Holidays 2014

Wow!!! We have been celebrating the birth of Jesus for a week now. How incredibly blessed we are to be loved by our Savior. His love has brought me through the toughest times of my life.

Merry Christmas to you all!! Do you have any family traditions? We really haven't started any with Ayden. My mom always gets me, my sister, and our families pajamas that we open on Christmas Eve. The more places people have to go the crazier and less consistent traditions seem to get. I must say the Lord blessed us this year with Ayden's health. As you know seizures are very unpredictable. Ayden was sick with a little cold the week before, but he made a speedy recovery in time for Santa and his many surprises.

Ayden doesn't really get to play with other kids because of the stimulation to his brain. This past week he has been able to play with all of his cousins!! It can bring tears to my eyes just thinking back at how excited he gets when he gets to play with other kids. He is such a loving little boy. He does tend to pinch sometimes.. All kids do right? =/ He sure made my Christmas extra special. We did alot of running around. Not near as much as most, but alot for Ayden. He adjusted very well.

Oh!! About the presents. He loved could care less if he received one gift. As he was in the middle of opening his presents Christmas morning. He stood up and walked over to his books and grabbed one he has had since he was 6 months old. No matter what his reaction was and is in the future it is perfect. We are writing our own story and each day with Ayden is special. Each day seizure free is an extreme blessing for this momma and everyone that loves Ayden.

As Ayden was playing with his cousins I noticed him saying several new words. This makes me so happy. I want him to be able to communicate his needs and wants with me so bad. I'm praying the he will be well enough soon to attend some sort of daycare with other kids a couple days a week.

Cranial Sacral Chiropractor

Okay, Ayden is still in his 3 month seizure cycle (June 1, 2014). We have changed his diet, began chiropractic care, followed our neurologist orders on medication, and I am at my end. I feel I have been at my "end" many times. I looked into the Carrick Brain Institute in Texas. Dr. Ted Carrick is a chiropractic neurologist that has helped many people with brain injuries. He also has helped many children with epilepsy. It is a private institution so insurance would not pay. I spoke with the center several times about the care Ayden would need and treatment plans. I was ready!!! The cost was going to be $11,000 dollars because Ayden would need to be seen daily for 10 days. There was also a consultation fee. If you have ever had a sick child you know money is no object. I would live in a tent if I had to to be able to provide him with excellent care. This course of treatment is very rigorous. He would have to do alot of different activities to stimulate different areas of the brain until they found what specific activity would "trick" Ayden's brain to not go into seizure mode. Once the brain begins misfiring it is a second nature. If life gets stressful, overtired, overstimulated, sick, etc. it will automatically go into "fight or flight" mode and begin misfiring. I will also link a you tube video of Dr. Carrick at the bottom of this post. So we made the appointment. We were scheduled for our first consultation on June 12, 2014. We would need to fly out or drive which was up in the air. I have always been afraid to fly with Ayden because the change in pressure on his brain. If you have experience flying with epilepsy please comment or email me your experience.

I had a sweet friend (Crystal) start a special account for Ayden and his expenses. She shared this information on facebook. Another sweet friend (Dana) from my hometown that had moved away 10 years ago read the post. She emailed my right away. We began chatting and she told me several things she thought could be helpful to Ayden. She recommended trying essential oils (young living) and "her" chiropractor. She could not say enough about him. I was not ready to try another chiropractor. I loved my sweet Jessica. She had been a wonderful Dr., friend, and support system for me. I was interested in the essential oils. Dana did not want me to make such a huge investment without giving the essential oils and Kurt (her chiro) a try. I was dead set that we were going to Texas. Support me or not this is all I know to do. I met Dana one day in Little Rock and she gave me some frankincense (EO). Ayden was still having seizures pretty bad. It was one of those day/nights that I wanted to pull my hair out and praying  to God to please please take these away today!!! I called Kurt and he talked to me about Ayden. He had experience with myoclonic seizures. What?? Most people have never heard of them. He has seen patients with them. I'm pretty sure this is what "sold" me. My husband and I drove Ayden to Hot Springs the next day. That is where Kurt is located. He also has a clinic in Little Rock that he sees patients at in the evenings. Kurt is a Cranial Sacral Chiropractor. He works on the cranium as well as the spine.

