Overdue

Lately I have just been too busy living my life to post. I think that is a good thing, as it means I have not been spending as much time on the Internet as a diversion. Life is moving along I guess.

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Maddie is still having lots of seizures, though they are greatly decreased from 45 days ago. Right now she has around 100 seizures per day, which includes typical infantile spasms in clusters, single spasms and head drops which cluster as well. I did not actually count the head drops in clusters before because there were so many and I had tons of “bigger” seizures to count. But if I had been keeping track of them, I would say that 2 months ago she was having 500-1000 spasms of some type daily. That is just absolutely outrageous. Luckily, we have gotten some level of control now, but it has not come without a price. For Maddie, the side effects of Zonegran that are not fading much yet are loss of appetite and cognitive issues. She has trouble recalling and pronouncing words. She walks with much less balance. That is improving, but we are getting her a helmet because walking is truly dangerous for her right now between the seizures and her lack of balance.

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In an attempt to try to reduce some of these side effects, while maintaining some level of seizure control, we decided to reduce her dose of Keppra, an anti-epileptic she has been on for 6+ months that frankly we did not think was doing much of anything. 5 days after the dose change when the number of spasms (in clusters) per day had quadrupled, we decided Keppra might actually be doing something after all. So we went back up to her old dose. And things have gotten almost back to where they were.

Going forward from here, the plan is still to do the Ketogenic Diet starting Oct 26 in Charlotte. By then, we have to have her meds at a stable level, so we really can’t change much between now and then if we want to give her the best shot at the diet working. If the diet works for her, down the road, we would consider weaning both the Keppra and the Zonegran. But for now, it seems they are both helping and we don’t want to lose the only seizure control we’ve ever had except from dangerously high doses of steroids.

The tricky part is that for the diet to work, Maddie will have to eat every single bite and drop of the foods we make her. And her appetite is tiny right now. And because of the loss of appetite, I haven’t weaned her from breastmilk yet. Because that has been the only way I can ensure she takes in enough fluids most days. But it has to be done, as much as I don’t want to do it.

Sometimes I think I’m insane that I am nursing my almost three year old. But she loves it, and honestly I do too, and there really isn’t anything that makes her happier in the world. It totally bums me out to have to take it away from her. But the diet will not work unless I do. And if it works, it will be worth it.

I truly feel the ketogenic diet offers the highest chance of seizure freedom for her now. Though the meds she is on now are helping, going much higher would leave her so out of it, I am not sure it
would allow her to make any developmental progress even if she were to get seizure free.

So in the next two weeks we may make one more med increase just to see if we see any great improvement and I have to wean her from nursing. We also have lots of therapy, and we are trying to get Maddie a bed that is safe for her through insurance. I have heard this can be quite a fight. So things are busy here.

And we also have to say goodbye to Brandon. I will write more about this later, but right now we are just enjoying our time together as much as possible.

Last month was Childhood Cancer Awareness month and I am ashamed that I let it go by without even mentioning it. Those of you that have followed our story for awhile know that this time last year we were gearing up for the MileStones walk for CureSearch. Hands down, I still feel it is the most important charity to support, but this year, I gave myself a pass. We just have too much going on right now for me to organize a team for an event we probably can’t attend. But I am optimistic that next year things will have settled down for us a bit and I’ll be asking for your money again for this fabulous cause. Honestly, if there were better treatments for children’s cancers, Maddie would likely not be suffering from hundreds of seizures a day. But that chemo hopefully saved her life, so I am still grateful.

On that note, October is a tough month for us because it was the month of Maddie’s diagnosis. But that means we are actually approaching the two year anniversary of her leukemia diagnosis. I’m not ready to celebrate yet, but every month she is still in remission is a step in the right direction.

And I hate to just throw this in at the end of our update, but I want to mention it now so that if you can pray for him, you would do so now. A mom of another child with IS, Danielle, has been one of my strongest supports in this battle with seizures. Her beautiful son Trevor is having grids placed on his brain today to monitor his seizure activity. This is like an internal EEG, which is much more accurate. He will be monitored this way until Friday, when he will have a subtotal hemispherectomy. Dr. Chugani’s team in Detroit is doing the surgery, so he is in great hands. Please pray for a successful surgery with no complications, but most importantly that this rids him of seizures forever.

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I don’t think I can properly express how much I hate seizures and all that they take from our children.

Love to everyone,

Liz, Brandon, and Maddie

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15 thoughts on “Overdue

  1. Good to see an update from you again. But, I agree, sometimes it’s good for us to take a step back and just live life without distractions. When my internet went down last month, I thought I would go out of my mind at first. Then I started to enjoy all the spare time I had when Austin was napping. I still haven’t gotten back in full swing with posting yet.

    It sounds like you have a good plan in place, although I know it must be difficult to consider weaning Madie right now from nursing. It’s hard to let go of any type of constant that provides comfort for both of you.

    I’m hoping and praying that Madie’s seizures continue to improve. I know we all want no seizures, but even reductions are welcomed, right? Maybe the keto diet will provide the final nudge in the seizure freedom direction.

    (((hugs)))

  2. I’m grateful for the update, very thorough. I’m glad you have been spending as much time as possible with Brandon before he deploys but it sucks that you guys still are in the 100’s…that just isn’t fair.

    Love the pics you included here too, nice to see how Maddie looks these days. She does look happy, and that’s a good thing.

    Childhood Cancer sucks. Why I haven’t yet accepted our position in that universe I do not understand. I am betting that I will have an entirely different perspective, and fear, after the 13th, when we meet with an Oncologist for the first time.

  3. Gorman Family,

    1. I was a classmate (conference group member) of Brandons’ in Quantico from 2008-2009.

    2. My wife, Erin, and I regularly talk about the admiration we have for your family…often with a lump in our throats’ and tears’ in our eyes.

