Thursday, January 10, 2013

Our Story

Hello,

My name is Carrie and I am married to a wonderful husband, Brad. We were blessed on June 12, 2012 with a beautiful baby boy weighing 6 pounds 15 ounces. We named him Bradley. Bradley was born at 34 weeks, and besides having jaundice he was a healthy and happy baby boy.

This is where I will fast forward, and bring to you why I have started this page. Bradley was diagnosed just before he turned 6 months old with Infantile Spasms. My intentions with this blog is not to get pity, or to have people feel sorry for our family.
I have come to the realization that when you are handed a diagnosis like this your whole life will shift. What do I do now, and like other parents out there I wanted to turn to the Internet. What are spasms? Why did my child get these? What do I do about it? The search results are horrible, the outcome is grim, and frankly I was pissed that no one had anything nice to say about this ugly diagnosis. My goal is that out of all of the searches that are done over the first 48 hours after receiving a diagnosis like this. Hopefully this is page that will turn up.

There is hope.

There is a loving and beautiful baby in there, you have not lost them, they have a fire in their brain and we need to put it out... and that is what I am hoping that the people who do come across my page will see.

This is our journey with Infantile Spasms. What a set of crazy words. It still hits me like a ton of bricks; "Your son has been diagnosed with Infantile Spasms". Through the rest of this blog I will take you on a journey of what we went through. I do know that not every child is the same and every diagnosis and treatment is different. I am not a doctor, I can not guarantee your child will have these same results. The point of sharing Bradley's story is to let parents out there, who have this same scary, nightmarish diagnosis know that they are not a lone. There are good outcomes.

Let me introduce you to Bradley Ryan..


Here is our Bradley Boy. In this photo he is 5 1/2 months old. This is the first time that he was sitting up by himself ! This is also right before he was diagnosed with Infantile Spasms.

12/8/2012:

Bradley was set to get is very first haircut today! He has long beautiful locks of hair, and my husband and I , although dreading it, agreed he needed a haircut.Our poor baby boy was starting to look more like a baby girl! We were getting ready to head out and he started to have this weird "hiccup" he would suck in air, straighten his arms, and throw them up over his head.

This would go on for about 3 minutes, and then he would go about his normal activities. I thought that this was a seizure, however I knew that this wasn't "a typical" one because everything that I have seen and heard about seizures, the body will tighten, eyes roll in the back of the head, and the person is usually not able to be distracted out of it. Bradley did not have the "hiccup" again that day.


12/9/2012

 I was getting Bradley ready for and outing with our family. While changing him he started to do a his "hiccups" again. This time I'm sure that this is not normal. I record it with my phone.

On our way to pick up my family for breakfast Bradley has another one in the car, not even 20 minutes after the first one. We get into my parents drive way, I go into the back seat to get Bradley out of the car seat, and he is so upset he is having a hard time catching his breath. Off to the ER we go.

The ER Doctor saw one of these "hiccups" and assured me this is not a seizure, they said Bradley is too alert and his heart rate is not dropping, He is tracking things, his eyes are not dilating.. they tell us it is reflux and discharge us to follow up with our
primary Doctor.

12/10/12

We took Bradley to his primary Doctor. I showed him the video that I had taken of Bradley. At this time now Bradley has had about 2 that morning alone, even one in the Doctor's office while we were waiting to see him. The spasms now were up to about 20 minutes in duration with maybe 15-20 spasms in that time frame. Bradley would now get very upset and cry throughout the spasm and even cry for 20-30 minutes after having them. Our Dr. told us that we should admit him to the hospital, because he thinks that he is having seizures. The Hospital?!?! I though to myself "that is for sick children my baby just has the hiccups".

This is my husband with the baby right as we got to the hospital, I remember asking him if the baby really has to sleep in the crib. Our baby isn't sick.

The hospital visit was the longest 3 days of our lives. The baby was tired of being messed with. Brad and I were living off of coffee and sleep was non existent. They started right away with testing.. Blood tests, urine, and EKG. Ordered for the next day, an MRI and an EEG.

Our little Bradley Boy watching some TV.
 
