Category Archives: ADEM

Acute Disseminated Encephalomyelitis
Rare autoimmune disorder, even more rare in children
Posts in this section share some of our ADEM journey with our young daughter who got ADEM at 8 years old.

Why I Spend More for Less Ice Cream

I’ve been accused of being from out of town. After all, who else would have an app for all the local grocery store chains and be able to shop savvy in the middle of the only incorporated town in all of Marion County, Texas? Yes, I’m that kind of person. I like to save when I can.

Am I an extreme coupon clipper? No! I did research on that and found out that part of the way they get their coupons is by getting online, finding coupons that are being used for a particular market for introduction and evaluation and changing their zip code to match so they can download that coupon. In other words: that $2 off coupon is only good in the Northeast where they are doing some market research, but if you change you zip code to a northeast zip code, you can get one of the coupons. My ethics won’t allow me to do such things. So, I save where I can and budget and do my best. I play the balancing game between how much my time is worth, how much gas would be spent going to different stores compared to the amount of savings I would get. It’s what you have to do when you’re on a budget!

So when in the world do I spend more for less ice cream? The answer is simple. I love my daughter.

Greta is going through that puberty phase where some girls get rail thin and others get pudgy and round. She’s going for pudgy and round. She’s also emotional, thanks to ADEM, so she gets attached to foods she loves and is sometimes a stress eater. Let’s see, her brother left for college and we are relocating to Mississippi. Nope, no stress in this household. On top of it all, Greta is dealing with habits and appetite binges she developed when on a huge dose of steroids to save her life during ADEM. She’s got a lot of things going against her right now. She needs all the help she can get. So I buy more expensive ice cream.

I’m not talking about buying the generic store brand versus those that claim to be the best ice cream in the country. I’m talking about spending more to buy those prepackaged ice cream cups. Greta loves ice cream! It’s a love language for her and it helps to calm her down in the middle of one of her ADEM mood swings. But I can get much more ice cream for my money if I just buy a half gallon of it and everyone scoops their own. That’s the problem. Greta scoops out way too much. Actually, we all do!

So I’ve come to the point where spending more money, to get the smaller and already packaged cups of ice cream is the best thing I can do to help Greta learn portion sizes with the treat she loves so much and gives her so much comfort. If you’ve ever been through a life threatening situation that leaves you emotionally scarred, you’ll understand how important it is to have a comfort item in your life. So yes, that’s why this budgeting and saving mom spends more for less ice cream. I look at the heart of the matter – a little girl going through so much at one time and I decided she’s more than worth it!

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What Tools Should You Have in Your Toolbox?

If you hang around neuro-psychologists long enough, you just might pick up a couple of their phrases. Going through the evaluations, various testings including follow-up MRI’s and so forth with Greta’s Acute Disseminated Encephalomyelitis (ADEM), we’ve spent some time with a great neuro-psychologist. One of her phrases that we love -Tools for your Toolbox!

Basically, this doctor, who is a favorite among all the kids and parents because she is just so awesome, says her goal is to make sure Greta has enough tools in her toolbox to handle dealing with ADEM in day to day life. Now nearly three years after that terrifying ordeal of seeing my little girl hospitalized and hooked up to all kinds of things, I realize that tools in the toolbox can apply to any of us. I’ve also seen that we’re a lot happier when we embrace this.

I’m getting ready to send my firstborn off to college. He has his own issues that he deals with, like being an intense introvert and being addicted to his routines. Seeing him being forced by circumstances to change his routine is like watching ants that have lost the line. So yeah, I’m a little nervous for him, but I’ve taken on Dr. Harder’s mantra and I’m doing everything I can to make sure that Michael has the tools he needs in his toolbox to deal with life as a college student hundreds of miles from home.

So what tools should you have in your toolbox? That’s easy, the ones that help you cope and deal with life – in addition they should be legal, moral and ethical. That usually helps. While there will be similarities, there will also be tools that will be different for each person. Greta, being very literal now and decreased math skills due to ADEM, needs tools to help her remember to ask people to help her when she doesn’t understand something. She needs to tool of asking others to slow down and help her until she gets that joke, because she’s so literal.

Michael, the extreme introvert, knows he would rather do just about anything before talking on the phone to anyone. So a tool in his toolbox is going to be a good friend willing to make a phone call when he can’t.

What tools should be in your toolbox? Find those things that help you cope with life and deal with the day to day stresses that living on planet Earth serves up on a regular basis. The amazing thing is, you’ll usually find tools for your toolbox in your family, church, community and friends.

 

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Filed under ADEM, Community, Family, Parenting

What She Found in the Closet

Personality. My daughter has it. In fact, she has so much personality she has little time for things like cleaning her room on her own. Personality people love group activities and let’s face it: cleaning your own room isn’t a group activity. Greta loves to help in groups and will be the first to volunteer and she’s great at cheering on the team. That’s why we love personality people.

But her room is still a mess and the boys don’t wan to make it a group activity that Greta will love and help their little sister out. So we bribe them. Matthew is paid to work in the room for a while. Greta is thrilled to have company on doing a chore and the room gets cleaned. We gloss over the arguments and chalk them up to simple sibling rivalry.

The next morning, Greta came out with a huge smile and one of her recently rediscovered treasures, found deep in the recesses of her previously hideous closet. It was an envelope full of homemade cards from the kids at her school – from when she was in the hospital. She came out waving the envelope and shouting to the world:

See mommy, people do love and care about me.

Of course I responded that I never had any doubt and smiled, and tried not to cry, as Greta read card after homemade card from different schoolmates expressing that she get well soon and how much they loved and missed her. It’s been two years since our lives changed and ADEM came to our home, but those words of love and encouragement still found loving reception in Greta’s heart, and mine.

