feeding

therapy. Here are some things that helped us:

In his feeding clinic therapy we used some very small clear baby

cups with a fluted edge that are used to teach babies to drink from

cups. It holds about 1 oz. My son used this til he was 2.5, and for

the first 6 months we only put about 1/4 oz in it at a time. He had

a hard time handling more liquid than that. The clear cup helped him

see what was coming toward his mouth, and the fluted edge helped him

tip it up without having to tilt his head back. Medela makes these

cups, you can order from them directly, but a good SLP feeding

therapist should know about them and have some.

After that, we graduated to small plastic cups but we only put in 1

oz. at a time. He had to drink that before he'd get his reinforcer

(a moment of a video or a very favored toy). We never forced him or

gave him any aversive consequences, it was always supposed to be fun

for him - the therapists wanted him to learn to associate drinking

with positive things. But at the beginning we had to reward only the

smallest successes - like lifting the cup, not chewing on it, or

taking an infinitesimally small drink. We actually began the therapy

with a straw in a squeeze bottle that he drank from sa we squeezed

it into his mouth - didn't require him to suck, all he had to do was

swallow. We would reinforce every swallow.

It was tedious, but it worked! At age 3 now, he is able to drink

from straws, sippy cups, and open cups. He still doesn't drink

enough water willingly, and since he doesn't tolerate any juices

(which he'd prefer), we still have to reiforce him to get him to

drink the volume he needs. But it's fun for him and he doesn't mind

it. I have become very creative with reinforcers and ways to get

more liquids in him. I often give him 6 oz. when we're riding in the

car, and I turn on a CD of his favorite songs for reinforcement!

When I turn it off, he knows it's a prompt to take his drink, and

then as soon as he drinks, I turn it on again.

Email me if you want more info, I don't want to spend too much time

OT.

Suzanne

>

> Hi Sheila...thanks so much for your reply. I have some exciting

news since

> my last post. Lucas began to refuse to drink the coconut milk a

few days

> ago. He has done this many times in the past as well with the

brown rice

> milk and any fluid. His thirst mechanism may still be affected

from his

> surgery.

[Guest guest]

Hi Anita,

> Lucas began to refuse to drink the coconut milk a few days

> ago.... I took advantage of this though and I stopped the

> coconut milk altogether!

Yay! no more illegal coconut milk!!

> We've been giving Lucas the Santa Cruz Organic

> White Grape Juice diluted with lot's of water. The ingred. are

filtered

> water, organic conc. white grape juice - is this legal?

Santa Cruz is not one of the juices Elaine checked out. Welch's

white grape juice is legal. Also Knudsen's makes a legal organic

concord grape juice : " Organic Just Concord grape "

> As for the epsom salt baths, we've been wanting to do this but

wondering if

> this could dehydrate Lucas at all/affect his sodium levels. He

does take

> APO-DESMOPRESSIN spray 1xday to help his body retain water. The

ingred.

> listed are desmopressin acetate in a buffered, isotonic, aqueous

solution

> containig .01 % benzalkonium chloride as a preservative. Is this

legal?

It looks okay and anyway sounds very necessary at least for now. IS

the " DI " in the signature line for diabetes?

> We continue to pray that Lucas' ADH (anti-diurrhetic hormone) will

kick in

> fully, but in the meantime if we do not give him his medicine, he

will

> urinate everything out and dehydrate.

With his condition it may be good to hold off on the epsom salt

baths or at least check with his physician first and see if it will

cause him to dehydrate. If looking for something to help with die

off, activated charcoal may be better but still speak to the

physician and make sure it won't intefere with meds (it should be

taken away from foods and meds) or worsen his dehydration.

Sheila, SCD 61 mos, UC 22 yrs

mom of a daniel

[Guest guest]

Hi Anita,

> Lucas began to refuse to drink the coconut milk a few days

> ago.... I took advantage of this though and I stopped the

> coconut milk altogether!

Yay! no more illegal coconut milk!!

> We've been giving Lucas the Santa Cruz Organic

> White Grape Juice diluted with lot's of water. The ingred. are

filtered

> water, organic conc. white grape juice - is this legal?

Santa Cruz is not one of the juices Elaine checked out. Welch's

white grape juice is legal. Also Knudsen's makes a legal organic

concord grape juice : " Organic Just Concord grape "

> As for the epsom salt baths, we've been wanting to do this but

wondering if

> this could dehydrate Lucas at all/affect his sodium levels. He

does take

> APO-DESMOPRESSIN spray 1xday to help his body retain water. The

ingred.

> listed are desmopressin acetate in a buffered, isotonic, aqueous

solution

> containig .01 % benzalkonium chloride as a preservative. Is this

legal?

It looks okay and anyway sounds very necessary at least for now. IS

the " DI " in the signature line for diabetes?

> We continue to pray that Lucas' ADH (anti-diurrhetic hormone) will

kick in

> fully, but in the meantime if we do not give him his medicine, he

will

> urinate everything out and dehydrate.

With his condition it may be good to hold off on the epsom salt

baths or at least check with his physician first and see if it will

cause him to dehydrate. If looking for something to help with die

off, activated charcoal may be better but still speak to the

physician and make sure it won't intefere with meds (it should be

taken away from foods and meds) or worsen his dehydration.

Sheila, SCD 61 mos, UC 22 yrs

mom of a daniel

[Guest guest]

Hi Anita,

> Lucas began to refuse to drink the coconut milk a few days

> ago.... I took advantage of this though and I stopped the

> coconut milk altogether!

Yay! no more illegal coconut milk!!

> We've been giving Lucas the Santa Cruz Organic

> White Grape Juice diluted with lot's of water. The ingred. are

filtered

> water, organic conc. white grape juice - is this legal?

Santa Cruz is not one of the juices Elaine checked out. Welch's

white grape juice is legal. Also Knudsen's makes a legal organic

concord grape juice : " Organic Just Concord grape "

> As for the epsom salt baths, we've been wanting to do this but

wondering if

> this could dehydrate Lucas at all/affect his sodium levels. He

does take

> APO-DESMOPRESSIN spray 1xday to help his body retain water. The

ingred.

> listed are desmopressin acetate in a buffered, isotonic, aqueous

solution

> containig .01 % benzalkonium chloride as a preservative. Is this

legal?

It looks okay and anyway sounds very necessary at least for now. IS

the " DI " in the signature line for diabetes?

> We continue to pray that Lucas' ADH (anti-diurrhetic hormone) will

kick in

> fully, but in the meantime if we do not give him his medicine, he

will

> urinate everything out and dehydrate.

With his condition it may be good to hold off on the epsom salt

baths or at least check with his physician first and see if it will

cause him to dehydrate. If looking for something to help with die

off, activated charcoal may be better but still speak to the

physician and make sure it won't intefere with meds (it should be

taken away from foods and meds) or worsen his dehydration.

Sheila, SCD 61 mos, UC 22 yrs

mom of a daniel