1. Community
  2. Genito-urinary/Kidney
  3. Kidney Problems

My daughter was diagnosed with NS a week ago

Posted , 3 users are following.

Elah
Elah

hi all,

I am desperate to get some help please.

my 3 years old daughter has been diagnosed with nephrotic syndrom a week ago. She is on 50 mg of steroids and penicillin. 

She he's been taking her medal for a week now but protein levels are still 5.0 every morning and her swelling is still very visible on her tummy and legs.

she needs to be on reduced fluid consumption and low salt and protein diet.

we are so confused what to give her to eat now as everything contains salt, protein and sugar.

pls can someone recommend some healthy diet plan.....iam so confused.

looking forward to hear from someone soon PLEASE

many thanks ela

0 likes, 8 replies

8 Replies

  • savannah77189
    savannah77189 Elah

    Posted

    Same thing happening with my daughter except the pretensions wasn't working so tomorrow they are doing a kidney biopsy to be able to find the underlying cause of it. It is no joke a life changing thing. Fresh vegetables and fruits roasted chickens, turkeys, and Mrs. Dash. Homemade everything. God bless ur baby girl if you need anymore help from me I will be more than willing to talk to someone else about it. It has broke n my heart. But a children's hospital is where u need to be. Don't try n fix it at home

    • Elah
      Elah savannah77189

      Posted

      Hi, thank you so much for your email. 

      Hope they will find underlying cause of NS for your daughter. 

      things has changed for Louisa. Suddenly on Sunday she woke up around 3 am to do a wee. Couldn't believe it...as whole week she was hardly using toilet. 

      The protein levels got lower as well on Sunday morning 

      and today we are on the second day without protein in her wee.

      very quickly she has lost all her swelling ( like 2 days) and doing wee regularly.

      but now she is constantly hungry....... waiting for an appointment with a dietitian to come up with her diet plan.

      at the moment she is having rice with chicken and veg and next day pasta with veg.

      its so difficult ......she was never keen to eat veg so at the moment she is not happy what she eats 

      what snacks you giving your daughter apart of fruits ofcourse.

      hope they will sort her meds out etc.

      keep me posted it's so nice to talk to someone ......

      speak soon 

      ela

       

  • Roula
    Roula Elah

    Posted

    I am really glad to hear the good news!!! The fact that she started using toilet is very encouraging!!

    It breaks my heart to hear that story again and again. My daughter went through all these and I know by heart how you feel. I wish doctors do their "magic" and find the cure and hepl all the kids and their families.

    All the thoughts, guilties, whys....But don't give up she needs you. 

    Diet is a good start and light exercise as it is in all cases be careful not all nutricious foods are good for her condition. An experienced nutricionist will help you find what is the best. Even if you can afford it I am sure that there is someone in hospital. Ask her doctor too. 

    I fully agree with savannah77189. I hope her doctor is an experienced one because it is very important how he/she will handle medicines.

    After all medicines, blood tests, biopsy...there are good news...the most children finaly get over it. 

    Think possitive and everything will get better.

    • Elah
      Elah Roula

      Posted

      Hi thank you for your message.

      yes will def ask for nutritious advice.....I know how important right food is in this condition.....but it's just unbelievable that the doc in hospital not sorting it out for you.....I went to go and ask for some help with feeding Louisa. It's so difficult.

      havent heard anything yet so trip to go surgery is essential tom. 

      Hope everyone is getting better xxxxxxx

      louisa had trace of protein in the morning, loads of protein in the afternoon and nothing in the evening......it's so confusing

      speak soon x

       

    • Roula
      Roula Elah

      Posted

      I know same things happens to all of us. I understand but do test protein only in the morning ...until she comes in a stable situation proteins go up and down.

      She will get better but you dont know when that is what killing you. Just keep the good news..she uses toilet. Go step by step you both need your strenghts.

      Did doctors ask you to messure quantity?

      It is also important. Find out how much she has to wee. If she is not responding in treatment more than a month go to the hospital there are other treatments that can help her. It is not the end of the road. She may just need another treatment.

    • Elah
      Elah Roula

      Posted

      Hi, 

      she has got trace of protein in her wee.......but we still waiting for no proteins in the wee 3 days in a row, then she can stop taking penicillin......

      we going for another check up tom so hoply all good and she is improving.

      she looks well now and is very active 

    • Elah
      Elah

      Posted

      She has till got 2 weeks of steroids every day. After then doc will asses her and decide if give her another meds or hoppy she won't have protein at all....fingers crossed

      hope everyone is better xxxxxxxx

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.