This ‘n’ that

29 Sep

I’ve spent many hours at the computer this weekend, but almost none of them on my blog, so here’s a little update on life at the mo’.

Jade’s still having around 20 seizures a day, but her mood has been improving.  For the past week or two, she’d been behaving manically, swinging from happy to tantrum and back at the drop of a hat.  Very frustrating to live with.  We think it might be the Clonazepam and the neurologist suggested cutting it back again.  We’re also upping the valproic acid again.  The latest blood tests showed the drug has finally reached the “therapeutic range”, although it’s still at the low end.  We’re keeping our fingers crossed for improvements in the next little while.

We found out at the end of last week that our referral with the epilepsy specialist, Dr. Hah, will happen soon!  The appointment is set for next Friday and will be with both her and Dr. Demos.  They wanted both Michael and me to be there, since we’ll be discussing a number of things, including a kind of orientation to the ketogenic diet.  Since it takes a big commitment from the family for the diet to work, it’s important that we all be involved.  I was worried that Yukon Health wouldn’t allow both parents to go (normally a child is allowed just one “companion”) but apparently they will cover travel for both parents if it’s “medically necessary”.  The paperwork’s been submitted, so I just hope the evaluating doctor doesn’t think it’s not necessary for both of us to be there.  I’m sure one of the reasons the referral happened relatively quickly is because of Nugget.  By the end of October, I’ll no longer be allowed to fly. I’m so grateful to the BC Children’s Hospital for doing everything they can for us.

In the meantime, my own energy and mood still tends to rise and fall with Jade’s condition.  Leaving work a little earlier than the end of October is looking more and more appealing.  However, I have a couple of commitments that I really need to meet.  I have a report due for my biggest project at the end of this month.  Which would be, uh, tomorrow.  Which was why I spent almost 18 hours at the office this weekend.  However, since I spent the entire time in yoga pants (!) and there were no people distractions I was seriously productive.  (Between that and your encouragement, I believe there will be another pair of office-worthy yoga pants in my near future.  I mean, these ones have to be washed sometime.)  Michael was awesome being pretty much on his own with Jade all weekend.  I missed being with them, but I’m so looking forward to getting this report D-O-N-E.  It’s been a huge source of stress for me.

Michael’s folks were supposed to be visiting this week but they had to cancel because Michael’s Pop was in the ICU in Mississauga, unable to breathe on his own.  His mom has been there for the past week, being with Granny (who has lung cancer and just recently got moved to a care facility) and Pop.  We were so worried about Pop and of course disappointed to be missing a visit, but things started looking up today, with Pop finally coming off the ventilator for the first time in almost two weeks.  He had also been on a feeding tube the whole time and today got to eat “real food” — applesauce — for the first time since going into the ICU.  Apparently he wolfed it down with relish and when Marian observed, “But you don’t like applesauce,” he grinned and said, “I do today!”  So like him.

After the marathon weekend at the office, plus going in today (my usual day off), I’m definitely starting to lose steam.  But things seem to be looking up, so all I need is a good night’s sleep (am I perhaps asking for too much here?) and I’m sure I’ll be good as new.  Speaking of which…

Oh, wait!  Did I fail to mention that we had our first snowfall of the year this morning?

9 Responses to “This ‘n’ that”

  1. Dr Barry L. Marks, DC September 30, 2008 at 12:00 am #

    Hi Fawn,

    My son began having seizures at age 3. They were generalized, tonic-clonic and would last upwards of 15 minutes. He would have tons of small staring spells and would tell us he smelled odd odors. All signs that he had been having absence seizures. His triggers were lack of sleep and TV.

    We consulted a few neurologists and an epileptologist. He was prescribed Carbitrol, which at the time was not suggested for children. We gave him the smallest dose possible and that caused him to have terrible urinary problems. He would feel urgency all the time but couldn’t go. He would get really hyper within minutes of taking the drug. Because of this, we kept his dosage low. His doctors said the drug wasn’t doing anything because it was too low. We kept him on it anyway.

    We then began feeding his brain with lots of fats. Not a ketogenic diet, but way more fat than ordinary. He ate lots of bacon, peanut butter, flaxseed oil, etc.

    By age 5 he no longer had seizures. We removed him from meds.

    He is now age 14 and very healthy. We are still vigilant and do not let him stay up too late or watch too much TV or computer games. He still eats more fat than most would say is healthy, so he is a little chubby, but growing by leaps and bounds.

    I’m telling you this because I believe the inceased fat in his diet cured him of his seizures. I would recommend you try the ketogenic diet or something similar. I woudl also recommend you find a local chiropractor and have him or her work on your child to remove any nerve inteference.

    I hope Jade becomes seizure free and you can rest.

    God bless your family.

