Approaching 1 Year No Seizures!!!!

Happy Holidays!!

Hello all, sorry we have been gone for so long!

I wanted to give a quick up date, I will have a lot more to say after we see the neurologist. But we are doing great!

Bradley is approaching 1 year seizure free, and as of December 31st we will have 1 whole year under our belt! Man it has been a long year full of ups and downs, but we made it!

Bradley just recently started therapy and he has had 4 sessions so far, we are working on his speech and his walking. He is 18 months now and we are trying to get him up on his feet and moving. He will stand, and walk with assistance but he just wont let go and walk on his own. Every now and then he will get a wild hair and take about 3 or 4 steps on his own but primarily he sticks to crawling. Bradley's speech is coming along, he has just within the past week started repeating words, but the therapist thinks that he is picking things up nicely, we just need to be patient and give it 110%. Everything we do is an opportunity to develop skills and to get him back on track.

Our next Neurologist appointment is scheduled for January 7th, we will be doing a full EEG readout, as well as blood work, and our favorite part, seeing Dr. Sara. As for his medicine, we are still on the B6 and Topamax, as far as I know we are still looking to start taking him off on when he turns 2 and if he stay seizure free. 

I will have much more to say with the next post. Please don't hesitate to send me an email, I love reading the stories, and I will always be an open book about Bradley and our experience!!

- Carrie

mead.carriee@gmail.com

We are 1 now !!!

Happy 1st Birthday Bradley!!!

Hello all, I am sorry for the gap in between posts but we have been so busy!! Bradley has not had a seizure since December 31st, 2012 and we have had clear EEG's since January 9, 2013. What a first half of the year this has been, Bradley is catching up with his skills, he is crawling on his hands and knees, crawling up the stairs, and he is even starting to walk while holding onto things.

Bradley is also experimenting with speech, rambling on about things that only he knows, but he will occasionally say Mama and Dada.

As for his medicine: We are holding strong with his vitamin B6 50mg 2x a day, and Topamax Sprinkles 2x a day. We are still on track to start taking him off of them when he is 2.

We are all smiles here!!!

Looking back on everything, it is so crazy to see where we are now! This is what we hoped for, this is what we spent countless hours, and sleepless nights, dreaming and praying for. We are blessed, truly blessed to have such a happy healthy baby boy. I will have an update soon, we have an appointment with Dr. Sara coming up. We are excited to see what she says!



3/1/2013 Update

Hello All !! We have a lot to smile about.. Just look at the big one on Bradley's face!!



I do not want to make anyone wait until the end to get the good news..
we have not had a spasm since 12/31/2012 .. That right 2 whole months!!!!! 

1/10/13:

We have started to lower the steroids. Bradley was on 5ml 2 times a day. We are to lower them .5ml every week (we do it on Thursdays) until he is off of them completely. Dr. Sara wants to take it slow and steady, and we are hopeful that taking this approach the EEG will stay normal.

3/1/13:

Bradley is now down to 1.0ml and he is doing great! He has regained almost all of his skills back, rolling over, sitting up, smiling, laughing, cooing.. the list goes on and on. I am so proud of how far Bradley has come.

Bradley sitting up by himself !!!

The steroids did have some side effects the most obvious one, is his weight gain. The Doctors say this is typical of the steroids and once he is off of them he will start to drop the weight. The down fall, he has is going to be delayed a bit longer when it comes to crawling and standing up for long periods of time. That is ok with us though!

 The most recent EEG that we did on 2/25/2013 was still normal. Dr. Sara said that she is very hopeful, for a "normal" future. At this pace we are going to catch up to where he should be ((I know all babies are different)) but we are going to be a little closer in development then where we are now. If all goes well between now and April 4th when we see her again we will not need to do another EEG!!!

2/25/13 Bradley sleeping through the EEG. He is such a good patient!

He lets them hook him up, then off to sleep he goes.

((the transition stage between awake and asleep is apparently the most important))

Practicing our fine motor skills!

Mommy finally let go!! Bradley standing up !!

Good news all around. We appreciate all of the love, thoughts and prayers that have been sent and are still being sent our way. Bradley is such a fighter and we are going to continue this journey one step at a time. Everyday we discover new things, we will continue to work hard and we will continue to move forward from this scary diagnosis.





Our Story

Hello,

My name is Carrie and I was blessed on June 12, 2012 with a beautiful baby boy weighing 6 pounds 15 ounces. I 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 to reach parents, siblings, aunts, uncles, friends, or just people who are curious about this rare condition and give them another side of the story.
I have come to the realization that when you are handed a diagnosis like this your whole life will shift. I will never forget the day that our doctor walked into the hospital room where we had already been for 48 hours with big medical books and charts in her hands. She sat down with a look of sadness in her eyes and explained to us that Bradley has West Syndrome, also known as Infantile Spasms. 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 internet 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 best friend searched the internet tirelessly for hours and finally found 1 story out of hundreds that had some kind of hope attached to it. I clung onto that little boys story and prayed like I had never prayed before in my life. Please God, help my son. My goal with this blog is to give you our story, show you our journey, and hopefully answer any questions that you may have. *** ((2019 update - Please keep in mind that this journey started in 2012 and medicine has advanced so far since Bradley's initial diagnosis, this is what worked for us then. *** ))

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 come across my page will see.

This is our journey with Infantile Spasms. What a set of crazy words. It still hits me like train; "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 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 alone. There are good outcomes.

Let me introduce you to Bradley Ryan..

Here is my 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! 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 he was having a seizure, however, I knew that this wasn't "a typical one". Everything that I had every seen or heard about seizure were common ones, body would tighten and shake 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. We immediately when to the ER.

The Doctor in the ER 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 visit was the longest 3 days of our lives.  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. 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. 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 or flirting with people anymore. We agreed to up the Topamax, and Prednisolone and 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.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.

Infantile Spasms, You are a scary diagnosis. You have taken our very normal and perfect lives and turned them 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.

Bradley today! Love the Smiles !!