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Pediatrics Treatment for juvenile patients

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  #1  
Old Sat Mar 31, 2007, 02:22 AM
AZDreamer AZDreamer is offline
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Red face Any ideas on getting kids to Drink their fluids?

I'm a relatively new member to the forum and this is my first post. My 8 year old daughter was diagnosed with Severe Aplastic Anemia in April of 2006. As you can probably relate, it turned our lives upside down. She underwent a round of ATG (Horse Serum) and it failed. We were faced with the difficult decision of trying additional round of ATG (Rabbit) or BMT. The doctors advised us that they didn't think the ATG was going to do anything the second time around. Our other daughter (3 years old) wasn't a sibling match, so we decided to try and find another donor. We were extremely fortuneate and lucky as five potential donors were initially identified as matches for her. After reviewing their medical history's, etc... it was determined that a 37 year old male (CMV negative) would be the best donor. 10/10 match. So we proceeded in the month of September 2006. It was a very long road and we are far from over. The BMT did work, but she has had several setbacks so far to name a few.....severe GVHD in the gut (dx in November), Epstein Barr Virus (mono) was positive and treated with Rituskin, and recently it was determined that her kidney's are only functioning at 50%. Prior to transplant they were at 90%. She has been on CSA since April of last year and the other meds she's on is a low dose of Prednisone daily, Septra (2xday), Folic Acid, and Vitamins. Not much now compared to right after transplant.

My daughter recently returned to school, after being out for almost one full year, and just completed her second week. She must drink 2 Liters of fluid per day. This can be Otter Pops, Jello, Pudding, Ice Cream, or someething to drink. It's been a struggle to get that down her when she was at home, but she did it. Since she's returned to school she cannot remember to drink as much on her own. I've tried to involve the teacher, but it hasn't really worked out. I ordered a watch for her that will vibrate at whatever pre-sets I set it at, so she can wear it at school and act as a reminder to drink. It should come in next week. Is there anything that you guys can think of to help me figure out something that will work to get her to consume 2 Liters per day?

I don't think she fully gets how serious this is and have tried to talk with her, reward systems, as well as not providing her with rewards (like going to a birthday party if she doesn't comply) That last one sounds harsh, but I'm at a loss for what to do....... Her Creatine level was 1.7 today. (Her baseline usually runs 1.2 or 1.3). She has the beginning signs of Renal failure and I don't know what to do.... I have to get her drink alot this weekend and then she's going back in on Monday to get retested again. Platelets have been in the 230,000 range for quite some time, Hemoglobin just recently climbed from in the 7's to the 9's by themselves, WBC and ANC are still unpredictable and range from 1500 to 3800. Her catheder line came out two weeks ago as it was infected and she also wanted to go back to school. So we can't just hydrate her easily overnight. The doctors are talking about potentially putting and NG tube in her. That poses all types of other issues..... HELP......
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  #2  
Old Sat Mar 31, 2007, 08:48 PM
Ruth Cuadra Ruth Cuadra is offline
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Hello and welcome to Marrowforums. We have several members who are parents of pediatric patients who I hope will chime in with their suggestions, but I thought I'd share some ideas with you myself. I remember the pressure to drink enough when I was on cyclosporine for months after ATG. It is hard for an adult to consume enough to keep their creatinine down. It must be especially challenging with an 8 year old who probably wants nothing more than to be like her friends and forget all this medical stuff!

Your daughter may still be young enough to respond to some standard tricks of parenting that include involving her in planning how to drink enough at school. Go through her day with her and have her suggest times she could stop and drink a little. Add your own suggestions but keep her in charge of the planning. To engage the teacher and help your daughter feel in control, meet with the teacher and have your daughter describe her plan and give the reasons why she knows it's important.

Some other ideas come to mind:
  • have her drink very small quantities more often--even as little as 2-4 ounces an hour will go a long way toward meeting the goal of 64 ounces a day
  • make a game out of drinking from small, interesting containers like measuring cups or grown-up coffee mugs
  • fill a jug with 64 ounces of water at the start of a day and each time she takes a drink, remove that amount from the jug. She'll see her progress and her goal at the same time.
On the medical side, have her doctors considered switching her from cyclosporine to Cellcept (mycophenolate mofetil)? I made that switch after my transplant when gut gvhd was a problem. The doctors thought Cellcept would be more effective against gvhd and a side benefit was that it was less stressful on my kidneys.

Hope this helps. Please let us know how your daughter is doing.

Regards,
Ruth Cuadra
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  #3  
Old Mon Apr 2, 2007, 09:37 AM
fibogann fibogann is offline
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Broader Perspective of Pediatric Care

Hi AZDreamer,

I believe most of us who are caregivers to children with AA would emphatise and understand how you feel and what you are going through.

Perhaps it is always good for parents to have a broader perspective of care for a child with AA, especially after a BMT or IST, because, while getting a child to drink more often is very necessary to flush the kidneys, there is a need to take a much broader outlook... which is FULL or COMPLETE nutrition needs for the child with AA especially after a BMT or IST. This would involve muscositis care, GVHD identification and care, nutritional needs eg food , diet guidelines.

In this respect, there is a good report by Patricia Sheena from the University of Illinios at Chicago, Nutrition Department which will provide guidelines on the above.