    3. Maddies’ story is truely one of perseverance and strength.

    God Bless the Gorman Family.

    CAPTAIN CHRISTOPHER R. GARNETT
    U.S. Army

  4. Loved the pictures of your sweet princess…. Enjoy your time together as a family!

    Keep your head up Liz, you are a great mom and I admire the way you press on in the midst of all the “junk”.

    Praying for the new diet to work (I understand it is quite an undertaking) and things to improve quickly. Hugs to you all.

    jana

  5. Dear Friends,
    Though we’ve never met I consider you as such as I have walked in prayer with you for these 2 years (can it really be that long?) Bea keeps me up to date every now and then also. I continually place Maddie before the feet of Jesus … that’s all I can think to do. He loves her as no one else can. Hard to hold on to that thought in the midst of all you are walking through so I’ll hold it for you! I pray for wisdom for all of you as to meds, diets, etc. Maddie is absolutely precious and has such a twinkle in her eyes and smile. What a sweet child. I’ll be praying for Brandon (I have my USMC sticker on my car as a reminder) and will pray Psalm 91 for him. There is a version for a member of the military and I’ll send it to Bea so she can get it to you (too long for this).
    You have my prayers and my love,
    Maggi (McCutchen), Charlotte, NC

  6. Dear Liz and Maddie,
    As always, you are in my prayers. On 10/18 I will join thousands of other “purple people” in San Francisco and will be running my half-marathon in honor of sweet Maddie. She has been an inspiration to me and the rest of my team. We will continue to fight and pray until we can cure these cancers and the side effects of the treatments.
    Thank you for the updates. Good luck with the new diet.
    Fondly,
    Lori

  7. hey, all…have been thinking about you a great deal, both with what you have been enduring and with what you have ahead of you (both with deployment and maddie’s treatment)….will keep you guys in our prayers..

    and, just a thought..don’t know if you are with the EDIS program on base, but when i worked for the CDSA in New Bern, we were able to get all kinds of things for families that insurance wouldn’t pay for-special mattresses and other large ticket items. it might not hurt to look there.

    also-other funding for items and services through state of nc called cap c-developmental cm or doctors might be able to give you more info or help with program (if it hasn’t been hit by program cuts like everything else in this economy)…..cap c does a lot, but basically can get money to families to help them take care of their children with developmental delays or other health issues….also, if qualify, will also get a medicaid supplement insurance that ensures a lot more medical treatments be paid for than just with tricare….just thought i’d offer some of my info from when i was CM with CDSA….the application for cap c (and i think there is a cap d, which provides funding based on developmental delays, or vice-versa) can be found on the internet….you talking about the bed situation made me think of this (and wish i would have mentioned it earlier, but i guess i thought that the doctors might have recommended it if they thought she would qualify…doesn’t hurt to ask them, though!)

    if have questions, call or write….

    take care,
    danielle, sam, and aida

  8. p.s. qualification for the cap c and cap d programs are made based on medical and developmental need, not on financial need or anything else like many state programs…at least not the last time i applied for it for one of the kids i worked with…

    take care…

  9. I am happy that things are going a little better. I understand the stress of deployments when dealing with a child having hundreds of seizures a day. As I have said before, I am so happy that we are no where near that anymore! We are down to maybe one or two a week! But, I was going to ask is Maddie on ECHO? We got Anna’s hospital bed through ECHO. We also got a special bath chair- so we could bathe her safely through ECHO. All we needed were dr orders for the bed and either OT or a PT’s order for the Bath Chair.
    I hope you get a chance to really enjoy your time together! Oh, and by the way, My son was almost 3 when he completely stopped nursing so don’t feel bad.

  10. Liz, If ever you want a friend to hang out with, if only for a bit, I’d love to see you guys. Just let me know when I can come by and say hi. On that note, if you ever need someone to run errands for you or anything else, I’d love to help you out any way I can. You say the word. I am glad to see all of you in good spirits. We continue to pray for sweet Maddie.
    Cherri

  11. God I hate seizures and everything they steal from our children. I will never understand why they came into our lives and why they are so intent on staying around. Maddie has been (and continues) through so much. As have you and Brandon as this is not a journey she takes alone. I am glad that you have reduced the number of seizures by 80% but 100 a day is more than 4 an hour. One a month is too many, in my opinion. I have high hopes for keto. I know it is going to be a really difficult adjustment for both of you. But illness has taught you flexibility I am sure and I know you will both adjust.

  12. Hi Liz!
    Well, it sounds like things are better. I’m so sorry you have to wean Maddie. I had to wean Abigail at 23 months and honestly it wasn’t nearly as bad as I thought it would be. Email me if you want to know how we did it. I was so sad to do it. However, after it was done…I felt somehow refreshed and free. It also greatly improved her eating.

    I have a new email address that I put in the form here for you.

    Good luck with the new diet and getting a safe bed for dear Maddie. She looks great in the pictures!

    Much love,
    The Bolenbaugh Clan

  13. Thinking of you, hoping the weaning is going o.k. and that the ketogenic diet will provide much-needed relief to sweet Maddie.

  14. I started reading the other evening and didn’t get to comment b/c C was wreaking havoc in the next room.

    I too hate the is it or isn’t working part of trialing meds. It’s enough to drive you crazy! i pray that the Keto diet works for Maddie. It is tough at first, but you will get the hang of it with time. If you need any help or want to vent at anytime with it…i am here. I absolutely LOVE the pictures. SHe looks so incredibly happy. Isn’t it amazing how these kids can smile through all that they are going through? I have to agree with you that words cannot express my hatred for seizures. hang in there. {{{hugs}}

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