Kaeden

$11,240 of $1 goal

Raised by 133 people in 36 months
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Kaeden has a hormonal condition that causes seizurelike episodes.  Her story is fascinating and filled with love.
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Lots of Static
Journal entry by Gwendolyn Babcock — 1 minute ago

It's been quite some time since we've shared any updates on Kaeden. We haven't had anything to really share for months, so we've stayed pretty quiet. However, in January we had a window open, and we started to get answers.

In January, reluctantly, we went back to where we began our journey...the Pediatric Neurologist. At the suggestion of Kaeden's main specialist, her Pediatric Gynecologist, we prepared for what we thought would be a frustrating, meaningless, unanswered appointment. Boy, were we completely wrong.

Let's back up a bit though...In 2016, after much data collection on my end, I requested a referral be made to the Pediatric Gynecologist through the Pediatrician. I had been noticing that these episodes were strangely entangled with her cycle. I recorded every nuance, detail, episode, medication, food, weight and menstrual cycle. Things were so eerily connected and rhythmic it seemed. I shared the info with the PG and, here I wasn't crazy, it actually was a possibility that all the things I recorded could be connected. We decided to have Kaeden try a medication called Norinthindrone, or progestin (Progesterone), and see if we could get everything to calm down. It did work for a few months and we were amazed. The cycles stopped, the episodes stopped, and life seemed to be back to normal. About a year ago, however, the medicine slowly stopped working and by November of 2017 this is when her PG thought it would be prudent to revisit the Neurologist. Thus we did and began our 2018 with interesting information.

We met with the head of Peds Neuro (incidentally our appointment was 3 years from the date of the first recorded incident) and he reviewed Kaeden's case going back to 2015. He did a thorough neuro review, talked with Kaeden and asked her about the episodes, from how she felt, what it sounded like, if she could see and what she felt like after it was over. After a conference call between her PG, Kaeden and I and the PN, we started to understand the diagnosis we were given. Catamenial Catatonia.

Now, try looking that one up. You won't find much and the information is ambiguous. If you find more than three case studies/Dx's, then I beg you to send them my way. This is a few in the world population disorder. However, I believe there are more women in this world that have this condition and have been misdiagnosed.

Hormones are very difficult. Women are complicated. Hormones and women...go figure. Here's the simplistic version of hormones that I've come to understand in my studies. The hypothalamus in the brain sends a signal to the pituitary gland. The pituitary gland then tries to contact the hormones in the body and sends a signal. What the pituitary gland wants to hear back from the hormone is information that makes sense. Think of tuning a radio. When you tune it and get a station, you hear music. When you don't, you hear static. Kaeden's pituitary gland is sending out these signals and is getting A LOT of static back from them. Thus, signals aren't being sent or are getting skewed. This is when the episodes happen and hormonal issues occur and life is pretty crappy for a 15 year old girl.
We are working with her AG to try to find the right medication for Kaeden. We haven't found the right one as of yet. But, as I've learned thus far with this condition, it's not a fast fix. Patience really is quite virtuous.

We are thrilled that Kaeden finally has a Dx. Kaeden is estactic. She finally feels that she is understood and there is a name for what she has been dealing with for years, albeit extremely unknown. She continues to struggle with episodes as her medication gets regulated, but they are mild in comparison to what they were at onset. Her Adolescent Gynecologist works with her almost bi-monthly and has been outstanding and we are thankful. Our family is also very thankful for all that have asked about her and pray for her.

We are strong. Our God is stronger. Amen and amen.

Blessings,
The Babcock's


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"No news is good news" or "All good things take time"  
How many times have we heard these simple sayings and passed them off as just part of the English language.  And yet sometimes, when we really dissect the phrases and apply them to our situations, they don't become so commonplace.  Yes, "no news is good news" in most medical instances.  If there were terrible news, a doctor would get in touch with you and alert you to the situation and have you get resolution as quickly as possible so that you could heal.  And, "all good things take time" usually is a wonderful thing to look forward to, especially when you are having a baby, or building a house or something exciting is on the horizon.  So where am I going with all of this?

