Wednesday, January 12, 2011

Fourth Time's a Charm. Exhaling.


Well, things are getting better. We thought we'd be much more excited, but the way in which things came about put a damper on Sadie's progress.

The past few weeks have been rough. After the new year, Sadie's seizures continued to get worse, to the point that she was having very little awake time when she wasn't having a seizure. After experiencing three clusters of seizures in an hour, I spoke with her doctor about changing up her medicines (again). We had been increasing Depakote to see if we could gain more seizure control, but obviously this strategy was not working. The doctor has decided to abandon Depakote, and add Clobazam (now Sadie's fourth seizure medication).

While many doctors use Clobazam for seizure control, it is not yet FDA approved in the US, which means we have to go through a Canadian pharmacy for the medicine and pay out of pocket. While this is not ideal, we are more than willing to do it if it means that it will help Sadie. Until the medicine comes in from Canada, we are using Clonazapam as a bridge. Sadie's first few days on her new medicine were trying. The good news is, she is having fewer seizures, the bad news is she was so drowsy from the medicine that it was hard for her to even take her bottle. Our hope is that once we start weaning her off these other medicines, she will become more alert and interactive.

Sadie's therapies continue to progress quite well (that is when she is awake for them). Her reach and grasp has improved quite a bit with help from her Occupational Therapist. Last week I picked Sadie up and she promptly reached out and grabbed my hoop earring. I had to lay her down on the floor to get her to let go! I guess sometimes teaching her to reach and grab has it's consequences.

Bowel movements have become much better as well. She receives a "laxative cocktail" once a day which consists of half a Senna, a teaspoon of Miralax, and a teaspoon of milk of magnesia. We will have a poo-nami (as we like to call it) every 5-6 days, but the past few times she's gone without the help of a suppository.

Thanks to Easter Seals, we've also placed orders for Sadie's first pieces of special adaptive equipment. She is soon to be the proud owner of a Kid Kart XPress Pediatric Stroller, a Rifton Bath Chair, and a XPanda Feeding Chair. While these names may not mean much to many of you, the equipment will be a huge help for Sadie so that she can be positioned properly while being transported, bathed, and fed.

We are taking a few deep breaths now that we have better seizure control. As we venture into 2011, we hope and pray that this new medicine will continue to work for Sadie - controlling her seizures while limiting the side effects.

7 comments:

  1. so glad the new medication is a positive light...and so excited about the kart, rifton and panda! you guys are always in my prayers.

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  2. Cate & John CloerJanuary 13, 2011 at 6:21 AM

    YAY!! We are so happy that this medication seems to be helping Sadie. I love hearing the updates about her; good or bad. Here's hoping that we'll hear many more good updates in 2011. :D

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  3. Such great news Cathy! I had to laugh at the hoop earring comment. Funny how we have to be careful what we wish for at times! But such exciting news that the therapies are producing such great results for her. I'll keep praying that her seizure medications continue to help her (and that she's able to stay awake with them!).
    Love,
    Jen

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  4. Hey Cathy - thanks for keeping us informed. I think of you all the time and pray for you often. Even Wyatt and Caroline says prayers for Sadie at night and we have your Christmas picutre up on the mantle. Lets talk on the phone soon. With love always - Carolyn

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  5. praying for sadie always and you and adin too, for your continued strength. looking forward to 3/19! Katie

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  6. Hey guys,

    We can't believe how big Sadie has gotten, she is adorable. We need to talk, Sloane has been on Clobazam for a number of months it was the first anti epileptic drug that we saw a noticeable difference in her seizures. I'm not sure what the legalities are but if we can help you in getting the Clobazam we will. We have a fantastic pharmacist here I have no problem talking to him. I think with Sloanes medications alone we are paying his rent. We will give you a call within the next few days. Steph has lost her voice (this is the quietest it has been in 7 years) so once it returns we will give you a shout. We are thinking about and praying for you guys. Hang in there we know exactly what you are going through.

    Neil, Steph and the girls

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  7. Hey,
    really enjoyed reading it. Thank you for sharing such an amazing and informative post.

    Apu

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