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Thread: CBD not working

  1. #1
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    Default CBD not working

    Well, Tyler has been on CWHO (Charlottes' Web Hemp Oil) for six weeks now and his seizures are getting worse with every increase. Very disheartening. We were so hoping that this would be our answer. Have no idea where to go from here. Really looking for that magic wand that would make everything better. He is getting over back to back UTI's which isn't helping matters any. So very tired of watching him be so miserable.
    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."

  2. #2
    Distinguished Community Member andromeda31's Avatar
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    ((((Tamie))))

    So sorry to hear that the CWHO has not helped at all. Did he stay on his meds or did he have to stop the regular seizure meds before starting the oil? Saying a prayer that things turn around for Tyler....

    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!!

  3. #3
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    So sorry to hear this. Praying for things to finally turn around for Tyler.
    Mary Grace

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie & Tyler)))))) ~

    Oh dear, you must be so disappointed. I'm so sorry. I've been praying daily for the CWHO to work for Tyler. Are there other strains to try?

    How is Tyler's retching and gagging? Has that slowed down or resolved?

    I think I recall you mentioning that a doc (the ID doc?) had suggested that something be done about Tyler's kidney stones to resolve the UTIs. Has anything happened in that regard?

    My heart just breaks for Tyler, and for you and your husband. You all must be utterly exhausted. Please take care of yourselves and know that our love and prayers are with you.

    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.

  5. #5

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    Tamie, I was looking to see if you were still here and how Tyler is. Somehow managed to guess my password on first try at logging in in years and YOURS Was the first post. Aha! That was easy.

    I'm very sorry to hear that cCBD hasn't done wonders, yet. :/. It's hard to hope for something to help when nothing seems promising, then be let down. :/. (((Tamie)))

    ~\o/~ Only by His Grace ~\o/~

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