Kaeden has had a very good summer and beginning of the school year.  If you have followed her personally or bits and pieces on FB, you'll notice that she went to camp, and we went on vacation, and the biggie was she started back to school.  She even did so well in school with straight A's and making Honor Roll that they moved her up a level and she is being challenged more.  Remember, last year, this kid couldn't remember how to add single numbers.  So, pre-algebra is a ray of sunshine and pretty fun for her.  She loves science still.  Loves math again.  Loves delving into novels and reading.  And is kicking some pretty decent butt in US History. So, all in all, academics are amazing.  

Academics though is about all she's got at the moment.  All though she is an accomplished horseback rider, show season is over so things are a bit slow at the barn.  She had a seizure this summer at swim practice in the pool in June.  This lead to her being removed from the swim team.  As one of her coaches, it was so hard for me watch that possible dream go.  Maybe it was my dream for her, so I just let it sink (definite pun intended).  She also has horseback and ended her year quite well on Sam.  Again, the kid that couldn't walk last summer was doing crossrails this summer.  How about that for determination.  The school is a bit squirmy over her doing any gym classes or any physical activity because she has had four seizures during the gym class time since school started.  She also has had two seizures in the morning at school.  Due to this recent seizure activity, she is now on a reduced schedule at school until the end of December and will have to leave around 12:15 daily.

Every time she has a seizure there is an ambulance call.  Every time time an ambulance comes, we go to the hospital.  Every time we go to the hospital the ED docs are clueless to what is going on with her and treat the acute...which is just to make sure she is breathing, blood work is good, able to see, talk, and lucid.  And then discharged.  They do not treat to fix the problem.  That's not their job.  Sadly, I know more about Kaeden then the doctors in the ED.  I really know more about Kaeden right now than any doctor that has treated her.  I say sadly because I really find it difficult that a doctor wouldn't WANT to delve into this child of mine.  I look at it as a gold mine of knowledge for the future.  I don't have a medical degree, obviously.  I just have patience and a brain like a sponge.  And an amazing iPhone that keeps my meticulous notes for me.  I'm not searching for answers for her because I'm her mother, I'm generally interested in what is going on the more and more I dig into the case.  As I connect more and more dots.  Yet, no one wants to take the time to connect with me.  My prayer usually at night or in the morning is for me to meet that doctor at some point.

Chronic diseases are hard to manage.  They aren't quick healers or quick deaths.  They last for a very long time.  Maybe forever.  They take a toll on the patient.  They wear the caregivers down.  They do funny things to people after while...they make you grayer, fatter, bitchier, more forgetful, filterless, lonelier, BUT stronger, wiser, fiercer, and brave.  I've learned so much from Kaeden over the past two years and everything she has endured.  I can't even believe the woman she has become thus far.  She blows my mind at times.  She is so mature and so well spoken.  And so freaking intelligent.  She certainly picked this up from Devin.  She is learning to not back down and to become one fierce vixen from her mamma...never take no for an answer!

So back to the beginning..."No news is good news" and "All good things take time"...Well, we aren't satisfied any longer with the "no news philosophy.  We waited here for awhile and gave Kaeden a rest from the tests but it's time to seek again.  The pattern of seizures on a monthly basis with her hormones and progesterone levels are too strange to not pursue diagnostic hospitals now.  I'll be looking into DuPont and also NIH Rare Disease per her Pediatrician.  I'm sure you all may have ideas for other places and many have expressed them to me before, but as you read this, understand, to pick up my family and just go somewhere isn't quite that easy.  I also keep Kaeden's mental health in mind as I move forward because it's something that she has dealt with for 2 years now, so heading somewhere for testing because it's supposedly renown, I can't just do for multiple reasons.