    Warmest regards,

    Dr Barry Marks

    Thanks for your thoughts, Barry. We’re definitely considering our options.

  2. Suzanne September 30, 2008 at 4:12 am #

    Hey Fawn,

    You mentioned that you think the medication might be causing the mood swings, but it might just be her age. In my personal experience, 2 year olds are extremely volatile. Em can go from laughing to screaming and back in under a minute. And there’s no reason, other than she’s 2. She’s been referred to as “bi-polar girl” more than once. My son did it too.

    good luck — Suzanne

    You’re absolutely right about toddler mood swings! It’s not that she was all perfectly even-keeled before — ha! The extra Clonazepam just seemed to make her moods a lot more extreme than they were, and her sleep was restless and long in coming. Some kids do react to the drug that way, despite it being a sedative, just like some kids get wired on Gravol. It’s unsettling to see your child’s personality change all of a sudden.

  3. Tori Buggeln September 30, 2008 at 5:46 am #

    Hi Fawn!

    Just checking in to catch up on all your news. You are looking great. I’m glad to hear that it is likely you will both be involved in Jade’s big appointment. That means you’ll get to see Nemmy & Mike too! Take care.


    Yee-haw! It’ll be a very quick trip, as the plan is to be down the day before and back the day after the appointment. But we should be able to have a supper get-together, at least.

    I haven’t seen my sis since her wedding, which — hard to believe — was almost a year ago now. Gee, those sunny Mexican days feel like just yesterday. *dreamy sigh*

    Anyway, I’m keeping my fingers crossed that Yukon Health will understand why I need to be there. I’m a bit worried about whether I’d be able to go to the induction if Jade does start the diet. I certainly doesn’t look like it could happen before my “no flying” restrictions will start, so that would mean either going down with an infant, or not being there at all… but I won’t think about that yet!

    Think happy thoughts… like Mexico!

  4. Kara September 30, 2008 at 7:27 am #

    Fawn, you are such a strong woman!!

    So if you start this diet, how long would she have to stay on it? And would the medications be stopped once she started the diet?

    Thanks Kara. We all do what we have to do, right? From what I understand, most kids need to be seizure-free for about 2 years before they are weaned off the diet. This is actually the same with medications. Once 2 years have gone by with no seizures, whatever the therapy, that’s when they think it’s safe that they might be gone for good. Of course, some families stop doing the diet much sooner (like after a few months) if it doesn’t seem to be effective or if they find it too difficult to adhere to.

    As for weaning her off the medications, she would likely stay on them at the beginning and then if the diet is effective, we’d consider lowering the drug levels. It’s all a bit of a dance, since each kid reacts differently to the diet and the drugs.

  5. shannon maccuaig September 30, 2008 at 6:13 pm #

    It never ceases to amaze me how life is just up and down and up and down all the time and we just have to roll with it or perish. You are such a good role-model for making it through the hard times and focusing on the good; its one of many many things I love about you. Sending you and all of your family positive vibes, Fawn. Take care…

  6. MommyTime September 30, 2008 at 6:16 pm #

    Oh, sweetie, good luck with finishing everything so that you can spend the time you want with Jade. I hope that you both get to go with her to the specialist appointment and that things improve with the change in diet. Sending hugs…

  7. Lara September 30, 2008 at 9:00 pm #

    Thinking of you and sending big big hugs your way. You are so strong! YOU CAN DO IT! That report doesnt stand a chance, you are going to nail it.

    Glad to hear you will likely go to Van… oh Fawn, my heart goes out to you as a fellow pregnant-extra-stress-burdened-very-busy-at-work Goddess. I just finally met a deadline (well 2 days late but it was ok) that was a big one for me… having the extra ups and downs and challenges on top of an already busy exhausting and stressful pregnancy is something no one should have to handle. But you are, just beautifully.

    I’ll try to call this week before Van – if you have a chance feel free to ring me too!

  8. Jenny October 1, 2008 at 3:25 am #

    All kids have mood swings, but I’ll tell you, we’ve been weaning off Topamax for almost 2 weeks and Naomi’s a totally different kid. If Jade’s having mood swings at least she’s feeling emotion. At higher doses, sometimes they just seem so “foggy” and you almost pray for an emotional outburst. About the Ketogenic Diet, the book I read said they’re on the diet for 2-3 years, but… they’re on the strict 4:1 ( fats : (protein +carb)) ratio for a year then you almost start to wean off the diet. You go to a 3:1 ratio which is easier for 6 months and if all goes well down to a 2:1 ratio for the last 6 months then you’re done. We’re set to start Oct 26! You should get the book I bought it used on for less than $10 maybe less than $5 I can’t remember

  9. maleesha October 1, 2008 at 11:09 am #

    The first snow!

    you have officially been tagged with a new meme…as of 5:10 Mountain time tonight…

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