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Thread: What do you give your children for the chronic constipation?

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    Default What do you give your children for the chronic constipation?

    Tyler has been on Miralux for years and we want to try something more natural. I have looked up ideas on the net, but the results are always for mobile, healthy children, not like Tyler. There has to be something else out there that can be used long term.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie)))))) ~

    Oh, the battle of constipation! I know it well. We nixed Miralax, because it caused excess gas in both our boys. We used stool softeners (docusate calcium or sodium). Fleet enemas. Glycerin suppositories. Milk of Magnesia.

    Still, constipation continued. Michael had terrible, painful hemorrhoids, and Jon ended up with a twisted sigmoid colon and a colostomy.

    From the G Tube forum years ago, I collected a list of options tried (with success) by various members. They include:

    Fruit Eze ~ I used this with my boys, when they ate a pureed diet. But you can make your own fruit eze in the blender for the G Tube.

    http://fruiteze.com/

    Celery Water ~ Using your VitaMix (or blender), place one stalk of celery, chopped, and 1 cup water. Blend until celery is completely blended.

    Blenderized Fruit Combo ~ Skins on: pear, apple, papaya, water

    Elderberry Juice

    Blenderized Juice ~ beet, celery, kale, apple ~ give first thing in the a.m. an hour before first Tube feeding.

    Mineral Oil ~ via G tube (I don't know the amount to give)

    Blackstrap Molasses

    Benefiber

    Yogurt

    Acidophilous

    Unsweetened Pumpkin

    Senna

    We've noticed that Jon's bowels are moving better now that we are doing the lymphedema massage every day.

    How is Tyler's UTI? Did they identify the right antibiotic for the bacteria?

    Prayers continuing ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thanks Rose. I will check into these. Tyler was put on Cipro for 14 days, and it finally cleared up the latest UTI, the only other options were IV doses. Not holding our breath how long the respite will last though. Trying a new MMJ called Jayden's Juice. Hoping for better results than we got with CWHO. MMJ can also cause constipation, so we have to watch carefully. Tyler doesn't need any more problems. Just trying to cover all our bases for now.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie)))))) ~

    Wonderful news that the Cipro cleared up the UTI. What about the kidney stones? Any further opinions by the doctor on that?

    I had no idea that MMJ could cause constipation. From my experience, all seizure meds caused it. But the main factor is lack of mobility for my boys. Poor tone. Poor motility.

    I will pray that Jayden's Juice works for Tyler without constipation issues, and that the Cipro knocked out the nasty bacteria for perpetuity.

    Please keep us updated!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Tyler had a lousy day and night. Within 30 minutes of giving him the Jayden's Juice he was seizing uncontrollably. Withheld nearly 800 cc's of urine, was in a cold sweat and shrieking. Temp went up. Have no idea what is going on with him. Wonder if he inherited my inability to take meds. Of all people to pass this on to, why did it have to be Tyler. We are averaging about 4 1/2 hours of sleep a night. This young man needs a break.

    Urologist still isn't concerned with the kidney stones and totally disagrees with the infectious disease doctor about the stones being the source of the constant infections. As long as they are not blocking the ureter or doing damage in the kidneys, they will stay where they are. I think the entire medical community is terrified of doing any surgery on Tyler. They don't want the liability. Same problem with the orthopedic surgeon. I can see the kyphosis getting more pronounced and yet we are being told that there is no change on the X-ray. So very frustrated right now.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    I don't have constipation and I don't know squat about tube feeding. However if you can put things from a blender into feeding tubes I would suggest the Nutribullet. Look it up on google. It smoothly blends vegetables in a way where the fiber remains and it really improved my bowel movements ten fold. I have to wonder if the doc's think surgery on Tyler is useless. So sad and infuriating.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Tamie)))))) ~

    Oh, I'm so very sorry to hear this. I wonder whether Tyler's reaction to Jayden's Juice might be an allergic reaction? Maybe he's allergic to hemp? Does he have any allergies?

    Are the seizures the reason he's withholding so much urine? I would guess that would account for the shrieking, sweating and fever. The two combined, that is ~ seizures and urine retention.

    As long as it is placed properly and is the correct size, an indwelling cath drains continuously. That eliminates the issue of withholding urine, unless there is a blockage or some other systemic reason (like the kidney stones or kidney function).

    It burns me up when doctors refuse treatment or care, because they fear malpractice, when treating a person with multiple, complex medical issues. First do no harm means treat everyone equally and with the greatest effort to heal them. Allowing patients to suffer, because you're afraid to treat them violates that oath.

    Any possibility to get second opinions from a urologist, nephrologist, infectious disease doc, and orthopedic surgeon? Can Tyler change medical plans? If he can get into the St. Joseph system, I'm sure he will receive better care. If you lived near us, I could refer you to some excellent physicians, who would care for Tyler and you and Jerry.

    Prayers are continuing ~ you all need a break.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    ((((Tamie))))

    Sorry to hear Tyler is not well. Caitlin has always had terrible constipation. She has been on miralax for a long time now, since about 2008 or 9 if I remember right. That was when we found the GI department at Children's. Before then, we had always always asked every doctor we met about her constipation and no one gave us any good answers...just all the standard natural stuff like prune juice, increase the fiber, enemas, glycerin suppositories, stool softeners etc. None of it worked for Caitlin and we tried everything and anything that could be found over the counter! She just does not move her body enough to get things going. When we first started with the GI department, they had her eating an exlax every evening in addition to the daily capful of miralax, but since becoming regular over these past few years, we have been able to eliminate the exlax and just do the miralax every other night. She now gets just a 1/2 cap every other night. Much as I hate having to put medications into her, this is all that has worked for her for that issue. Sending prayers that Tyler improves soon....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Took another urine sample in today and it tested positive for another UTI. Tyler finished 14 days of Cipro yesterday for the last one. How can this be? Just doesn't make any sense. We know he is becoming so very drug resistant that it has become pretty scary. Have to wait until Friday to see what happens this time around. Hoping he at least sleeps tonight. Four to five hours of sleep a night is taking its toll.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    can they identify the exact bacteria so they can give him a drug that will go after it completely? I feel bad that you are not able to get proper rest....hope you are able to get a little break soon....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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