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Thread: Tyler has another UTI

  1. #1
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    Default Tyler has another UTI

    This has been a constant pattern since September. Within one week of stopping the antibiotics for one UTI, another one pops up. This is nuts. Husband is heading to the pharmacy to pick up Ampicillin. He just got off the Nitrofurantoin and Levaquin on the 7th. He is again seizing, gagging, retching, and in a cold sweat. I can't believe this is happening again. We are starting the Keto Diet tomorrow and hoping for no problems if he gets really sick this time around.
    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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    Oh Tamie, I am so terribly sorry that Tyler is having such an awful time. I wish I had some ideas about the UTIs - I know my Mom had the same thing once and the doctor told her she would have be on antibiotics for the rest of her life. A couple of months later, the infections just went away. It was mysterious. No one ever found what caused the infections and no one knew what got rid of them. I'm praying for your family and sweet Tyler now. Good luck! Donna xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie)))))) ~

    I'm so so so sorry to hear this! You are right, Tamie. This IS nuts!

    When Michael had MRSA in the hospital 11 years ago, our ID doc talked to me about "community immunity" to the benefits of antibiotics. Most commonly prescribed/overused broad spectrum antibiotics: Ampicillin, Amoxicillin, Cipro, Keflex, Levaquin, Septra. All the ones being given to Tyler. (And my boys, and everyone else in the country ...)

    In the hospital, our ID doc generally prescribes newer, stronger, more bacteria-specific antibiotics. Perhaps that's what Tyler needs at this point? With a nursing service, you might be able to do IV antibiotics at home. We did it for Jon in 2012, and it wasn't difficult at all. Nurse came 3 out of 5 days to check on us. PM me if you need the name and number of our nursing agency. They are #1 in the County. I highly recommend them.

    We were all over the moon with Tyler's good news of being infection-free. Prayers for answers to resolve all of Tyler's issues for all of you, so you can get some rest.

    Praying too that Tyler can tolerate the Keto diet. Please keep us updated.

    Sending tons of love and healing energy ~

    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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    Day 1 of Keto. Not too impressed. Tyler gagged, retched and seized all day long. The cold sweats are back with a vengeance. So hard to know if this is from the new infection or the Ketocal. Tyler is back to withholding urine too. Cathed him two mornings running and got 550-650 cc's off him. Makes me want to run to the bathroom, but doesn't seem to faze him. Would love to know what we are dealing with, cause these constant infections are taking a toll on all of us. Thanks for your thoughts and prayers. Don't feel so alone.
    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)))))) ~

    You are definitely not alone! I am so there with you, honey! (Wish I actually could be there to help you or give you some respite/rest!)

    Is Tyler's gagging, retching and seizing worse than usual? I guess that would be the only way to determine if Tyler isn't tolerating the Ketocal. It's so frustrating to figure out the culprit, since there are so many possibilities ... the infection, the antibiotics, the interaction of seizure meds with antibiotics, the Ketocal, Tyler's digestive issues, seizures ... any and all of these could be causing Tyler's gagging and retching and seizure increase.

    Withholding urine is so scary. We just waited 16 hours for Jon to produce, when an irrigation did nothing to spur it on. But Jon's fluid intake was low. We had to hold his feeding, because his belly blew up last night, and at 4 a.m., he was vomiting. So, he didn't have a lot of fluid to produce through his cath, and we gave him M.O.M. to get his bowels moving, so that's competing for the fluid. And like you, we have no idea why this happens to him.

    I can only imagine how difficult this has been for you, your husband and Tyler. There must be an answer for Tyler and relief from these continuing infections. I pray for that answer, and for strength for all of you.

    Praying you and your husband can get rest. I know you must be completely exhausted. Grab it when you can.

    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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    Oh no I'm so sorry to hear all that is still going on. Many prayers that he will turn a corner soon. You must be exhausted I hope your able to take care of yourself.
    Mary Grace

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

    How is Tyler? Praying for pee and riddance of infection, seizures, gagging and retching. Prayers for you all to get some rest too.

    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, thinking of you and Tyler... and praying. I hope that the truth reveals itself. Sending healing and gentle hugs, Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((Tamie))))

    Sending prayers.....and hoping you get a chance for a little break for yourself....stress can wear one out!

    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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