And lastly, "All good things take time"...I wish the outcome of this would be a beautiful artistic sculpture, or a blueberry pie or something like that.  But, this isn't that kind of good thing.  I'm not sure if Kaeden will ever grow out of these seizures.  I'm not sure if she will ever get "better" and be like she was when she was 11 before all this started.  But what I do know is that we are forging a trail.  She is taking the machete and clearing an amazing path in front of her and what will be behind us is going to be a paved road that many children will be able to run on and they are going to have a diagnosis and a plan for their future.  All because of Kaeden and Devin and Rory and I.  And God.   
+ Read More
"No news is good news" or "All good things take time"
How many times have we heard these simple sayings and passed them off as just part of the English language. And yet sometimes, when we really dissect the phrases and apply them to our situations, they don't become so commonplace. Yes, "no news is good news" in most medical instances. If there were terrible news, a doctor would get in touch with you and alert you to the situation and have you get resolution as quickly as possible so that you could heal. And, "all good things take time" usually is a wonderful thing to look forward to, especially when you are having a baby, or building a house or something exciting is on the horizon. So where am I going with all of this?

Kaeden has had a very good summer and beginning of the school year. If you have followed her personally or bits and pieces on FB, you'll notice that she went to camp, and we went on vacation, and the biggie was she started back to school. She even did so well in school with straight A's and making Honor Roll that they moved her up a level and she is being challenged more. Remember, last year, this kid couldn't remember how to add single numbers. So, pre-algebra is a ray of sunshine and pretty fun for her. She loves science still. Loves math again. Loves delving into novels and reading. And is kicking some pretty decent butt in US History. So, all in all, academics are amazing.

Academics though is about all she's got at the moment. All though she is an accomplished horseback rider, show season is over so things are a bit slow at the barn. She had a seizure this summer at swim practice in the pool in June. This lead to her being removed from the swim team. As one of her coaches, it was so hard for me watch that possible dream go. Maybe it was my dream for her, so I just let it sink (definite pun intended). She also has horseback and ended her year quite well on Sam. Again, the kid that couldn't walk last summer was doing crossrails this summer. How about that for determination. The school is a bit squirmy over her doing any gym classes or any physical activity because she has had four seizures during the gym class time since school started. She also has had two seizures in the morning at school. Due to this recent seizure activity, she is now on a reduced schedule at school until the end of December and will have to leave around 12:15 daily.

Every time she has a seizure there is an ambulance call. Every time time an ambulance comes, we go to the hospital. Every time we go to the hospital the ED docs are clueless to what is going on with her and treat the acute...which is just to make sure she is breathing, blood work is good, able to see, talk, and lucid. And then discharged. They do not treat to fix the problem. That's not their job. Sadly, I know more about Kaeden then the doctors in the ED. I really know more about Kaeden right now than any doctor that has treated her. I say sadly because I really find it difficult that a doctor wouldn't WANT to delve into this child of mine. I look at it as a gold mine of knowledge for the future. I don't have a medical degree, obviously. I just have patience and a brain like a sponge. And an amazing iPhone that keeps my meticulous notes for me. I'm not searching for answers for her because I'm her mother, I'm generally interested in what is going on the more and more I dig into the case. As I connect more and more dots. Yet, no one wants to take the time to connect with me. My prayer usually at night or in the morning is for me to meet that doctor at some point.

Chronic diseases are hard to manage. They aren't quick healers or quick deaths. They last for a very long time. Maybe forever. They take a toll on the patient. They wear the caregivers down. They do funny things to people after while...they make you grayer, fatter, bitchier, more forgetful, filterless, lonelier, BUT stronger, wiser, fiercer, and brave. I've learned so much from Kaeden over the past two years and everything she has endured. I can't even believe the woman she has become thus far. She blows my mind at times. She is so mature and so well spoken. And so freaking intelligent. She certainly picked this up from Devin. She is learning to not back down and to become one fierce vixen from her mamma...never take no for an answer!

So back to the beginning..."No news is good news" and "All good things take time"...Well, we aren't satisfied any longer with the "no news philosophy. We waited here for awhile and gave Kaeden a rest from the tests but it's time to seek again. The pattern of seizures on a monthly basis with her hormones and progesterone levels are too strange to not pursue diagnostic hospitals now. I'll be looking into DuPont and also NIH Rare Disease per her Pediatrician. I'm sure you all may have ideas for other places and many have expressed them to me before, but as you read this, understand, to pick up my family and just go somewhere isn't quite that easy. I also keep Kaeden's mental health in mind as I move forward because it's something that she has dealt with for 2 years now, so heading somewhere for testing because it's supposedly renown, I can't just do for multiple reasons.

