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drink question?

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  • Crystal
    My daughter, Tatiana, is blind from brain surgery that she had when she was 8 months. She is almost 2 now. She has been diagnosed with optic glioma juvenile
    Message 1 of 5 , Dec 16, 2005
      My daughter, Tatiana, is blind from brain surgery that she had when
      she was 8 months. She is almost 2 now. She has been diagnosed with
      optic glioma juvenile pilocytic astrocytoma, nystagmus, optic atrophy,
      diabetes insipidus, and panhypopituitarism. She is developmentally
      delayed and she won't drink anything except for breastmilk from my
      breast. I know that breastmilk is wonderful for her and I want to
      continue to give her this nutrition, but she needs other fluids in
      her. Her medicine she is taking makes her constipated and her stools
      are bloody from being hard to get out (sorry about the graphic
      description). I want her to drink water or diluted juice but she will
      not take a cup or a bottle. Her doctor keeps telling me she needs to
      drink more water, but I do not know how to get it down her. Also, she
      needs to go on a 4 day trip with her father in January to get some
      therapy and she needs to learn to drink from a bottle or cup by then.
      Please help!

      ~Crystal
    • Kim Troutman
      Will she suck on a popsicle? You could make your own juice pops with apple juice or grape juice. That is what they suggest when a child is sick and needs
      Message 2 of 5 , Dec 16, 2005
        Will she suck on a popsicle?  You could make your own juice pops with apple juice or grape juice.  That is what they suggest when a child is sick and needs fluids.  As far as getting her to drink from a cup, will she use a straw?  They have sippy cups with built in straws.  That's all I can think of.
         
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        ----- Original Message -----
        From: Crystal
        Sent: Friday, December 16, 2005 10:47 PM
        Subject: [Special_HS_OR] drink question?

        My daughter, Tatiana, is blind from brain surgery that she had when
        she was 8 months. She is almost 2 now. She has been diagnosed with
        optic glioma juvenile pilocytic astrocytoma, nystagmus, optic atrophy,
        diabetes insipidus, and panhypopituitarism. She is developmentally
        delayed and she won't drink anything except for breastmilk from my
        breast. I know that breastmilk is wonderful for her and I want to
        continue to give her this nutrition, but she needs other fluids in
        her. Her medicine she is taking makes her constipated and her stools
        are bloody from being hard to get out (sorry about the graphic
        description). I want her to drink water or diluted juice but she will
        not take a cup or a bottle. Her doctor keeps telling me she needs to
        drink more water, but I do not know how to get it down her. Also, she
        needs to go on a 4 day trip with her father in January to get some
        therapy and she needs to learn to drink from a bottle or cup by then.
        Please help!

        ~Crystal



      • Connie Kyker
        I recommend a search on http://www.kellymom.com/ . You also might want to try going to www.babycenter.com and getting on their extended breastfeeding site.
        Message 3 of 5 , Dec 17, 2005
          I recommend a search on http://www.kellymom.com/ . You also might want to try going to www.babycenter.com and getting on their extended breastfeeding site. Those women are extremely knowledgeable and encouraging when it comes to nursing toddlers. http://bbs.babycenter.com/board/toddler/toddlerbreastfeed/5811 If for some reason you can't get into this site I would be happy to post your question for you and let you know what advice they give.
           
          Breastfed babies and toddlers do NOT need water. Breast milk is 88% water. As long as you are offering breast milk as often as she is thirsty she doesn't need additional fluids.
           
          You can give water with a spoon or a dropper.
           
          Occasionally a baby will refuse to drink from any type of cup or bottle. In this case, try feeding baby breastmilk with a spoon, dropper or syringe. If baby has started solids, mix the solids with lots of breastmilk. You might also try a momsicle, ice cream, yogurt or a smoothie made with breastmilk.
           
           
           
          I hope that is helpful.
          Connie
          -----Original Message-----
          From: Special_HS_OR@yahoogroups.com [mailto:Special_HS_OR@yahoogroups.com]On Behalf Of Crystal
          Sent: Friday, December 16, 2005 10:48 PM
          To: Special_HS_OR@yahoogroups.com
          Subject: [Special_HS_OR] drink question?

          My daughter, Tatiana, is blind from brain surgery that she had when
          she was 8 months. She is almost 2 now. She has been diagnosed with
          optic glioma juvenile pilocytic astrocytoma, nystagmus, optic atrophy,
          diabetes insipidus, and panhypopituitarism. She is developmentally
          delayed and she won't drink anything except for breastmilk from my
          breast. I know that breastmilk is wonderful for her and I want to
          continue to give her this nutrition, but she needs other fluids in
          her. Her medicine she is taking makes her constipated and her stools
          are bloody from being hard to get out (sorry about the graphic
          description). I want her to drink water or diluted juice but she will
          not take a cup or a bottle. Her doctor keeps telling me she needs to
          drink more water, but I do not know how to get it down her. Also, she
          needs to go on a 4 day trip with her father in January to get some
          therapy and she needs to learn to drink from a bottle or cup by then.
          Please help!

