Feeding issues with my deaf daughter.

She has big issues with things going in her mouth by spoon. I have had to give her meds and she is associating food with the meds we think.
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Have you had her evaluated for apraxia? Apraxia is VERY common in dhh kids. Often the first sign is being "sensory sensative" with oral feedings.
 
I haven't but I will ask about it. Thank you. We go to a feeding clinic in Richmond, VA on the 19th. They deal with all types of issues. Maybe they can give us some insight to why she is so hard to get her to eat.
 
Axcan Pharma Online Store: SCANDICAL

Buy it and use it often. It's tasteless and fairly well known within the cystic fibrosis community because of difficulty gaining weight. Scandical adds 35 calories a spoon, which might not seem like alot, but it adds up. You can put some in her drinks and on top of / stirred into anything else she eats.

Another suggestion: do you use contrasts for her meals? Placing lighter coloured drinks in dark cups and dark drinks in light cups, dark food in light plates, ect. It can make it easier for her to identify the food and encourage her to grab it. (I don't know how visually impaired she is, so this may or may not work)

Personally, since I have colour defects, I found some coloured foods (especially when wearing my special red glasses for photophobia) looked disgusting. This was especially true of some green foods. Again, I don't know if this might apply to her.

I hope the feeding clinic went/will go well. Take care.
 
ashleysmommy said:
I just want her to be able to communicate better with me. Right now she whines or gives me a really fake cry to get what she wants. .
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She is testing your authority and wants your attention. It seems like she is a smart baby since she knows how to make you do things in her own way. If I were the parent, I would refuse to feed her the bottle. First few days, I can predict that she will give out a tantrum and a lot of crying. I would not bother to give in her way until she gives up to my own way. When she is crying because she is hungry then I only will offer her the spoon with the solid food. I believe she will give up and start to eat the solid food on the spoon.
 
WildHunt said:
hmm... well I've noticed some stores sell forks/spoons with airplanes on them or whatever (like an actual shape of an airplane for the handle).. maybe it can attract her attention towards the utensil?

With my kids, all I did was wave their attention to me and let them know the spoon was coming... but I also had to reduce the distractions around them.. like no tv, no music, cats out of the kitchen, blinds closed, etc.

It takes time and patience with all kids, I think.
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That's a cute idea. :)
 
Cane Corso said:
She is testing your authority and wants your attention. It seems like she is a smart baby since she knows how to make you do things in her own way. If I were the parent, I would refuse to feed her the bottle. First few days, I can predict that she will give out a tantrum and a lot of crying. I would not bother to give in her way until she gives up to my own way. When she is crying because she is hungry then I only will offer her the spoon with the solid food. I believe she will give up and start to eat the solid food on the spoon.
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I disagree. She might not. She might just lose more weight.

I think that you have to compromise sometimes. If she will drink from a bottle I would liquadise her food and give it to her that way and see how it works.

I think a disaplinarian line would be a bad move while she is still under weight.
 
I would never with hold food or bottle from her. She gets mad to the point she won't eat at all and will throw up anything she has in her at the time. She has a terrible temper. I made baby steps today. She ate some stage 3 food with noodles in it. She had just flat out refused anything with texture at all. I offer the solids first. I give her around 30 mins to 45 mins and then I give her the bottle. Every ounce is precious to us so I stop before she gets to her point of refusing to eat at all. I hope being persistent works it's magic and she will just catch on one day like she did with a water and a bath. That was horrible too and now she loves a bath. Thanks again for all of the advice.
 
ashleysmommy said:
I would never with hold food or bottle from her. She gets mad to the point she won't eat at all and will throw up anything she has in her at the time. She has a terrible temper. I made baby steps today. She ate some stage 3 food with noodles in it. She had just flat out refused anything with texture at all. I offer the solids first. I give her around 30 mins to 45 mins and then I give her the bottle. Every ounce is precious to us so I stop before she gets to her point of refusing to eat at all. I hope being persistent works it's magic and she will just catch on one day like she did with a water and a bath. That was horrible too and now she loves a bath. Thanks again for all of the advice.
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Good progress. At this stage I would be less focussed on what she is "supposed" to be doing and work steadily at your own pace. As long as she seems mentally alert and is progressing fine with gross motor skills then she is probably getting the amount that is right for her. Childen vary quite a lot in terms of what is the right amount for them. She will eventually come to like solids - you never see adults walking around with babies' bottles in their mouths or wanting all their food blended :)

And don't follow that advice of withholding food! :eek3:
 
She has always had to do things in her own time. She does not like to be pushed at all. Who does I guess. I just worry that she is not getting all of the nutrients that she needs to develop. She is so small for her age. We go to the feeding clinic this Friday so maybe they can help too. Thanks again for all of the advice.
 
ashleysmommy said:
She has always had to do things in her own time. She does not like to be pushed at all. Who does I guess. I just worry that she is not getting all of the nutrients that she needs to develop. She is so small for her age. We go to the feeding clinic this Friday so maybe they can help too. Thanks again for all of the advice.
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She sounds like a fiesty little thing..makes me want to hold her. :)
 
She sure has a Mind of her own... hehehe.. she's sound soo cute!!! she surely is a fighter and she'll be fine.. People say kids won't starve they just will eat when it's time... smile hang in there!!