And lastly, "All good things take time"...I wish the outcome of this would be a beautiful artistic sculpture, or a blueberry pie or something like that. But, this isn't that kind of good thing. I'm not sure if Kaeden will ever grow out of these seizures. I'm not sure if she will ever get "better" and be like she was when she was 11 before all this started. But what I do know is that we are forging a trail. She is taking the machete and clearing an amazing path in front of her and what will be behind us is going to be a paved road that many children will be able to run on and they are going to have a diagnosis and a plan for their future. All because of Kaeden and Devin and Rory and I. And God.
+ Read More
It's been a few months since I've written. No sense to write when there really hasn't been anything new to tell you. Slowly things have been improving. S-L-O-W-L-Y. Kaeden has been doing well in school. She is going to pass 7th grade from her home schooling. She is relearning many things from 6th grade and learning many more new things. We are amazed at the brain regenerating. She is back to riding and is back in the show ring. She's fallen in love with a horse that's named Sam. He's an old man and does everything that old men do, his own thing...but Kaeden is patient and they are a perfect match. She started riding her bike with us on the rail trail and has ridden at least 20 miles this week. And as of tonight, joined the swim team. I was coaching Rory at a meet, and Kaeden saw her friends there and remembered swimming last year before everything went downhill and just finally broke down and said she wanted to do it again. We scrambled and got her in the meet and she swam. I can't even believe it. Our daughter couldn't walk last year. Couldn't remember anything last year. Couldn't even talk or write at times, and now she has been blessed by the Lord in so many ways.

What I want to share with you is this, we are not out of the woods. However, we never put out the light in those dark woods. We just kept walking. Sometimes I felt like we were walking uphill, in the dark, trudging through thick mud in the middle of a lunar eclipse. But we kept moving up the mountain. And then we get to the tops of these mountains and we look out and every single time the sun is rising. It's beautiful. It's so wonderful, we always seem to get to see the rising sun when we are at the top of the mountain. It makes going down the other side of the mountain easier, because we have the day to travel. I know it will get dark again, but it's ok. We are blessed. God is with us.

The second thing I want to share with you is, time. Never under estimate the power of time. In our fast paced society of quick indulgence and instant gratification, waiting never comes easy. WAIT! Be patient. Time is our friend. It heals. It helps us see clearly. It helps us track things. Allow time to just tick tock away. It's ok.

Watch the video attached and be thankful to God for what He has done. Especially how He answers prayers.

Amen. And Amen.
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Read a Previous Update
Bonnie Kestner
34 months ago
1
1

Dear Father, I bring Kaeden and Gwen to Your throne of grace. Have mercy on them—they have been through so much. I pray fervently for healing, hope, encouragement, and for Your peace that passes understanding. Give them good sleep, wisdom, direction and strength for the next part of their journey. Help them to feel your loving presence with them every step of the way. Thank You for drawing them closer to you and for the love and compassion they have shown toward others. Bless them abundantly, dear Lord, and touch Kaeden with Your healing hand. I pray all of this in the strong name of Jesus. AMEN.

+ Read More
Connie Manchester
4 months ago

I continue to pray for your family! Especially, for Kaeden! Of course her hormones are guiding her mental health! It’s well known in many circles!

+ Read More
Lona Terrell Kluttz
32 months ago

Praying with you and for you. Love you all. ❤️

+ Read More
LuAnn Hunt
35 months ago

I look forward to your updates everyday. You and your daughter are an inspiration to me. I thank God for you and your story.

+ Read More
Marilyn May Miller Karr
35 months ago

i'll be back in baltimore after thursday of next week. glennell gave me your name. i'll be around to take you out to dinner and to spend time with you in the evening hours to listen. send me a message on fb and i'll give you my phone number, and i'll help take care of you so you can do everything you need to do for your daughter.

+ Read More
Sheila Mercado
35 months ago

Hi, you don't know me but I am a friend of one of your former Sweet Briar classmates. She told me about your daughter and said you need prayers. I happen to be a member of a church that fully believes in the power of prayer. Your precious child is on our prayer chain and I am asked, almost daily, how she and your family are doing. Several people have asked if she can receive cards and if so, where should we send them? We do not know Kaeden but she is a child of God which makes her a part of our family. We will continue to pray for her until God's healing hands touch her and she's back home with you and your family, happy and healthy. May God continue to bless you all.

