Steroids, Moving, and Doctor Visits

Maddie has now been on steroids for 36 days and we have 20 more to go (but who’s counting?) until she is fully weaned off them. They do not appear to be her miracle drug. Things have been highly variable on them, so it is truly hard to say what is happening at all right now. She has had days with no clusters and just a few of what we call her “single spasms” and then she will have a fifteen minute cluster and they will seem to be back on their regular every three hour schedule. I honestly have no idea what is going on.

In order to try to find out, we had a short EEG Tuesday morning and a visit with our Neurologist. The EEG showed some improvement, but in the 20 minutes they were recording she had ten minutes of seizures, so it is hard to imagine that it is that much better. The results of the Neurologist visit is that we have restarted the Vigabatrin wean and introducing a new AED, Lamictal. This drug must be introduced slowly and takes about 6 weeks to get to a therapeutic dose. So onward we go…….ever hopeful that we can stop the seizures…..but the optimism of early days is gone. It has been replaced by a skepticism and suspicion of what each next thing may bring.

So, what else is going on with us? We moved to Jacksonville last week. Or at least we moved our stuff to our house on base at Camp Lejeune. It is cute and old and very different from anywhere we have lived before. The floors are the original wood floors (with a new coat of Poly after each inhabitant) and the have all the requisite old house squeaks and groans. It is a about 1000 square feet smaller than our last house, and we even had too much stuff for that house. So we are trying to keep things simple and uncluttered and either donate or store everything we can’t picture needing for at least six months.

For those of you wondering why we have chosen to live on base after always living out in town in the past, I will explain. The base housing is 2.5 miles from Brandon’s office, so he is much closer if I were to need him suddenly (this happens often). It also means we have no monthly bills, other than cable or Internet, so when he leaves on deployment, if I just want to come back to Charlotte, I won’t have lots of bills to worry about. They also take care of our yards for us on base, so that is one less responsibility for me when he is gone. And it is also very safe, as you can imagine. The people on our street have been so welcoming already. There are also great running trails all over base and super playgrounds (not that Maddie is ready for them yet, but I can hope!) and our house is 1/2 mile from the water and fabulous views. So I think it is a good thing, even if it means getting rid of alot of our stuff. Neither of us has had time to enjoy our “stuff” much over the last 21 months, so it is not a big deal. Except that sorting through it all is a major undertaking.

I would not suggest moving while one’s child is on ACTH to anyone. We sometimes think we can handle most anything, but this has been tough. We really hope the sleep situation improves soon because it is just hard to be sleep deprived. I don’t really remember what it is like to have a good night’s sleep. The other night I got 4 hours and 45 minutes in a row and it was like I had died and gone to heaven. Sleep will return to our lives someday, I am sure of it.

After our appointment yesterday, my Mom, Maddie and I came on back down to Camp Lejeune. We had been back in Charlotte for our oncology visit and counts check. Her counts looked good, so that is always good news. It certainly is easier to handle the seizures when the relapse fear is pushed back down for a few weeks. We also had her catheterized Monday to follow up on her possible UTI and the culture was negative for any growth. So that, too, is good news.

We hope to stay in Jacksonville through early August when Brandon leaves for a training exercise in California for a month. During this time, I hope to find and hire I nanny we will love to help out in the coming months/years. Hopefully we can also get the house all unpacked and all of our extra junk in storage. We think that Brandon’s deployment is looming closer than we had originally planned so we want to spend as much time with him as possible. But his Battalion is incredibly busy right now preparing for deployment, and he is actually in field on an exercise right now for 3 days.

I think I actually have more to say, but I am tired and Maddie just fell asleep after having another ten minute seizure. Not good. So I am going to try to sleep while she does.

Please keep our amazing little girl in your prayers.

