Tuesday, December 20, 2011

To wean or not to wean, that is the question?


Zoey's neurologist and I, do this little dance every 6 months. He sits there, hand on chin, leaning back in his chair looking very contemplative, and I sit there, trying to read his face before he speaks, my stomach in a knot trying not to puke, awaiting word on whether the time has arrived to start weaning Zoey off her seizure medication.

The seizure days.

Yesterday, our visit went much as it usually does, except, for the end result. Up until yesterday, we always decided to put off weaning. Found a reason, anything, mostly at my coaxing, to put off the inevitable. But yesterday, he said, it's time.  My amazing pediatrician, who I always pull the "What if it were your child?", unfair card, also agreed. To which I said, okay, let's do it. But it really wasn't that simple. Hardly. It was actually very difficult and even today, I am not sure I am making the right choice. I can change my mind. We haven't begun yet. I can keep things status quo. My choice. He won't force me to do anything I am not confident in doing. But the thing is, I do trust him. Dr. Shields, is highly respected in the field of neurology. Especially where Infantile Spasms are concerned. That is why we went to UCLA, almost 4 years ago. At a time when we were not able to gain control of her spasms with 2  frontline drugs and then, when her seizures morphed into tonic and complex/partial seizures. So a part of me says, take the leap, trust in the data, and trust my girl.

The, I lost my little love, days.

But that pit in my stomach is still there. The thought of returning to seizure days, almost unimaginable. We have a 50-50 chance of that happening. And as I said to him, if I were a betting woman, I wouldn't take those odds. But for some inexplicable reason, I do believe, come the first of the year, literally, January 1st, the weaning process will begin. Very, very slowly. He said decrease her dosage by a 1/4, every 3 weeks. So we are looking at a 3-4 month process until she will be completely off. Terrifying really. The going back to watching and waiting and saying, to each other, "Was that anything?", to every out of the ordinary movement. Zoey actually has many neurological movements that are out of the ordinary, all day long because of her brain injury, so the watching will be a tad bit stressful. And those of you with children who have or have had seizures,  you know exactly what I am talking about. I have been going back and reading my archives from those days and I tell you, reading those posts, bring things back in an instant and reminds me of why this process scares me. This one post especially.

The rip my heart from my chest, days.

So why wean? Well, her medication is a known cognitive dulling drug."Dopamax", is it's nickname about town. It is a known appetite suppressant.  People actually seek this drug out for weight loss purposes. My child weighs a whopping 22 pounds. She is nearly 5. Would be nice to see if we can get her a bit more interested in food. Topamax is a drug that has been known to inhibit speech development. Some children have been taken off of it and lo and behold, there comes speech. The speech argument, will be interesting to see play out because although Zoey's stroke was on the side of her brain not responsible for speech, the timing of her stroke, in-utero, meant that at the early stages of life, speech is still bilateral and therefore, is her lack of speech a result of her brain injury or is it the topamax hindering it? Should be interesting. And scary. And nerve racking.




However, it also could be absolutely magical as well. Zoey might just emerge and develop in ways we could never have imagined. She just may come out of a fog that we didn't  know she was even existing in. She just might, once again, surprise us all, and flaunt that feisty spirit of hers, all the more. These series of pictures were taken last month. We were at our local Down syndrome Buddy Walk, which Zoey was thoroughly not impressed with, until ... we removed her from the commotion and over stimulation and we placed her on the ground. She scooted herself over to this hula hoop and I was blown away that she did not hesitate for one second to pick it up, the very best she could and attempt to use it in her own unigue and I must say, accurate way. And, I need to add, there were no children around for her to model either. She did it on her own. I had absolutely no idea that SHE has any idea how a hula hoop was used. That should tell me something, shouldn't it?

 Wish my girl luck. Send her prayers and wonderful happy, seizure free thoughts, okay? I am thinking she deserves it.



Kristin said...

If she were to have another seizure, you could put her right back on It, right? Prayers and calming thoughts coming your way!

Cathy said...

Hi Heather
We have just been through the same turmoil with Bella. We strted weaning late 2010 and Bella seemed fine. We did a follow up EEG this year which showed Epileptic activity (previously her EEG was 'normal')although she had not had a seizure so unfortunately we have had to increase her meds again. Luckily she never had a breakthrough seizure. Maybe see if you can get a quick follow up EEG hlaf way through the wean so you can see how she is going and pre-empt anything if necessary.. Good luck. Thinking of you and precious Zoey.

stephanie said...

Oh boy!! Every time you post about this I'm relieved at the end when they/you have decided to wait. So now it's time. Let's do it!!! Getting the novena's ready... is there a patron Saint of seizures? I've got a couple of dependable buddies in Heaven that I call on, on a regular basis.

It could be unbelievable!!

I've got the same question as Kristin. can you put her back on the meds if you see the seizures return??

Cammie Heflin said...

Absolutely sending tons of prayers for Zoey and especially you so are peaceful and calm during this process :) Zoey will definitely shine like the little light she is!

Becca said...