Bradley catching up on some ZZzz's
 
12/11/12:
 
The MRI was done and everything came back normal. We got to meet our Neurologist for the first time, Dr. Sara. She came in and looked over him and said that he looks very good. The MRI looks great and we have one more test, the EEG,  that needed to be done before we can determine if he is having seizures or not. She told us that he will be hooked up all night and if he is having seizure then we will be able to capture them and we will also be able to tell what he is doing before and after them by the video monitor. The EEG people came in and hooked Bradley up that night. And we waited.
 

Bradley Boy Hooked up to the EEG machine.
 
12/12/12:
 
Bradley is 6 Months today!!
 
Dr. Sara came in first thing in the morning and she said that she wanted to do a test on Bradley, a test for tuberous sclerosis. She takes out her UV light scans his body, and after a careful once over .. she tells us that he does not have it. Dr. Sara then told us the news, Bradley does have Infantile Spasms. (still chokes me up) The way that they were so sure was his EEG she explained to me that his EEG was showing signs of Hypsarrhythmia (chaotic brain waves), which confirms the diagnosis.
 
 
She said that she does not think he has had it for too long and we need to be really aggressive with treatment to get this taken care of. Dr. Sara described his brain as having a fire in it, and we need to get the fire out as soon as possible. She explained to me that there are a few treatment options for him. There is the Adrenocorticotropic hormone (ACTH), there is Vigabatrin .. and there is the treatment that she chose for Bradley:
-Vitamin B6
-Topamax
-Prednisolone
 
 
Dr. Sara told us that this has worked with other patients however it might take a little bit to get the dosage correct. We will start at the bottom and if that doesn't work we will start increasing the Topamax and Prednisolone .... if that did not work then we would switch to the ACTH and see if we can get it pressed out then. Dr. Sara also let us know that if we can not get this under control at her Office we can go to one out of town that specializes in Infantile Spasms. We gave Bradley his first round of medicine in the hospital, we had to go get the B6 from the local vitamin store and we were told to get a log and start recording his seizures.
 
The first night home. My mom was there also my brother, my mother and father in law, Brad and the baby. I felt like I couldn't breathe. I was waiting for a seizure what an ugly word. I never thought it would be apart of my daily vocabulary.
 
Sure enough he had one. And another. And another.
 
We recorded them in a small notebook and at the end of the night I would transfer them into a larger book. 







 
I started to realize that we needed to keep count of the number of spasms that he has had. To get a better idea of what is going on in the minutes that he is having the Spasms.
 
 
12/18/12:
 
We had another meeting with Dr. Sara .. Bradley's development has really slowed down. Bradley was sleeping a lot due to the new medicine making him very tired. He had digressed a lot. He is no longer sitting up by himself. He is not making eye contact nor is he smiling, laughing and flirting with people anymore. We agreed to up the Topamax, and Prednisolone. We scheduled and EEG for next appointment and we went home to continue logging his progress.
 
 I started to get even more specific on the log. The spasms were getting smaller and smaller, and to the point where we really had to look for them. Also I started writing down a few milestones, his first smile, his first giggle. These were things that we missed so much and longed for. I only felt that it would be appropriate to have some Happy Notes in there too!
 
12/27/12:
 
Today we had and appointment with Dr. Dave, her partner, because Dr. Sara was out of town. Dr. Dave monitored his EEG today and let us know that he is making very good progress.
 

This is his EEG starting to "Normalize"
 
We are going to keep him on the same dosage and we will have a Follow up EEG in two weeks. The Seizure log is looking pretty good if I can say so!! We have greatly reduced the spasms, and we are feeling very hopeful that they will go away very soon...
 
Bradley was pretty use to this by now. He was actually smiling through some of the test.The object for them is to get the baby to sleep that is when they can capture his brain waves scattered. Good thing Bradley is good at Napping!! He had no trouble snoozing through the test.
 
Seizure log 12/29/12
 
 
01/01/2013:
 
Happy New Year!!! We haven't had a spasm this year .. I hope it stays that way!!
 