You can either purchase a reprint which is found in "Nutrition Issues In Gastroenterology Series #26", or if you care to leave your actual name and email address, I'll be most happy to point you to the location to download a free copy, if you feel this document is of interest to you.

Hope this helps.

Regards,
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Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
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  #4  
Old Mon Apr 2, 2007, 03:45 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by fibogann View Post
You can either purchase a reprint which is found in "Nutrition Issues In Gastroenterology Series #26", or if you care to leave your actual name and email address, I'll be most happy to point you to the location to download a free copy, if you feel this document is of interest to you.
This is a good opportunity to remind everyone that forum members can send personal contact information to each other without posting them publicly, using the Marrowforums Private Message system.

It's quite easy. Just click on the other member's User Name above their post, and you'll see "Send a private message to" in a pop-up box.

For further details, see our Frequently-Asked Questions Member-to-member Communications page.
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  #5  
Old Tue Apr 3, 2007, 07:22 PM
fibogann fibogann is offline
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Report on Nutrition Support for Bone Marrow Transplant Receipents

Hi AZDreamer,

After clarification with Neil Cuadra, one of our moderators in this forum, I understand it is OK for me to post relevant links here, and so, here is the link for you to read or download that report on Nutrition Support for Bone Marrow Receipents, without the need to leave your contact address, which I hope will be of use to you with the care of your child.

CLICK TO READ/ Right click to download

All the best!
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Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
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  #6  
Old Thu Apr 5, 2007, 08:11 PM
mo_shane mo_shane is offline
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hi AZDreamer,

i can completely empathise with you. my son also had a BTM and trying to get him to drink was a nightmare. not only drink, but take medicines too. saying your daughter had a transplant in september and is back to school already is remarkable! you have to cling onto these important milestones

my son shane was much the same. he had his BMT in november 2004 and returned to school in may 2005 - just for 3 mornings a week up until the summer holidays in june. he returned full time for the next term. but what a problem it was getting him to drink. like you, i searched for ideas. whatever drink he wanted he had - in abundance. if he changed his mind and went off one particular drink, i would replace it with another. and so it went on. on his checkups the doc often threatened with bringing him back in and putting him on a drip. he had his central line in until his 6 month checkup in june. i'm sure he thought they were just threats until they actually did it! he was devastated to be back in just because he couldn't drink enough. but it did hit home. rather drastic i must admit and obviously dangerous for him too.

when we returned home, i was completely at a loss. ruth mentioned about placing a jug out with the amount to drink in - my idea was along similiar lines. i explained that i had exhausted every option of drink and now we were back to basics - water, and that was all he was getting. forget the fancy drinks! i produced a 1.5L bottle of water, put it in front of him and told him he had to drink that every day. coupled with his morning cereal (including the milk) and his orange juice, he would hit his 2L mark. he actually agreed it was easier as he could keep a better track of it and from that day we never had problems with him drinking his 2L a day. he drank so little when at school that i disregarded it.

another suggestion - get the doctor to talk to your daughter about how important it is to drink and explain in simple terms why she must drink. i know she is only 8 and shane was 10 then, but still, she will understand. we did that with shane, especially with regards to taking his meds. the doctor came in and sat with him with several sheets of paper. shane had to write the name of each drug at the top of each sheet and with the help of the doctor, he wrote down the reasons why he had to take them. and more importantly, what would happen if he didn't take them. it was the same with the drinking too. that, coupled with the return to hospital, helped us lots.

this may not apply to you, but it certainly did us - the emotional issues following a BMT. in a nutshell, shane was used to having me 24/7 and not sharing me with his brothers or anyone else. when he was in hospital, i took on the role of giving his meds and pushing him to drink. he hardly ever washed or brushed his teeth - that was another nightmare. so to come back home and have to fit back into your routine was something quite difficult for him. by holding back on taking his meds and not drinking, he was assured of my constant attention - even if negative. i think i helped turn that around by praising him plenty for every right move, every step of the way. i involved his brothers and all family members too (i'm a single parent).

i wish you the best and understand how difficult it is.


gina x x x
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  #7  
Old Sat Apr 7, 2007, 01:34 AM
skoopman skoopman is offline
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Add me to the list of parents who have had to force their kids to drink. My daughter is 6 years old. Before she went back to school it was pretty good but as with others was a hassle once school started back up. I was lucky in that her teacher understood and reminded Michelle during the day to drink her water. I also include a small bottle of water with her lunch that she drinks. I could get her to drink about 16-18 oz a day while in school. Once she gets home from school the first thing she does is wash her hands, then I give her a glass of water.

The other huge thing I did was show her the spreadsheet we have of her lab numbers. Her creatinine was higher than the dr would like it and the upper limit was a red line. She was able to see that her values were above the red line. I was surprised that worked but she was really interested to see that and it made her drink better.

I can't believe any 8 year old would like the idea of an NG tube. Can you threaten her with that? I used that threat when Michelle had gut GvH and wouldn't eat.

Good luck!
Suzanne
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Mom to Michelle, age 7, SAA 6-1-05, rabbit ATG 6-3-05, MUD BMT 11-11-05
www.carepages.com Page name, Michelle5
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