Wednesday, September 21, 2016

Not So Wordless Wednesday



Yes, we have been MIA again, and for too long.



We have had a very bad time with Ciara, but some changes have been made.  It is way past due for us to get her out of her monster prison.





Over the past two weeks, poor Ciara has been through multiple full blown seizures and several petit mal ones in addition to exhibiting every conceivable common and very rare side effect from her meds.  It has been pure hell for her and for the family.  Her neurologist has decided that she cannot tolerate phenobarbital, and it isn't helping control the seizures anyway. So over the next couple of weeks, she is being weaned off the phenobarbital and the gabapentin, while at the same time beginning a new regimen of zonisamide.  She was on zonisamide (as an adjunct to her Keppra) for a few months earlier this year, and her doctors seem to think it may help her.  Mom is not of the same opinion as she did not see any benefit from it,  but we have no other good options at this time.  It seems we may be at the end of the line for anti-seizure meds.  They were going to try her with potassium bromide, but given her reaction to phenobarbital, the neurologist says potassium bromide will cause the same problems.  She also cannot have the valium she was getting after a seizure to calm her system down because she shows a "paradoxical" reaction to it.  Instead of calming her, it just gets her super hyped up.  For some reason, Ciara gets all the BAD reactions to medication and none of the benefits.

Mom says today she is starting to see some inklings of a little improvement in some of the odd behaviors and hopes for things to get better.  We hope you can understand our absence.

Woos - Ciara and Lightning



38 comments:

  1. Praying for the best for Ciara, for all of you ...

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  2. We are always here when you need us, and of course we understand, we are your family. stella rose and momma

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  3. 'Inklings of improvement'. Paws cross that the improvements keep growing. Such a worrying time. We'll keep our paws and fingers crossed.....

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  4. We are really sorry you are all having such a hard time and that the medications aren't working. This sounds like such a scary road you are all going down and we just awful about it. We hope and pray something works.

    Thinking and praying for all of you,
    24 Paws of Love

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  5. Sending lots of healing vibes to you sweetheart
    Lily & Edward

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  6. You are always in our thoughts and prayers.
    love
    Mr Bailey, Hazel, Mabel & Mom

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  7. Ohhhhhhhhhhhhhhhhhhhhh Ciara we are so happy to hear your sweet Mom is seeing improvements! Oh girl we are dancing...baby steps!!
    We are always here for you, Lightning and your mom!!

    Oh Woos that mess yesterday was with Yahoo too our AT&T email is powered by yahoo. We had a friend in Mississippi and Florida who also had problems
    Hugs madi your bfff

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  8. We send out our heartfelt prayers for some relief.
    We will be thinking of you all & mommy will light her candle for you tonight.
    xo Astro

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  9. It's always good to see. We're very worried about poor Ciara, and hope the next round of medications helps her. This is turning out to be a difficult fight, and there aren't many solutions left. You've gone the gamut of all the seizure meds we're aware of. Even Dad the pharmacist couldn't think of another one. He did say those paradoxical reactions are also common in children with those meds. We're thinking about you and sending good wishes and POTP.

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  10. Dearest Ciara sending you lots and lots of luffs and healing licky kisses
    A big virtual hug to you Mom, will be thinking of you
    Take care
    Loves and licky kisses
    Princess Leah xxx

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  11. We totally understand! We are so thankful your mom is seeing small improvements, Ciara - our prayer is that the GOOD things will keep coming and the BAD will go away!
    Husky hugs to all!!!
    Cammie!

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  12. Goodness, we sure send tons of hugs to the Mom. We sure feel for you going through this with Ciara. I can imagine how awful this must be. We sure send lots of purrs and prayers and hope that Ciara can conquer the 'monster'. You both will be in our prayers big time.

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  13. You are in our thoughts. We know there is no easy decision when dealing with this sort of thing. POTP.

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  14. Please know that we are thinking about you even though we can't post because of a lousy Internet situation. We all send our prayers, hugs, and tons of POTP to you, Ciara.

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  15. We totally understand!! Take your time and concentrate on getting Ciara well, we are here and sending so much POTP your way!

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  16. All four paws are crossed fur Ciara.
    Your Furrend,
    Louis Dog Armstrong

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  17. We are so sorry dear Ciara, we pray the Vet finds the magic combo to help you dear girl.

