How to Control Weight of My Bedridden Daughter

You absolutely must discuss this with her medical providers. Based on the info you gave, she has a good diet and does not weigh too much.

Bedsores happen because of not moving, not for being a normal weight. This means you must move her more often than you have been.

If you have a hard time lifting her her now, it will be impossible as she gets older. You'll need to hire someone who can give her the necessary care.

Hi S.-

I am sorry to hear about your daughter.

One of my kiddos had a g tube for years. We had a feeding pump, and fed her overnight a dense formula that met her nutritional needs. Then, during the day presented her with 'appropriate' food...and concentrated on the 'social' aspects of meals.

We had both a nutritionist as well as a gastroenterologist that worked with us. She has always been small for her age...and remains so now.

The other suggestion is to work with a physical therapist...not only to 'work' your kiddos muscles...but there are many pieces of equipment that can help with lifting and shifting someone confined to bed.

I am not sure what is available where you are...but hoping that you can find the help you need.

Best Luck!
michele/cat

She has the correct weight and diet for her. She needs all the nutrients your giving her. She is still a growing girl. I do have some experience with bedsores. My brother is a quadriplegic , this is from the neck down. His weight has gone up and done thru the years. You have to be on top of turning her mutable times if she is in bed, different positions. If she sits in a wheelchair during the day make sure her cushion is a really good one. We have used real sheep skin fur for over his cushion and under him in bed. We also have a sand bed that helps with bedsores. You have a huge job momma.
She is only going to grow from here. If your back hurts now ....it's best you get stronger and stay healthy. If you can get a hoya lift to lift her get one and learn to use it everyday. It's a much safer way to lift her and you will save your back.. Maybe get one donated. .

We cannot advise any changes to your daughter's nutritional requirements and food intake for now or in the future, this is a question for your daughter's health care team, they're there to help answer questions, give advice and teach, and can best address controlling her weight if needed. Ask them now as moving her every 2 hours is crucial to her not getting bedsores.

My Dad's bath aide was able to show me how to bathe and move him in bed, he weighed 104 kg (230 lbs.) At the very least you may need to learn lifting and moving techniques to minimize straining your back, at some point you may require a Hoyer lift.

We have a very good friend that had a son that was not able to care for himself.

They had a lift in his room to help lift him.. Into or out of his chair, into and out of his bed. It even was able to lift him into his bath area.

There was no way one person would have been able to move him without assistance.

I wonder if you could have your insurance look into something like this?
Your health is just as important as anyone else in your family.. cause if mom is down, the whole family can be down.

Take care of yourself.

I think she weighs what she should for 4. My son just turned 5 and weighs about 18 kg.

S.:

I am truly sorry about your daughter. Are you here in the U.S. or in Pakistan?

If you are here in the US - talk to social services and find out if you can get a hospice nurse to come in and help you take care of your daughter. It won't matter if you are not a U.S. citizen - you will get help.

In Pakistan? Sorry - I don't know much about the healthcare system there. Can you talk with her doctor and find out what you can do?

I would talk to a physical therapist to find out what I can do to make my back stronger and to ask what I can do to help prevent bed sores on my daughter.

Again, I'm really sorry you are going through this.

Do you have an aide who can assist you with some of the daily transfer duties?

Do you have a back-stabilizer to wear when you have to transfer her?

Is she totally paralyzed, or able to use her arms? If so, do you have grab bars by her bed so that the can hold them and assist you in?

You are not a US citizen - does that mean that you are not IN the US right now, or that you are living in the US, but don't yet have citizenship?

I am so sorry that your little girl is going through this. I just read more from your profile, and it seems that she is actually comatose, is that right? Can you roll her onto her side and support her with pillows, and then roll her to her stomach for a few hours, and then to her other side? That should help with the bedsores. I don't know if they have it available to you in Pakistan, but there are special cushions here in the US that can hep reduce pressure. Maybe you can find an American manufacturer that could ship to Pakistan.

It sounds like you have her on a great diet already. I agree, you will have to increase your strength or look into getting a lift for her.

The weight sounds right for her age, but you don't mention her height. My daughter was at 45 pounds when she was 4 years old, at the same time she was extremely tall.

As well, you don't mention how much cereal she is getting. If the diet is high in cereal, you could cut back on some of the cereal and add more veggies. But she could get hungry if you do that.

before you change anything in your daughters diet you need to talk to a dietician and her dr.

at 4 years 15 kg sounds about right.. she needs to eat and to grow.

if you reduce her calories she could get sick and stop growing.

I know how hard it is to manage bedsores. I hope you've had good training on how to work them so they don't develop into open wounds. It's hard work for sure.

I think when we turned a person we'd massage the red area's for a few minutes to get the blood flowing back into that area. Seems like gentle heat was a good one too. It's been years and I bet they do stuff different now. You might qualify for some sort of Advantage aid to come in and help throughout the day. Maybe do some respite care too.

Your daughter is still growing. You do not want to control her weight as long as it's normal which sounds like it is. Instead you want to learn how to move her in a healthier way as well as how to strengthen your muscles.

I suggest that you work with a physical therapist to learn how to strengthen your muscles as well as to learn new skills for moving your daughter.

I would probably keep in touch with the pediatrician and have them give you a specific diet plan.
Sorry you are watching your child struggle to live :( Keep up proper nutrition tho, you may have a genius on your hands :)