I have the same question as Kristin - couldn't she go back on the meds if the seizures start again? Oh, I soooo don't envy you this decision, but it sounds like it could be an amazing thing if it works! I wish you all luck and comfort during the uncertainties, and will be anxious to hear updates. Ohhhh, btw, those photos are mellllllllting my heart this morning... BIG smooches to Miss Zoey from us!!

colleen said...

Sending SEIZURE FREE THOUGHTS directly your way....so hoping she can get off the Topamax and glad you have a caring, intelligent medical team to support you thru the process. Use them as the New Year approaches. Hoping for developmental excitement in 2012!

Karol said...

"if she were my child" I would be scared, but I would take the plunge. As you know Moise has been having some serious strength issues. The doctors all wanted to know, "do we still need the seizure meds?" So we did it, slow but steady. One half pill a day. They are done now, have been for several weeks. No seizures but much, much more energy, more appetite, more strength, better learning. As Kristin said, at the first sign of a seizure, back to the meds we go. It's scary as heck but what do YOU believe in your heart of hearts? Your a brave, strong woman Heather. You can make the right choise here.

And by the way....these pictures of her.......they make me ache? She is just too beautiful and my arms, they have been empty for so long.

Love and prayers to you my dear friend.

blogzilly said...

It's a reasonable question, but the problem with that though, Kristin, is that Epilepsy is such a tricky Beast that the same medication might not stop seizures a second time if they start back up again, isn't that CRAZY?

Heather, I think this is the reason why making decisions in Our World involving the tenuous nature Our Kids have on...what they have, is so difficult.

You have several doors to choose from. Some sort of psychotic Wayne Brady game show. The only thing is, while they all contain some solution, NONE contain an answer that is 100% danger or problem-free.

If it did, if there was ONE freakin' door that had that behind it, we might, just might, feel differently about these kinds of decisions.


The VW's said...

Praying this change works out wonderfully for your sweet girl! Hugs!!!

MoonDog said...

she sure is beautiful! thinking of you and hoping for good days and big improvements!

Reagan Leigh said...

Unfortunately it's not that easy. We seizure moms know that when you take a medication away that was controlling the seizures (and they come back), starting the same med again usually will not do the trick! No clue why...that's just how it seems to work. Ugh, I know your frustration. I know your hesitation. But Dr Shields is one of the best in the business and I too would be inclined to follow his lead. Definitely pray about this over the next week or so and see what God is leading you to do. You will certainly be in my prayers!!! (so will that precious little one of yours that just couldn't be any cuter in those pics!!)

Anonymous said...

Boy oh boy those photos of times past (seizures) how far Zoey Grace
has come. And the hoola hoop to me was a shout out to "let's move to the next step of my journey mom & dad"

For sure prayers are with her & you.

Love, love - did I say love enough times? these recent photos. That smile is over-the-top amazing!

Wish there were not so many miles between our families.

My question is the same as Kristin's, can she return to meds if God forbid she had another seizure?

Aunt Bluebelle

The Annessa Family said...

Oh my goodness - such a huge decision but know you are covered in prayer as you move forward.


Kristen's mom said...

she does deserve it indeed. Thank you again for the bears. Everyone was dressed to the max, they even had sound. I am sure they were a favorite as we delivered them yesterday.

Jamie said...

bringing me to tears..well I say if shes been seizure free long enough its worth it! I pray one day I will get Madie off her Depakote..she too has feeding difficulties.:( tough. Our sweet girls want to emerge and be strong and these darn drugs are so..yuck. Topamax was a crummy one for Madie..I very much remember getting her off clonopin too and she figured how to sit! :)lots of luck and hugs.

Anna said...

its all grace isnt it. We cannot be perfect and you know what they say about hindsight being 20/20. You dont have that yet. But, you have an incredible team that can help you navigate this ugly thing called IS- seizures. I agree that maybe you could request an eeg halfway through the wean? Trust yourself......
many prayers flying your way. (she is delightful! What a beauty you have on your hands, takes after her mama!)

Lacey said...

That was my question as well. Have you had an EEG lately? Maybe get one to have as baseline. And did he say that if the seizures started up again, that they would be harder to stop, or would they stop again with restarting the drug. Such a hard decision, seizures suck! We know that for sure. You want to see her be able to do more, but 50/50, I'm not sure I would take those odds either!

Rochelle said...

Praying hard for Zoey to soar and not have a single seizure!
Praying for peace for your mama's heart that wants the best for your girl.
We have a little girl at church that had infantile spasms and has been off meds and seizure free for almost 2 years and wow what amazing progress she has made.

Catherine said...

I am so hoping it works. I don't think I would have the nerve having watched my friend go through a long period of time with a daughter with uncontrollable seizures. But without taking a risk, one cannot have the possibility of moving forward.

Sweet Pea's Mommy said...

Those are precious photos from the Buddy Walk! She is constantly amazing us all.

Prayers are certainly coming your way! HUGS!!!!

Carolyn said...

Daniel has been on Topamax for about ten years now. It's kept him pretty much seizure free.

I too wonder if I'd see a leap in development if we were able to wean him, but my ped and neuro both advise against it. His EEG is abnormal, though.

I don't know what to suggest at times like these except to pray about it and hope that the right choice becomes very clear.