Kurt examined Ayden (June 6, 2014) and said his head was very "tight". He felt he could help him. Ayden did great. He even sticks his finger in his mouth and presses on the roof of his mouth. It releases the back of the neck. This keeps him from having to do much "popping". So this day began our journey with Kurt. Kurt called the next day to check on Ayden. This impressed me. Dr. Jessica was the same way. They give you an open line of communication. This means a lot to a spastic mom worrying non stop about her baby. We are still seeing Kurt today. Ayden went from having about 40 seizures a day to 10 within a few adjustments. He agreed to keep Ayden on the diet. He said that there are three parts to a healthy life. Chemical (foods), Physical (Brain-spine, nerves. - adjustments), and Emotional (love and support from his family). So with all of this being said I will say that chiropractic care has definitely helped Ayden in a positive way. (NOTE-both chiropractors that we have used are both very open about prayer and God- I LOVE THIS!!) God created our bodies to heal themselves if we give them proper care and nutrition.

I canceled our trip to Texas and at this point I still feel like that was a good decision.

Have you looked into chiropractic care or a specific kind of chiropractic care? I recommend you doing so!!
Stay tuned for a post on Essential Oils..


https://www.youtube.com/watch?v=VP-Fe1Tk2Pg&noredirect=1

Diet Changes

In February when we began chiropractic care Dr. Jessica advised me to look into changing Ayden's diet. There are many different diet's out there that have had a positive effect on epileptic children. The most common is the ketogenic diet. The keto diet must be administered under a doctor's care. Dr. Sharp (Ayden's Neuro) has never mentioned this step for us. You can find more information about the keto diet here http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet.

Dr. Jessica advised us to follow a very clean diet for Ayden. She advised us to follow the paleo diet. You can find information about the paleo diet here http://thepaleodiet.com/epilepsy-gluten-free-diets/. It was a huge change for us. Ayden has always ate good. His breakfast menu looked like this:

Eggs, sausage, and applesauce
Oatmeal, toast, and banana
Pancake, sausage, and peaches

From the moment I knew I was going to be a SAHM I could not wait to cook and eat breakfast with Ayden at the table every morning. I have always tried to make sure he ate a good healthy breakfast. I never let him eat sweets, cake, or anything like that. I thought I was doing good. His lunch and dinner was not as healthy. I admit that. He would have some of the following:

Ravioli
Spaghetti
TV dinners ( He loved the meat. I think because it was so tender.)
Lasagna
Creamed potatoes
Mac N Cheese
Green beans
Corn
Bread - any kind of bread

Snacks:
Cheerios
Gerber puffs

He always drank water and milk only. He still does to this day.

This diet was a pretty big change for me because I had to cook everything. He could/can not anything bought or prepackaged. I had to buy all fresh fruit, vegetables, and meat. I had to change from vegetable oil to olive oil and coconut oil. ( I don't think I could go back now!) We cut out all dairy so he started drinking almond milk and goat milk. Let me enlighten you on the price of goat milk. It is $4.30 for a quart. Yes!!! He can drink a quart in one day.

I started out making his applesauce. I did this for about 6 months. I have now started buying natural applesauce that has no added sugar or high fructose corn syrup. If you start reading labels you will realize everything has HFCS in it. It is crazy and my personal opinion is that there is no need. A really good piece of advice that I received is that if it doesn't expire for a long time then it's probably not healthy. This tells us that it is loaded with preservatives. Our bodies do not need anymore toxins than we are already exposed to daily. Children with health issues are at a higher risk of their bodies becoming overloaded. Now Ayden's diet consists of the following.

Breakfast:
Scrambled eggs cooked with coconut oil
Turkey Sausage
Im thinking about trying a gluten free oatmeal. I just have not done this yet.
Applesauce or banana

Lunch & Dinner
Grilled or Baked Chicken
Baked Turkey Breast
Grilled Turkey Burger
Roast
Baked or Grilled Pork
About any meat besides Ham. I have let him eat ham, It is just very salty.

