Dani

[lola]

Well we just found out dani's hemoglobin is 11.2  that means the Iron pills are working I was so worried she to would have to start shot's like Otto and we didn't want to have our 5 yr old go through that. Since she's been off the high blood pressure meds she's perked up and her mood swings have settled Thank God!!!! They love her at the lab because she has to watch everything and loves to see her blood fill all the tubes, plus when there done she wants to do it again so she get's more stickers, of course they give her as many as she want because she's just so darn cute.....

[Sluff]

Great news, she sounds like a good sport. 

[goofynina]

Great news Dani (and Lola)  thank you for keeping us updated 

[Ohio Buckeye]

good, I'm glad she doesn't have to do shots.
glad she handles the blood tests so well.
Many of us should have lessons from her.  lol

[MyssAnne]

Yay!!! That's good news!!!!    And soo cute that she likes to watch it!! Yuck!!! Good for her!!!  I'm glad for you that her mood swings have stablized too!

[Wattle]

Great news Lola, Otto and Dani!! 

[vandie]

That's great news Amy.   

[angela515]

Yay!

[okarol]

  She sounds like a great kid!

[lola]

Well Dani comes off Iron pills on the 5th and I'm starting to freak, they want to see if she can maintain her hemoglobin on her own she's at 11.2. She has Neph appt in Dec and they'll check her then unless she starts getting really tired again then they'll check sooner. Is it bad that I'm pissed there doing this to her? I mean I know we mess with Otto's meds but it's diffrent he's an adult I can't stand that we are doing this to my baby. So say a pray she can maintain on her own.





EDITED: Fixed  icon error - Sluff/ Admin

[Romona]

Hopefully it will stay good! She sounds like a little Princess!

[goofynina]

I sure hope and pray that those docs know what they are doing (and i am sure they do)  And yes Lola, you have every right to feel how you are feeling, and remember, ask ALOT of questions and dont you leave until you get ALOT of answers.  My prayers are with you all 

[Sluff]

I know you will do your very best to protect your daughter but unfortunately some things are out of our control. I hope things will look a little brighter for Dani, it is hard when this crap attacks a child but all we can do is offer positive thoughts and prayer. Here's to good news at the next Dr's visit. 

[lola]

Dani's hemoglobin is up to she'll stop her Iron on Friday and see if she can maintain it on her own

[goofynina]

  Best news i have heard all day Lola, thanks for letting us know    

[lola]

Well Dr just called and Dani will NOT stop her iron pill. One test they were waiting for just came back and even though it's in "normal" range it's on the low side and he's afraid she'll go down hill if we stop. Not sure how I feel I'm glad they are watching her so well but sad she has to go through this.

[goofynina]

Awww Lola, i am sorry Dani has to go through this too, hopefully they will fix whatever it is that needs fixing so that way she will grow up and not have to go through any of this crap    My thoughts and prayers are with you all my friend 

[Amanda From OZ]

I'm sorry to hear that Lola. I hope it can fix it self up soon. Dani is definitely too young to be going through all of this. 

Thinking of you all.

 

Amanda
xxoo

[lola]

Well we go see the Neph on the 18th and Dani has been on Iron pills since July and it's help, But I'm wondering if it's best to keep her on it. She gets a "icky" tummy and some days her poop(sorry) is like rocks other days it's runny(sorry), this is why Otto stopped taking them and just gets his Arsenip shot every 4 weeks and has not had any problems. Now I'm wondering if this would be best for Dani also? I just want what is best for her and don't know what that is, have any of you had problems with Iron pills and chosen to stop and just do shot's?  Thanks for your help

[kidney4traci]

I used to take the iron suppliments but they are not absorbed as well.  I just finished 5 weekly visits and got 200 mg of the iv type (sorry, forgot the name) and my labs finally came back positve.  Hope that helps.

[lola]

Awww Lola, i am sorry Dani has to go through this too, hopefully they will fix whatever it is that needs fixing so that way she will grow up and not have to go through any of this crap    My thoughts and prayers are with you all my friend 

Thanks but they can't fix Alports so I will be going through it with her too







EDITED: Fixed smiley error-kitkatz,moderator

[Wattle]

I used to take the iron suppliments but they are not absorbed as well. 

The same for me. I started taking Arenesp about two years before dialysis and continue to. I also have an iron infusion every six months or so.

Ask what are the other options for Dani. I do the injections myself and its pretty easy. I am sure you would have no trouble doing them. The iron pills are annoying.   

[Romona]

Dani is such a trooper. I had arensp, IV iron and of course those nasty pills. I bet she handles this better than all of us so called "Big People". I read some where that chewing gum with zylitol (not sure the spelling) will help soften hard stools from iron. It helped me some.

[lola]

Dani is such a trooper. I had arensp, IV iron and of course those nasty pills. I bet she handles this better than all of us so called "Big People". I read some where that chewing gum with zylitol (not sure the spelling) will help soften hard stools from iron. It helped me some.

She's amazing, they fight over here in the lab because #1 she's so cute #2 she is so good about her blood draws. I really can't give her anything since sometimes she has hard stools other times loose. I just hope we can try something diffrent.

[lola]

Dani just had labs done so keep your fingers crossed, we see her Neph nest week. There was another little boy waiting and she asked the mom if he wanted to watch her since she's a pro, She's so cute!!!!