+ Read More
Jennifer Gooler Kerns
35 months ago

Thank you for having the strength to update us. We forever pray for Kaedens health. I just wish I could trade spots with you for one day so that you could rest up. I love you my friend.

+ Read More
Jane Dellinger
35 months ago

I hope you had a good sleep. Gwen, try to take care of yourself. Do some yoga breathing or a simple meditation from time to time. You probably need a gym or somewhere you can get rid of the frustrations that have come your way recently. Big hugs for a GOOD day for You and Sweet Kaeden

+ Read More
Linda Mumford Harman
35 months ago

Gwen, you don't know me, but when I read your frustrations with the staff at the hospital, it brought back memories of the same frustrations that we went through with our daughter back in the '60's and '70's. So as a mother who knows exactly what you are going thru, I want to tell you that "this too will pass". Please rest in the knowledge that all of your lives WILL go back to normal again. Please try to rest whenever possible so that your thoughts and body can stay strong. I, too, wish that we could make a tape recording to give to anyone who asks the same questions day after day - I just had to keep telling myself "they're just doing their job because they have NO IDEA what to do and don't want to admit it." We all need a Dr. House!! Remember you are NOT alone - if I could take your place, I would...............a very caring friend, Linda H.

+ Read More
Jennifer Gooler Kerns
35 months ago

Sweet sweet strong girl! We love you and here praying for you every minute of each day. Xxoo The Kerns Gang!

+ Read More
Sally Walker Roberts
36 months ago

I am in awe of Kaeden and her strength and determination! To see a photo of her with such a beautiful smile is amazing. Keeping you all in my prayers.

+ Read More
Gwendolyn Hickey Babcock
36 months ago

Emily, thank you. I can't tell you how much your words mean to me and my family. All I can think of is the team and getting back to you. And I promise you, I'll be back. This is just a small bump in the road of life. See you on deck!

+ Read More
Emily Urbaniak
36 months ago

Kaeden, you're in my prayers. You're a strong girl and we all know you can do this. Coach Gwen, stay strong! Keep your head up and stay strong for your little girl! We all love you both and we support you! We are always going to be here for you, as a family and as a team. We are showering your family with our thoughts and prayers. Get well soon!

+ Read More
Gwendolyn Babcock
36 months ago

LuAnn, the address is Kaeden Babcock Kennedy Krieger Institute 70 North Broadway Room 314 Baltimore MD 21205

+ Read More
LuAnn Hunt
36 months ago

Gwen, can you provide the address again for cards? I know you posted it earlier, but I'm not sure where to look. My prayers continue for you all!

+ Read More
Gwendolyn Babcock
36 months ago

Deb, thank you for asking. Yes that is fine. I appreciated that you asked.

+ Read More
Deb Bissoli
36 months ago

Gwen your family will be in my prayers. Could I share this info on my FB page to help?

+ Read More

$11,240 of $1 goal

Raised by 133 people in 36 months
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JM
$300
Juliann Mummert
29 months ago

My heart has a special beat for you all.

$100
Anonymous
30 months ago
TS
$10
Todd Snyder
30 months ago

Thought and prayers to you and your family. If there is anything I might be able to do for you...please ask

$10
Anonymous
30 months ago
JK
$25
Jack/Gail Kilgore
32 months ago

Prayers and please keep us posted.

Bonnie Kestner
34 months ago
1
1

Dear Father, I bring Kaeden and Gwen to Your throne of grace. Have mercy on them—they have been through so much. I pray fervently for healing, hope, encouragement, and for Your peace that passes understanding. Give them good sleep, wisdom, direction and strength for the next part of their journey. Help them to feel your loving presence with them every step of the way. Thank You for drawing them closer to you and for the love and compassion they have shown toward others. Bless them abundantly, dear Lord, and touch Kaeden with Your healing hand. I pray all of this in the strong name of Jesus. AMEN.