I could remember my two healthy nephews when they were younger refuse to eat anything, so today they are healthy as a horse... soo sometimes it just a matter of time... I use to hate vegetables till maybe in my 20's lol.. shhhhhh
 
Ouch. I remember myself refused to eat anything for long time after I became deaf. Only thing I wanted was ice cream. I remembered I went to my godmother's house while my parents work. She made me a lunch and I refused to eat any of them so she made me sit in that chair everyday till I realized it I do not want to sit on the chair all day everyday. I finally started to eat slowly. Now I wish I was stay skinny forever. If I was you, I would not worry about her not eat enough. She was just being a stubborn as I was.
 
ashleysmommy said:
She does have sensory issues.. We ( all of her therapists and I) are trying to help with those. Bless her heart she has had to overcome so much. She in my eyes is doing great for a little girl with so may hurdles. She is a very determined little girl so I know she will be fine I just need to be patient. I just worry sometimes because I don't want her docs to suggest a feeding tube if we can't get her to gain a little here and there. I know sometimes she must feel bombarded.
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I have a friend who's boy has sensory issues. He is older than mine by a year, but still weighs less, but is thriving well. She just fed in bits and pieces. She also found a therapist to work with him on the sensory issues. She was also fortunate to find a preschool who understood his needs. If you need someone to talk to about sensory, I can connect you with her via email. She is also a sign language interpreter.... Not sure where you are.

A
 
Thank you. That would be great. We went to the feeding clinic. Wow!!! They had some good points but they didn't have a program geared toward children with any hearing or vision impairments. Their program was reward based. That is great if the child is hearing and has good vision. Ashley could care less about that right now. They also wanted to put elbow restraints on her so she could not bring her hands to her face. That was a BIG HELL NO for me. Sorry for the language. Part of learning to eat is exploring and playing with food and being able to put her hands in her mouth to taste the food. That program is not for us. We have decided to up her OT to 2 times a week and work on this from home. In about a month I have her opening her mouth for the spoon more. In one week with calorie boosters she has gained almost a pound. It would take her over a month to gain a pound without any supplements. So to me we are on the right track. Thanks for all of the advice and helpful info. Sorry to ramble on.
 
I'm glad she's making some progress with her weight. Sorry the clinic didn't work out well, I can't imagine someone telling parents to put restraints on a young child..
 
ashleysmommy said:
Thank you. That would be great. We went to the feeding clinic. Wow!!! They had some good points but they didn't have a program geared toward children with any hearing or vision impairments. Their program was reward based. That is great if the child is hearing and has good vision. Ashley could care less about that right now. They also wanted to put elbow restraints on her so she could not bring her hands to her face. That was a BIG HELL NO for me.
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:eek::eek:

There are programs like that out there? Putting restraints on the elbows seems like child abuse to me.

Plus reward based programs lead to ongoing problems in the long term. It makes eating unnatural and risks undesirable side effects such as adult obesity, bulima etc.
 
ashleysmommy said:
Thank you. That would be great. We went to the feeding clinic. Wow!!! They had some good points but they didn't have a program geared toward children with any hearing or vision impairments. Their program was reward based. That is great if the child is hearing and has good vision. Ashley could care less about that right now. They also wanted to put elbow restraints on her so she could not bring her hands to her face. That was a BIG HELL NO for me. Sorry for the language. Part of learning to eat is exploring and playing with food and being able to put her hands in her mouth to taste the food. That program is not for us. We have decided to up her OT to 2 times a week and work on this from home. In about a month I have her opening her mouth for the spoon more. In one week with calorie boosters she has gained almost a pound. It would take her over a month to gain a pound without any supplements. So to me we are on the right track. Thanks for all of the advice and helpful info. Sorry to ramble on.
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Elbow restraints? Yikes. Did they say why they want to do that to prevent her from bringing her hands to her face? It just doesn't make sense to me. I would say HELL NO too!

Just do what you feel is right for your child. Ashley looks great to me in the pictures, so obviously you are doing something right. :)
 
Ashley tends to push away things badly. They said if they kept her from pushing it away they could get her to eat. It will only make her more determined to NOT do what they want. She hates to be held down or restrained. They have a good program for the most part but they had nothing different to offer me as a mom of a child that is deaf and visually impaired. Their treatment is so general and would not work for us. We are getting OT 2 times a week now and Ashley has gained a whole pound in a month. YEA!!!!! Thanks for all of the input. Seems we may have found a combination of things that work for her.
 
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