Sides:
Sweet potato
Butternut Squash
Summer Squash
Green beans
Broccoli
Beans- They are not on the paleo diet so I only let him indulge every once in a while. Green beans are considered okay.
Carrots
Green peas

Snacks:
Any fruit he will he eat
unsalted peanuts
Blueberries
Fruit and Veggie Smoothies with milled flax seed

I feel like I am drawing a blank on all the foods he eats. Although the list is pretty small. If we go out to eat I usually have to prepare Ayden's food ahead of time and carry it with us. I was letting him eat a grilled chicken patty from Chick fil A. I would prefer not to do that any longer. They changed their patty back in the summer and now it has a seasoning on it. You can't just get it plain. It tastes like it has some type of Italian seasoning on it. Italian seasoning is a No for Ayden. I have tried many different things. At the time I changed Ayden's diet. I had not read anything about Italian seasoning being a trigger. I was really seasoning up his meats. It gave them a great flavor. I started using essential oils on Ayden this summer (seperate post). At the time I was researching different oils that could be useful and harmful for him I ran across many Italian herbs that can be seizure triggers. I immediately stopped using Italian seasoning. I did notice a pretty big drop in his seizure pattern.

If you decide to take this step for your child. I encourage you to do your research and know that you are doing the very best you know for your child. These diets are not easy or accepted in our super size society. We are the ones that have to change it one child at a time. If I can help you get started or answer some questions feel free to email me at  aydensfightagainstepilepsy@gmail.com.

God Bless

Ear Infection = Fever = Seizures

March 24, 2014    It was about 11pm and Ayden was crying after only about 2 hours of sleep. I was so tired and aggravated that he was already awake. I asked Justin to get up with him. I was just in such a deep state of tiredness. I normally jump right up, but not this time. He agreed to go in and take care of him. It wasn't long until he came and got me. He told me something was wrong. He just wasn't acting right. I immediately jumped up adrenaline pumping. He was right. Ayden had something going on besides being a fussy baby not wanting to sleep. I held him for  a while and nursed him. Nothing helped. He was so upset. He was very nervous. I could tell as I held him his body was going though some sort of shock. I gave him IB profen and cuddled him the best I could. About an hour later he had his first seizure. We knew it was coming. It's kind of like death. No matter how much you prepare you are never ready for that first jerk/seizure. My husband and I both knew he was sick. We just had to wait until the morning to get him to see a Dr. I texted my best friend and she gave me the number to her personal friend that is a pediatrician. We were able to get in right away. He had a double ear infection. We had to give him antibiotics which I hate. I feel like sometimes I do not have any other option because of the obstacles we face dealing with the seizures.

We are still going to the chiropractor 3 days a week. I have changed Ayden's diet. I will make a separate post about what all I changed. He is taking 75 mg zonegran a day and 6ml keppra daily. This cycle continued for a very long time. He was not seizure free for longer than 3 days until June 23, 2014. Yes, that is 3 months of seizures!!!!!! My baby has had many more days with seizures in his life than without. How sad is that??

I have had many ups and downs as a mommy. I can completely sympathize with anyone that takes care of a sick person especially their baby. The people that have never walked your shoes HAVE NO IDEA!!!!

May 5, 2014     We had our regular visit with our neurologist. I told him all about the diet, chiropractic care, and how Ayden was still having the seizures. He feels they are being controlled. I do not agree with this. He is still telling me that Ayden is on track developmentally which is a great sign that he will soon out grow them. As we all know to out grow them we must stop having seizures for a period of time. I am waiting on t
+/8hat period of time. He suggested that we get off the keppra and up the zonegran. So now we are to taper off the keppra slowly, and up zonegran to 50mg in the morning and 50mg at night. I'm not one for medicating Ayden with AED's because they have not stopped the seizures, but what if he was not on them. What would be going on? It's a really hard battle that I fight internally. I only want to do what is best for Ayden today, tomorrow, and in his future, I do not want to give him something at 1 that can adversely affect him at 6 or 16. This is a very hard part of my life and discussing my feeling with others. They are only thinking about now. Just give him the medicine. What are you thinking wanting to try other options besides modern medicine? I have researched just as you have if your child is going through this and we know alot more about adverse affects than they do. Follow your mommy gut if you're in this situation.