I had a hard decision to make awhile back involving growth hormone, and when I was doing the most soul-searching I just "happened" to bump into a developmental pediatrician (and I didn't even know we had one in my city) who had some strong opinions to share that backed up the direction I was leaning in.

The thing is, I still question whether I did the right thing or not! When I do, I remind myself that I'm just making the best decisions available to me with the information and advice I have on hand.

Thinking of you.

Life and Times . . . said...


I've read and lurked for a long time, but rarely (maybe once?) commented. I cannot imagine how absolutely gut-wrenching this decision is for you. I just want you to know that I'll be praying. Zoey is a sweet and precious little girl.

Meg said...

Sending positive thoughts that this works for Zoey. Be at peace with your decision. There is no definite answer and you can only go on the best data and advice. Really hope it works and she can stay off the meds.

May said...

Hi Heather,

We are with you in prayer for wonderful results. Take care.

Salinas family said...

Hi Heather,
Love the new pictures of Zoey!!! Just can't get enough of that sweet face!Lots of good comments, information, and advice already posted. Lots to consider. Just had one thought to add to the list - how about waiting to actually make the decision until Jan. 2nd, and not worrying about whether it's the right choice until then. Maybe that would allow for a much less stressful and much more enjoyable Christmas and New Years. Just a thought.
Sending much love from Logan Ut. As always, you and Zoey will be in my prayers.

Bea Braun said...

We have been praying for Zoey every day for over 5 years, and now we will pray even harder. What a hard decision Heather, but Zoey has surprised you every step of the way. Trust in your doctors, trust in your amazing daughter, and trust in your God!

Kaden Epstein said...

Thinking of strong sweet Zoey...What ever decisions you make are made with love and hope for your sweet girl! Love the hoolahoop pics...! She SO knows what she wants to do!

Melissa said...

I love the new Zoey pictures. She brings a huge smile to my face every time I see her.

While I can't even begin to imagine how hard a decision this is, it seems like you are more ok with weaning than you were six months ago.

You and Zoey, as always, are in my prayers.

Shelly Turpin said...

oh Heather. My heart aches for even the possibility. I will pray that she can be free from the drug and free from the seizures. So hoping for a bright year for this sweet girl

Joyce said...

I'm here for support only as I have absolutely no experience with seizures. Looking at that precious girl of yours sure gives hope though. The hula hoop story is testimony enough that she deserves everyones attention.

Do you follow Cayman's blog? If not here is a post by her mom that might be worth reading.


Scrappy quilter said...

She is such a sweetie. I remember the day I found your blog and fell in love with her. I've watched has she's progressed into the little beauty she is today. Go with your instincts. Can't wait to see what Zoey does in 2012. A very Merry Christmas to you and your precious family. Hugs and love

just jean said...

It's definitely a leap of faith, but you've stood on that ledge before.
And Zoey is surrounded by her own army of prayer warriors who continue to hold her (and you) up.You'll never know unless you try.
Can't wait to see all of you!

Anonymous said...

Wishing you and your family a Happy, Healthy New Year. I know you have had tough decisions to make but watching Zoey, through your blog, indicates you are are on the right path. Loved the Hula Hoop venture, whatta a gal. You are in my prayers and I'm sure God is giving you and Mark the strength to weather this journey. Bluebelle keeps me up on your postings. May 2012 be a wonderful year for you and your family. Little Zoey, you keep up the great work. You certainly are a strong warrior.

Cheri said...

Zoey was blessed with the most incredible, strong, loving, and brave mom. It's the truth.... though I am sure at times you do not feel strong or brave... but we all see it out here. Though I am sure everything in you is wanting to "Keep it safe" with the Topamax I can also sense that you are sensing that Zoey's ready to try and see...

I love Zoey, have always loved Zoey since the first day I saw her adorable little face on your blog. On bended knee I am praying that she shows the world that this too she will concur, and I am praying for developmental leaps that again "Make the doctors wonder"


Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

~We love you Miss Z!


The Baby was just weaned off of Phenobarbital after a very loooooong weaning process. The first thing I noticed half way through is (and she is 4 years old) that she began to TALK. She was officially weaned off two weeks ago and has been seizure free. She will probably have seizures in the future due to her extensive neurological damage but there are more appropriate drugs for her if that day occurs. The Teenager has been weaning off of her Zonegran and will be off completely on the 31st. It's similar to Topamax but not as appetite reducing. The neurologist told me half the nurses at the hospital are on Topamax for "headache" i.e., weight loss...

Anonymous said...

To Cheri: What beautiful words "Wonder" Thank you for sharing with everyone in Zoey's Blog family

Loraine (Bluebelle)

Mommy to those Special Ks said...

Definitely praying for Miss Zoey. We are just starting down this road with Kellsey and it's freaking me out. EEGs are a whole new world for me! Ugh! Praying that you see the huge speech explosion in Zoey that you've been waiting for!!

Angi said...

Love your girl, it will be okay, she deserves the world and then some....

Anonymous said...

Gorgeous girl! Thought about you all and wanted you to know. xo
tuesday's mom