Love to everyone,
Liz, Brandon, and Maddie

11 thoughts on “Steroids, Moving, and Doctor Visits

  1. Wishing so,that the news on ACTH was better.I am so sorry,you both and especially Maddie, has to endure the truly awful side effects of this drug and yet still not yielding improvement.As you spoke of the sleepless night,I was taken back in an instant to those days with Zoey.They were absolutely the worst and the most draining days of all.She literally sleep at little spurts of say 15 minutes at a time .. including the nights.And here you guys are,sleep deprived and stressed and moving and all the while you still are doing the frontline battle of ALL.Seems way too unfair and we pray that something begins to give a bit.Prayers filled with hope as your journey continues with sweet Maddie.

  2. I think Lamictal is next on our list too.

    Probably a good idea to tone back on the ‘stuff’ in your life, I see that as a real positive. I am inching ever closer to what I call a Great Purge. Happens to me every decade or so. I go through the house like a wild man throwing out or donating anything I haven’t used in 2 years or more that is not sentimental.

    While seizures blow massive chunks, I am thrilled that:

    A) You are settling in closer with Brandon on base and hopefully getting more time together.
    B) Maddie’s counts are good and no infections. WONDERFUL.
    C) ACTH will be gone soon since it didn’t really work.

    Been thinking about you guys, hoping the moving was going well.

  3. Liz, Susan and I pray for all of you every day. As I told you earlier we live less than an hour from the base. Please call us if you need anything. We will drop what we are doing and come as fast as we can. We love all three of you. Tom

    Cell: 252-269-2745
    Home: 252-838-1179

  4. Liz
    Glad to hear the good news about the counts and the negative culture. So sorry to hear the seizures continue. Also, glad the three of you will get to spend more time together. Prayers continue for your beautiful and precious child and for all of you.
    Good luck with getting rid of “stuff”. I think I need to move so I can do the same thing!
    Love to all,

  5. Hi Liz and family, I read all your updates and feel so much for your ongoing challenges. The sleep deprivation alone is so challenging…when on an ongoing basis…then the moving, the long term steroids, the other meds, etc. I am so glad you are able to get settled for a little while at least…although the moving must be very tough with all that you have to do with Maddie every day. I continue to be in awe of your ability to keep going every day through all that you have to. I hope you are able to find a great nanny/helper – you so deserve and need the help.

    Take care, Connie (and Sophie – 4.5 yrs old and now one yr off treatment with lasting effects)

  6. Sounds like you’re making very smart…grounded…choices. Not that you need the validation. *smile*

    Old house squeaks are kinda charming…

    Have you thought about respite? Hiring a nanny would probably be more practical…ie. you have more options n’ stuff. But we were finally approved for 8 hours of respite…and our CNA has been such a blessing. Just letting me get some rest. Or spend time with the big kids. And all that jazz. I’m not sure how your insurance works…but it might be something to bring up with your Early Intervention Coordinator. Especially if you could have someone help out with the night shifts. ACTH is hard core with the nights…

    Seizures suck. You know that.


  7. liz,

    im sorry to hear that the ACTH has not proved to be the end all to maddie’s seizures. i’ve been thinking about you guys so much and have been praying that things were improving and that the move went well for you all. even though the ACTH didn’t do the trick, it is good to know that there is an action plan to follow…sometimes it is just comforting to know that you have another plan in place.

    just know you guys are doing an amazing job right now! having a child on ACTH is insane in itself at times and coupling that with a move and trying to settle in and have family time is overwhelming…but you are doing it, you are both doing it for maddie.

    praying for strength, peace, and healing for you all.

  8. Hey Liz,
    Welcome back to Jacksonville. I wish I was there with you. We like it here in Indiana but it doesn’t feel as much at home as North Carolina. I hope you get all situated soon and without much frustration. I think about you guys all the time. You are such a fantastic mom. That is truly one thing Maddie is blessed with. Take care of yourself.


  9. Can’t begin to imagine dealing with all that is on your plate. My daughter Rhema was on Lamictal for a time… we’ve moved on to other drugs, but thankfully Lamictal did not cause any negative side effects.

    Praying for you!

  10. Hi Liz!
    Just checking in – thinking about you – hope you’ve enjoyed your time in Jacksonville and that your news with Maddie’s seizures is improving. You are never far from our thoughts.
    Lots of love,
    Carrie, Zack, Elizabeth & Mary Margaret

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