This must be so difficult for you. Are your daughter's kidneys enlarged? In such a small body, if they are taking up a lot of space, it is possible that everything is being squashed, including her stomach, so that she always has a feeling of fulness. If this is the case, little and often is the thing. What do the doctors say? Sometimes children who have illnesses early on and receive a lot of attention as a result, develop behavioural issues, including with food. Has she seen a psychologist? I wish you well with this.

I agree with Chewitt. Sometimes our left kidney, especially, gets so big that it squishes against our stomach and causes us to feel full sooner and not be hungry as often. I would ask the doc to run an albumin test, this shows if she's malnourished. I'm curious about her diagnosis. Did she actually have an ultrasound that showed cysts in both kidneys? What's her renal function. Also, as Chewitt said, if there is no physilogical reason for her to feel full sooner than normal or get full faster than normal, then she could be using food as a way to control an out of control health issue. If her nephrologist says her albumin level is normal and an ultrasound doesn't show crowding of her stomachm then maybe therapy is an option to help her cope. Hope this helps.
tami

Dear Chewitt,
Thank you so much for answering me. Lulu my daughter is scheduled again to have her next ultrasound in Nov 2009. We have not done an ultrasound in two years so she is now due for ultasound and full blood work up. She has been a terrible eater since birth and have always had to go to doctor when she was very little for weekly weigh ins. We have been to 3 therapists and are scheduled to meet with 2 more. The experts still dont know if it is control issue or she really has belly aches. This is a really tough call. We just finally did food charting and still waiting on results. I know she doesnt get enough calories. I never put pressure on food.

It must be difficult being so young knowing this. Look up the site PK Diet from Diane in Hawaii. She has great advice and knows the medical profession as well. Knowing that eating too much protein is not good for the kidney's function, you should make sure she eats quality protein. I am discovering that protein isolates - whey, soy, hemp, rice are the easiest way to digest protein.

I am sending prayers and loving angels to help heal. She might also benefit from an allergy test to make sure she is not eating something that she cannot. A naturopathic allergy test takes it from the saliva and is not invasive for her.

As for the size, get her to start picturing the perfect size kidney as well as you. She is in great hands.

Roberta

I'm a 30 male with PKD. My entire life I've never really been able to eat much, exspecially as I get older. Eating often makes me feel discomfort and overeating causes a lot of pain. Also soda's seem to kill me, 2 cokes and I feel like someone kicked me in the back. On the flipside though, I didn't know what was happening to me till i was in my mid 20's and she has an oppurtunity to learn good eating habbits which she can use her entire life. I'm no doctor but I know diet can make a big differnce in how someone with PKD can feel. I wish you and her nothing but the best!

Mgmchris:

Stop with the coke! ;) lol

Caffeine's not good for PKD and also the carbonation causes extra bloating which can cause more discomfort for us.

It's true....diet does change so many things. Just in general....when you eat better, you FEEL better anyway.

That's what I've noticed anyway. :)

Wishing you all well!

I am a 43 year old woman with ADPKD, which I have passed on to both of my children as well. My daughter was diagnosed at 8 due to problems with high blood pressure, she's 16 now and her kidney function has held steady within normal ranges. We are very grateful for that.

I wanted to comment on the stomach aches you mentioned that your daughter gets. Has anyone considered that they might be due to kidney pain? For myself my left kidney reaches into my abdominal area with the lower lobe aprx an inch away from my belly button. And I do get chronic pain from my kidneys, especially the left. Just something to consider. Pain certainly robs your appetite.

Celexa seems to be a bit of a drastic step to take in trying to increase your daughter's appetite. Here in Canada anti-depressants are not recommended for children under the age of 18 with the exception of Prozac.

I have been on Celexa since last January due to depression and although I have found it to be helpful in mood it hasn't increased my appetite in any way. Which is a good thing in my case.........

I'm sorry for your stress in trying to manage with your daughter's lack of appetite. I like to snack on different trail mixes in the afternoon rather than than bothering with a meal. The nuts and fruits are healthy and low maintenance to eat.

I suffer from similar symptoms to your little girl and I find lots of exercise helps my appetite.Love to you .