          ~Crystal



        • Carol Ruth Blackman
          Crystal, After seeing some other posts in response to your question, the idea of a small momsickle sounds great, as she d recognize the taste, also after she
          Message 4 of 5 , Dec 19, 2005
            Crystal,

            After seeing some other posts in response to your question, the idea of a
            small "momsickle" sounds great, as she'd recognize the taste, also after she
            accepts it, if you could add some flax oil that would help lubricate the
            bowels and soften the momsickle. However with flax oil, get only the cold
            pressed form in the frigerated section and AVOID any that contains ROSEMARY
            as it's really hard to get a child (or an adult) to take that flax oil as
            the rosemary is so overpowering. Spectrum or Barlean are good brands of
            flax oil with mild taste. It may be you will need to add flax oil or extra
            magnesium to your diet so that it passes through to her through your breast
            milk. Too bad the medications make it so hard for her to pass her bm. Many
            drugs have this negative side effect. OXYflex was made specifically to help
            people be able to still have normal bm's in spite of their medications
            however it's in a capsule and if she only nurses, it would be hard to get it
            into her system. It's made in Hillsboro, 503-648-2945 is their phone #.
            The naturopath put my son on it when he went for a month with no bm a couple
            years ago. None of the pediatrician's prescriptions helped, and he was
            allergic to almost all of them so it was a really difficult time for him/us.
            (He'd fallen and dislocated his tailbone so lost peristaltic motion in his
            colon for a few weeks we discovered after going to the naturopath). Even
            though he drinks about 60 oz of water daily, he still requires 3 of these
            OXYflex daily to keep his bowels moving daily -- just something unusuable
            about his system.

            I nursed him for over 3 years (of course I didn't let the dr know after 18
            months!). It seemed to be his only comfort and the only time he could calm
            down from his hyper ways was when he was nursing.

            Be sure to eliminate rice and bananas from both your diets as they tend to
            increase constipation. I couldn't believe bananas could do that when I
            first read that years ago, but I've seen it in print many times, that if one
            is getting over diarrhea, to use rice and/or bananas to firm up the stools
            and to avoid those when constipated.

            I doubt anyone on this group was offended by mentioning your daughter's
            problem. Most of us with special needs kids have conversations about these
            things with others so frequently we don't have a problem talking about such
            things. :-)

            Have you tried the little Playtex bottles with the odd shaped little
            nipples? That was the ONLY bottle my son would take the first 3 years of
            his life and it took more than a year to get him to take it. Try putting
            something tasty on the outside of the nipple to get it inside her lips.

            Can you pump ahead in the night for when she has the surgery? She's going
            to need comfort food at that time especially so she can thrive.

            I was going to suggest Rice Dream tastes the closest to breast milk (or did
            back about 1995), but it is made from rice, so that could add to the
            constipation. It also contains gluten (something my son can't tolerate so
            we quickly quit using it). You might try an almond milk or lite soy milk
            product, they may taste more like your breast milk than regular soy milk or
            cow's milk would. Cow's milk doesn't taste like breast milk and it's
            constipating also.

            Trying getting some diluted prune juice in with a tiny baby spoon or
            dripping it with an eye dropper into her mouth while playing with her might
            get her used to accepting that taste.

            May the Lord give you wisdom and help her to accept the new liquid into her
            diet. My son refused water from about age 2 - 7 and I sure admired moms who
            could get their kids to drink water! Now he drinks it well but he's a young
            teenager and knows he HAS to.

            Blessings,
            Carol
            ----- Original Message -----
            From: "Crystal" <websurfergirl19@...>
            To: <Special_HS_OR@yahoogroups.com>
            Sent: Friday, December 16, 2005 10:47 PM
            Subject: [Special_HS_OR] drink question?


            > My daughter, Tatiana, is blind from brain surgery that she had when
            > she was 8 months. She is almost 2 now. She has been diagnosed with
            > optic glioma juvenile pilocytic astrocytoma, nystagmus, optic atrophy,
            > diabetes insipidus, and panhypopituitarism. She is developmentally
            > delayed and she won't drink anything except for breastmilk from my
            > breast. I know that breastmilk is wonderful for her and I want to
            > continue to give her this nutrition, but she needs other fluids in
            > her. Her medicine she is taking makes her constipated and her stools
            > are bloody from being hard to get out (sorry about the graphic
            > description). I want her to drink water or diluted juice but she will
            > not take a cup or a bottle. Her doctor keeps telling me she needs to
            > drink more water, but I do not know how to get it down her. Also, she
            > needs to go on a 4 day trip with her father in January to get some
            > therapy and she needs to learn to drink from a bottle or cup by then.
            > Please help!
            >
            > ~Crystal
            >
            >
            >
            >
            >
            >
            >
            > Yahoo! Groups Links
            >
            >
            >
            >
            >
          • Crystal
            Carol, Flax seed oil sounds like a great solution. I will try it. She is not going into surgery...it is a noninvasive therapy that she is going to in PA. Since
            Message 5 of 5 , Dec 20, 2005
              Carol,

              Flax seed oil sounds like a great solution. I will try it. She is not
              going into surgery...it is a noninvasive therapy that she is going to
              in PA. Since I won't be there with her she needs something that can be
              easily given to her by her father. I have even tried breastmilk in a
              bottle and sippy and she wouldn't take it. Thanks for the suggestions,
              though!

              ~Crystal
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