I told my class at church – I wish everyone could go clean their closet and find an envelope full of the love and encouragement folks have given them when they went through a difficult time – and remember that people still love and care about them. Go ahead, right now. Go clean out the closet of your memories. Don’t dwell on the obstacles and hurts. Remember the love and support of those who stood by you and perhaps even carried you through that time. Like Greta, hold those precious memories high and say to yourself that it’s true! People still love and care about me!

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Filed under ADEM, Community, Family, Parenting

Easy to Forget

I’ve written before about how grateful I am for finding someone or a group of someones who can understand what you are going through – community. It hasn’t changed. Recently I put a question to the ADEM group on “Ben’s Friends,” a website dedicated to connecting people with rare diseases, including ADEM, about helping friends understand.

The response from a man in his 50’s was just what I needed to hear. He’s been through what my little Greta is going through, but as an adult, he can express his needs a little more reasonably and in the typical “adult” manner than Greta can right now. His advice helped me a lot. His kind words to Greta were that she had nothing to be embarrassed about. All she had to do was ask people to slow down a little or go over something again, it’s not a crime to ask.

I thanked him and told him that even Karl and I can forget at times that Greta needs a little extra help here and there, because everything looks so normal on the outside. He wrote back that his wife has the same ordeal. She’s so grateful to have her husband back after he had been through and had to relearn to do that sometimes it’s easy to forget that he still struggles sometimes.

When everything looks “normal” on the outside. It’s easy to forget. It’s easy to forget that there are still things on the inside that trouble us and make us need to ask for a little bit of extra help. The problem is, we get tunnel vision. We see “normal” so much that we aren’t always prepared for the after effects of ADEM to rear their ugly head and we have to slow the train down and adjust. It catches us off guard. Because we are human and it is easy to forget.

Praying that when I’m jarred back to the reality of ADEM and the fact that life will never be “normal” again; that it doesn’t take me quite so long to adjust each time. Perhaps there are others in my community, my circle of friends that also need me to pay attention to when they need a little extra help. There are many out there that need us to be prepared for anything – not easy to forget.

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Short Circuit

Like it or not, once you start messing around with all that amazing stuff inside of your skull, you are going to have some consequences. With our daughter, we are glad the lesions in her brain are no longer growing, that it is the one time ADEM episode, but the fact of the matter is there are still after effects of the lesions in her brain.

Greta is one of the many sufferers of a disease or disorder that no one can easily see on the outside. There are many issues, some chronic, some acute, but all leave a person feeling isolated to some extent. They look “normal” to most, but those who know them best know the more of their daily struggles.

Most kids that suffer from brain injuries/lesions, try so hard to hold it together at school. They let it all out at home, full force. Lucky us. At least Greta gets to experience a mostly normal day at school with friends. At home, however, when her will and our wills clash – it can be a nasty battle. The last one left Karl and I on the wounded list for hours. Greta recovered in a matter of minutes – cheerful as ever.

After debriefing over the latest explosion of anger and emotions from our daughter, we discovered something. She has a short circuit. Perseveration – latching on to something and not letting go – is one of her issues. If you try to change Greta’s mind on something she is latched on to – let the battle begin! What we learned is we try to go to step 1 of reasoning out a solution agreeable to all. Greta immediately launches a nuclear strike and takes no prisoners. She no longer has the ability to follow reasonable conflict resolution patterns in areas where she is experiencing perseveration.

Our task now: figure out how to help Greta develop a new circuit so the battle doesn’t start off immediately with a missile crisis – will she or won’t she? On this journey of ADEM effects, we learn more and more about the amazing brain and how our bodies cope. My prayer is that we learn enough to make a difference in Greta’s post ADEM life and the lives of others that suffer due to brain injuries and illnesses.

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Filed under ADEM, Family, Health & Wellness, Parenting

Cheer!!

Being at The Center for Courageous Kids is a life changing experience. Going to a camp designed for kids with medical issues is freeing.
There is so much to write – too much actually. But when the little girl paralyzed from the shoulders down was put on a horse and got to ride, we all cheered for her!
Trained walkers held her back, head and trunk in place as they walked beside her on her horse.
So glad someone had the vision to create a camp for children with special needs!!

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Video Tears & Community

I got an email today asking me to review my application process for the special summer camp we have applied for – regarding Greta’s ADEM. It seems 40 families (it is a family camp) have signed up and they only have room for 30 families – unless some smaller families double in up in the units. In the email, they included a video of introduction to the facility – the Center for Courageous Kids.

Maybe it’s just because I’m a mom. Maybe it is just because Greta is still so young and we are still discovering what all lifelong issues ADEM will leave her to deal with. Whatever the reason, I couldn’t keep my eyes dry while watching that video.

There is a saying that unless you’ve been there, you just can’t understand. That’s what is so great about community. When we get together – we are stronger. When we get together – we find understanding and share ways to cope. I’m looking forward to attending this camp and meeting other ADEM families and sharing stories and practical day to day tips. Each child experiences ADEM differently, depending on where the lesions were located, how large they were and how many there were, as well as how long it took to get properly diagnosed and treated. So many variables, yet at the same time there are still classic ADEM leftovers that almost every patient, especially the children have to deal with.

What would we do without community? What would we do if we always thought we were the only one in the entire world that suffered the way we suffer? Take the time to be open about yourself and what you are going through – whatever it is. Look for support groups or fundraisers that help create awareness or contribute to vital research. You may have a handle on your situation yourself and think you don’t need community. I’m not going to congratulate you. I’m going to tell you that out there is someone who doesn’t have it figured out and they would be thrilled to talk to someone who has been through it and knows some of the ropes.

We need each other. We need community. Just google center for courageous kids and watch their introduction video. It just might change how you feel about community.

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