 
01/09/13:
 
Appointment with Dr. Sara,we also had an EEG today, and we have received great news.. THE EEG IS NORMAL!!!! .. **tears still flowing** God is Good!
 
 
So what now?? Well we start taking Bradley off of his steroids. Slowly we will reduce them and pray the EEG stays Normal. We will have to monitor him very closely, it almost feels like the first night we took him home after the diagnosis. Watching. Waiting. At any sign of a spasm or his skills starting to fade. We are to call the Doctor right way.
 
Bradley has Gained most of the lost skills back, he is sitting up, rolling over, and now trying to crawl.. he is SMILING, and Laughing!! Bradley is not 100% yet, but I am not really comfortable saying that. I have to judge what he is based upon where he has come from. Honestly our sweet little now 7 month old has been through Hell and back, he has felt things and experienced things that any grown adult would be fearful of. With that in mind I think he is doing Damn Good ..
 
Infantile Spasms. You are a scary diagnosis. You have taken our very normal and perfect lives and turned it upside down. Our little boy is better than he has ever been. He is strong, and smart, and still as cute as can be! We will move forward stronger than ever.
 
I know that our journey with this is not over yet.
 
Dr. Sara has given us a plan to keep him on medicine through his 2nd birthday. I am ok with that.To me that is just means one more person there celebrating his birthday with us!
 
Bradley today! Love the Smiles !!


11 comments:

  1. Baby Bradley, what amazing parents you have :) love to all of you and I hope to keep seeing smily faces on your journal ;)

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  2. What an amazing story! All of those prayer warriors out there praying for Bradley are all God's firefighters proving that God can put out any fire! I'm so happy to hear & see that little man is smiling again! Stay strong & we'll continue to pray for him & y'all!!
    Love,
    The Hessons

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  3. Carrie as much as im sad to read your story im glad you shared it. It made me cry. Thank you for sharing. Im so sorry you and your family went through this. Bradley your story touched me :') be strong sweetheart you have wonderful parents that will do anything for you. You are an angel and i hope one day I get the chance to meet you.

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  4. My son was diagnosed with IS on 12/10/12. Thanks for posting.

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  5. How are you doing? How is your boy? We finally got a clean Eeg. Our story is similar to yours except our son, Baltazar was put on Acth. Thought I would check in.

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    1. We are doing great! Bradley took to the first line of treatment, he is almost off of his steroids, we are keeping him on the topomax and the b6 for now. I am so happy to hear that Baltazar is doing great!! please keep us updated on his progress. My email is peacock.carriee@gmail.com . How is he doing off of the ACTH?? Is he also spasm free ?!

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    2. Hi Carrie

      My name is Bernie. Im soooo happy to hear Bradley is doing better! My daughter was diagnosed with IS on 06/25/2012. Reading your story, i felt like it was me. I did rhe exact same things!!!! She is on prednisolone, B5, Keppra and clonazapam ! I know so many! She is asl oon xzantac because they make her tummy upset. Its been ALMOST 4 WEEKS still has a very tiny spasms here and there. She used to hve 2-3 a day! Tey just increased her steroids to 4.5 mls. Her next eeg is next week!I was so sad to read about infantile spasms and the outcome. i pray my Emma makes a quick recovery just like Bradley =)

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    3. Hi Bernie!! Thank you for reading our blog! It was our goal to get the message out to as many people that we can! I am praying for Emma, and we will keep her in our thoughts, and hope for a speedy recovery! Please keep me updated! Here is my Email, Peacock.carriee@gmail.com , I know that this is a scary thing and it is a horrible thing to hear but there is hope!!! I hope to hear from you soon!

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  6. Hi Carrie

    Your story is inspirational. Our beautiful daughter Sofie was diagnosed with IS two days ago. The EEG showed hypsarrhythmia. That was the worst day of my life. Stories like yours have been inspirational. I will probably elect to do ACTH but will also do B6. Our pediatric neurologist started her on Keppra until we get a longer EEG (8 hr) and an MRI. I pray we too can have a positive outcome like yours.

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  7. Hello Carrie, thanks for sharing your testimony. I needed to hear something posting from infantile spams.

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