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  18. My heart is going out to you all during this time of trying to find what might work for your gal. I know it is so hard to see our beloved companions having such a difficult time. Sending love your way!
    Noreen and Hunter

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  19. Dear Ciara we are so sorry to hear that you aren't doing well. We will keep our paws crossed that you can somehow find relief from your monster.

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  20. Oh gurl! I am glads to see you, and your Moms shouldn't worry abouts not just posting happy stuffs, cause we ALL go through the tough times, we just likes to support you and send you lots of love and {{{hugs}}}!
    And, OMD, I am having the same problem with my sedation meds!!! they have been makin' me HYPER HYPER HYPER!!!! The vettie is gonna try me on a new med for tomorrows ear treatment (Ma picked up the Rx at her pharmacy last week). She is crossing her fingers and toes that this one will work, and not make me a 60lb Tasmanian-Terrier like all the others! (I thinks I scared some peeps in the waiting room the other week...hehehe) what is with that???
    I am sendin' tons and tons of POTP for you gurl, and keepin' my paws crossed that your Moms and the dogtors can find a good combo for you!!! (oh, and if you find something that calms you down, lets me know, we are on our last group of meds for that too! :/ )
    Kisses,
    Ruby ♥

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  21. We are sending so much love,,, and POTP for Ciara..
    We know Ciara hates all that is happening to her,, and so hard for all of you to watch, and feel helpless,
    We are hoping the medicine change will help,,, We are so hoping .
    And yes,, of course we understand,
    love
    tweedles

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  22. We understand that you need to take care of yourselves right now. It's a full time job. I hope that Ciara continues to move slowly in the right direction. We are sending lots of POTP, love and hugs to all of you.

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  23. Oh Ciara! I'm thinking of you and keeping my paws crossed. BTW, my mom loves your new look on the bloggie!

    -Otto

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  24. Bless you all. I hope you find something that works.

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  25. I'm so sorry that the meds showed such bad sideeffects... and I hope hope hope that the little first good signs will continue and you can keep that monster under control, that it can't come out... Hugs to you all and POTP for the beautiful girl...

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  26. How absolutely stressful for you and your family. You have been through so much already. We are keeping you all in our thoughts and prayers and sending you lots of lots of AireZen and POTP, Ciara!

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  27. We are just so sad that you have been having such a tough time of it. We send all our love and good vibes, and crossed everythings that there will be some improvement soon and the new med regimen will work much better.

    Woofs,
    Tommy

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  28. Oh, most pawsitive thoughts coming to you for Ciara. We hate to hear that she is having seizures.

    XOXO,
    Piper, Celti, Bonnie and Ivy

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  29. Sending POTP and sloppy kisses to Ciara. Hoping that something will help her, Big hugs xx

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  30. Oh man, you guys are really having a hard time getting ahead of the s monster. We're rooting for you and the new meds. Valium works great on some of my dogs, but it revs Sydney up. When she had her seizure the et said to give her 5mg. She started racing around and wouldn't calm down. The next time he said to give her7.5 mgs. I worried, but gave it to her and she went to sleep.

    Good luck, you're in our thoughts.

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  31. Yes, we totally understand! We hope this monster gets under control!!

    Your Pals,

    Murphy & Stanley

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  32. Ciara's monster really is MEAN....obviously he's NOT WELCOME at your house so why doesn't he just GO AWAY?! We hope the change in meds will work.....Ciara is so brave....and I know she appreciates having her brother's support AND your support as well but it must be TIRING and DISCOURAGING for her too.......sending her a HEALING HUG and lots of POTP.........really!

    Love, Sammy

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  33. I'm so sorry to hear all Ciara and you have been going through with her seizure monster. I hope the changes in medication will provide some relief. You are always in our thoughts!!!''Joan and Just Harry

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  34. We are praying hard for the medication to work. You and Ciara need a break and some gooned news

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  35. Dear Ciara, you're always in our thoughts and prayers! Hugs to you guys!

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  36. My sweet Sibe gal pal Ciara. I'm ashamed of myself for having not been around to keep up on your healt. Purring for you to be better

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  37. This post breaks my heart for poor Ciara. I hope the new meds will help.

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