HELP

[JESSE]

MY NAME IS MICHELLE MY 12 YR OLD DAUGHTER WAS DIAGNOSED IN DECEMBER WITH A KIDNEY DISEASE CALLED ANTIGBM SHE IS ON A FLUID RESTRICTION OF 1 LITER A DAY I KNOW ITS HARD TO FOLLOW IT BUT SHE HAS TO AND SHE KEEPS DRINKING MORE THAN THE DOCTORS SAY TO I AM AFRAID SHE WILL MAKE PROBLEMS WORSE BECAUSE THE DOCTORS SAY IF SHE KEEPS GOING OVER ON THE LITER SHE COULD HURT HER HEART AND LUNGS ANY ADVICE

[paul.karen]

You could ask her to join this forum.
Read about people who have been there and done that.  it is good that you found us and it is hard for a child to think so far ahead in life.
Nice to meet you Jess.  Hope to see Michelle join as well.

Plenty of good info here.
But it is even hard for a grown up to follow such stringent guidelines.

[Inara]

First, I'm so sorry about your daughter.  It's hard for adults to follow a renal diet/fluid restrictions, much less a child.  She can do it!  But she'll need your help.

Second, "shouting" is kinda frowned upon in most internet forums.  To "shout" is posting in all capitals.  It's considered rude. 

Third, there are resources and people here who can help you.  Please post often, read a lot, and lean on the IHD community.  Learn as much as you can.  Be sure to visit the "Caregiver/Spouse" section.  If anyone can educate you and help keep you emotionally strong, they are here.

There are tons of recommendations for problems with feeling thirsty:  freezing grapes, ice chips, etc.  But ultimately, it's up to you (and your daughter) to stick to the fluid restrictions.  Don't let your daughter get overheated, don't let her play outside during the hottest time of day. 

Best of luck to both of you and hope to see you posting soon! 

 

[Romona]

 

[glitter]

Hi      


and don't forget about salt- limiting salt will definitely make a difference in how thirsty you get.

[willowtreewren]

Hi, Jesse.

 

I'm glad you found us. I am a caregiver to my husband. I have learned so much helpful information here. this is a great place to be.

Read through the various threads and post often. Hopefully Michelle will join, too.

Aleta

[MIbarra]

It is so hard not to go over your fluid limit!

Tell her to try things like sucking on ice, or freezing her fluids and drinking them as they melt. Frozen grapes are good too. Sugar-free gum, swishing with mouthwash.. Those all helped me when I wanted to down a tall glass of tea while on dialysis!

Unfortunately you can't watch her 24/7 so she's going to have to watch things for herself too. Joining the group was a good suggestion. Hearing from others with the disease helps to not feel so alone.

[Hanify]

Hi and welcome.  I also have a 12 year old daughter.  Maybe they could become internet friends?  Let me know if your daughter is interested.  So hard - the 1 litre thing.   feel for her.

[Yvonne]

  I am a carer to my husband and this site has been my life line, every one is so helpful  Yvonne the wife

[Des]

I know how hard it can be.....

She can keep her favourate (kidney friendly) drink in a spray bottle in the fridge and spray it in her mouth when she feels like drinking somethin.

Too much fluid can place unnecacary (spelling ) strain on her heart.....

Good luck   

[Chris]

To be the devils advocate, she may need to love if she can't get over this hurdle. Meaning she may need to experience the pain of going over the fluid limit and when this happens, if the doctor is not doing this now, he/she needs to talk to her and explain things one on one and not to you. Just step out of thee room and listen. A hospital stay maybe all that is needed to kickstart the correct thought process of "I don't need to do that again". Also check out your local National Kidney Foundation or other kidney organizations in your area for possible information for kids to attend and learn. Maybe she needs to hear from someone close to here own age of the trial and tribulations of renal failure and need of coherence.

Good Luck

[JESSE]

sorry about the  capitals she has been in the hospital for 2 months and been hospitalized  for hypertension  twice i love the water bottle idea thank you 

[Epofriend]

  Jesse,

It makes me sad to see kids having to go through this, having to understand and demonstrate the responsibility that comes with age. There were some good suggestions in the other posts and I wish you the strength any parent needs, but especially a parent trying to guide a child into as healthy an adulthood as possible in the face of kidney disease.

We're here for support and information, and there are a number of younger members too should your daughter be interested in reading and posting. Not everything here is serious, the off-topic thread is open to just about anything.

Epofriend, Moderator

[Maxridex]

I'm sorry to hear that. I have restricted fluid of 400ml a day... so your daughter have twice more than me. Well it's difficult for a normal person to having a kidney disease. Hope your daughter get well soon.
And..