A little about what I'm dealing with ATM. - Early CKD Support

Early CKD Support

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A little about what I'm dealing with ATM.

Mydestiny2000 profile image
4 Replies

Hi I recently learned my daughter is in Stage 3 and only 17..

She is Autistic and non verbal and only eat a few foods..

It's gonna be real hard to try to change her diet..

Maybe I can include supplements..

I know I need to talk to a dietician asap..

She also has Spina Bifoda.. shunt.. Scoliosis..

Just seems like one thing after the other..

My poor girl!!!!!!

😢😢😢😢😢

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Mydestiny2000 profile image
Mydestiny2000
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4 Replies
phillen profile image
phillen

you dont need to change her food at this stage just a normal healthy diet if you can & plenty of fluids x

Beanbag5 profile image
Beanbag5

Honestly, changing diet really only has minimal effect in most people, particularly if you already live a healthy life style. Diet only really comes into play when you begin to progress and have elevated phosphate and potassium. But don't think about that for now, enjoy your usual routine with your daughter. All the best :)

Zazzel profile image
Zazzel

I sent you a little note. I'm sorry your daughter and family is having to take on another issue. Another thing to make sure of is to avoid NAISD like aspirin or ibuprofin. Discuss with your doctor, but mine told me to only use Tylonol in small doses if needed.

Nicolala profile image
Nicolala

Hi.

I was 17 when I went into renal failure. I have worked with children on the autism spectrum, so I do have some idea of what you are concerned about.

All I would say is that at stage 3, there is every chance your daughter may stay reasonably well for many years yet and you may not have to make any changes for a while. Be open with her renal team about her struggles: they may not fully understand your situation. I guess any changes in routine and diet will have to be made gradually, so again have an open conversation with your daughter's dietician. As I said, at stage 3, you may not need to do anything. But at least they will be keeping a close eye on her and you can be prepared in advance. I wish you both well.

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