+ Read More
Connie Manchester
4 months ago

I continue to pray for your family! Especially, for Kaeden! Of course her hormones are guiding her mental health! It’s well known in many circles!

+ Read More
Lona Terrell Kluttz
32 months ago

Praying with you and for you. Love you all. ❤️

+ Read More
LuAnn Hunt
35 months ago

I look forward to your updates everyday. You and your daughter are an inspiration to me. I thank God for you and your story.

+ Read More
Marilyn May Miller Karr
35 months ago

i'll be back in baltimore after thursday of next week. glennell gave me your name. i'll be around to take you out to dinner and to spend time with you in the evening hours to listen. send me a message on fb and i'll give you my phone number, and i'll help take care of you so you can do everything you need to do for your daughter.

+ Read More
Sheila Mercado
35 months ago

Hi, you don't know me but I am a friend of one of your former Sweet Briar classmates. She told me about your daughter and said you need prayers. I happen to be a member of a church that fully believes in the power of prayer. Your precious child is on our prayer chain and I am asked, almost daily, how she and your family are doing. Several people have asked if she can receive cards and if so, where should we send them? We do not know Kaeden but she is a child of God which makes her a part of our family. We will continue to pray for her until God's healing hands touch her and she's back home with you and your family, happy and healthy. May God continue to bless you all.

+ Read More
Jennifer Gooler Kerns
35 months ago

Thank you for having the strength to update us. We forever pray for Kaedens health. I just wish I could trade spots with you for one day so that you could rest up. I love you my friend.

+ Read More
Jane Dellinger
35 months ago

I hope you had a good sleep. Gwen, try to take care of yourself. Do some yoga breathing or a simple meditation from time to time. You probably need a gym or somewhere you can get rid of the frustrations that have come your way recently. Big hugs for a GOOD day for You and Sweet Kaeden

+ Read More
Linda Mumford Harman
35 months ago

Gwen, you don't know me, but when I read your frustrations with the staff at the hospital, it brought back memories of the same frustrations that we went through with our daughter back in the '60's and '70's. So as a mother who knows exactly what you are going thru, I want to tell you that "this too will pass". Please rest in the knowledge that all of your lives WILL go back to normal again. Please try to rest whenever possible so that your thoughts and body can stay strong. I, too, wish that we could make a tape recording to give to anyone who asks the same questions day after day - I just had to keep telling myself "they're just doing their job because they have NO IDEA what to do and don't want to admit it." We all need a Dr. House!! Remember you are NOT alone - if I could take your place, I would...............a very caring friend, Linda H.

+ Read More
Jennifer Gooler Kerns
35 months ago

Sweet sweet strong girl! We love you and here praying for you every minute of each day. Xxoo The Kerns Gang!

+ Read More
Sally Walker Roberts
36 months ago

I am in awe of Kaeden and her strength and determination! To see a photo of her with such a beautiful smile is amazing. Keeping you all in my prayers.

+ Read More
Gwendolyn Hickey Babcock
36 months ago

Emily, thank you. I can't tell you how much your words mean to me and my family. All I can think of is the team and getting back to you. And I promise you, I'll be back. This is just a small bump in the road of life. See you on deck!

+ Read More
Emily Urbaniak
36 months ago

Kaeden, you're in my prayers. You're a strong girl and we all know you can do this. Coach Gwen, stay strong! Keep your head up and stay strong for your little girl! We all love you both and we support you! We are always going to be here for you, as a family and as a team. We are showering your family with our thoughts and prayers. Get well soon!

+ Read More
Gwendolyn Babcock
36 months ago

LuAnn, the address is Kaeden Babcock Kennedy Krieger Institute 70 North Broadway Room 314 Baltimore MD 21205

+ Read More
LuAnn Hunt
36 months ago

Gwen, can you provide the address again for cards? I know you posted it earlier, but I'm not sure where to look. My prayers continue for you all!

+ Read More
Gwendolyn Babcock
36 months ago

Deb, thank you for asking. Yes that is fine. I appreciated that you asked.

+ Read More
Deb Bissoli
36 months ago

Gwen your family will be in my prayers. Could I share this info on my FB page to help?

+ Read More
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