 MY ANGEL!!!!!!! MAY 2014 @ ACH NEUROLOGY

Feeling a little clumsy: Part 2

February 15, 2014       Ayden is having seizures about 10-12 an hour. I noticed that he had more when he was using his pincher fingers. If he tries to turn pages in a book or little things like that causes them. It's almost like he has electricity coming out of them. He was 9 months old before he could pick up anything with his pincher fingers. The Dr. told me that was normal. He has always had some sensory issues as well.

February 16, 2014      Ayden has had very few seizures today. He has been a very happy baby. These days are so few and far between. I am thanking God for my happy baby. It sure makes for a happy momma!! Ayden did not want to nap much.

February 17, 2014       We went to the chiropractor this morning and he was clear down to C5. It was out so she adjusted it as well as his back and his shoulder. His balance was off after the adjustment. I was worried, but all was well. He did pretty good on the ride home and was playful. He took a 2 hr nap and woke up happy. All started going down hill around 5pm. Ayden had about 3 seizures tonight.

February 18, 2014        Ayden woke up having a lot of small seizures. Everything he tried to touch with his hands would make him have one. It was like he had electricity in his little fingers. I also noticed that all he wanted to do was touch and pick at things. He really moved them a lot like he had never felt them before or something (strange). He was having around 4 a minute sometimes. I was able to get him down for a nap around 9 and when he woke up they were much better. He would just have a few every once in a while. He was able to play and walk. He slept last night from 8-4am. This is rare he wakes up multiple times a night. I asked Dr. Jessica about how he acted with his fingers. She said that they may have been numb due to the nerve ending. When she corrected a sublaxation blood was able to flow freely through them. She is so wonderful to answer me day and night!

February 19, 2014        Ayden is still having some small seizures. We went to the chiropractor today and his scans are looking really good. He is staying clear up top. She adjusted his upper back today. He napped when we got home and seizures became more prevalent about 5:30. He was still able to play. He had a couple of strong ones. =(

February 20, 2014       Ayden woke up pretty good. The seizures were still frequent but not severe. He took a small morning nap( 15min.) and when he woke up they were still about the same. He had diarrhea and would not eat. His teeth seem to be really bothering him. He was real fussy all day. He would not eat supper. He took a 2 hr nap.

February 21, 2014        Ayden woke up fussy again with teeth pain. His seizures are still about the same. We went to the chiropractor. His scans are looking really good. He was clear all the way to his T10 and T11. She adjusted that as well as his L3 and 4. He played well at the office. His balance is a little better than yesterday. He has never had good balance. The car ride was descent. I bought the probiotic and Vitamin D Dr. Jessica suggested today. We also discussed his vagus nerve. He does not have a gag reflex as of November. So we are anxious to see how it heals and if it starts functioning properly. (In case I forget to mention this later. He now has a gag reflex!! =))

February 22, 2014        Ayden woke up with a slight cold. He is still having diarrhea as well. His cold is runny nose, and cough. His balance is okay not the best. He is having some seizure activity, but not to where he can’t play. He has no appetite and his teeth are really bothering him.

February 23, 2014        Ayden is still sick with his little cold. His seizures are mainly blinking ones. Not too many. He felt really bad this morning and took a 2 hour nap. He played pretty good. We went to see Curtis (His pepaw) and he danced and played. His did not have diarrhea today, but he still will not eat.

February 24, 2014        We went to our chiropractor today and his scans were not too good. His left side was all out. I’m not sure if it is really a true reading because he was so fussy. He cried the whole time we were back there and the whole way home. It started at his C2-C5. She adjusted those. He just seemed to really feel bad today. He has not had a seizure that I noticed yet today, but I’m sure later today they will start up. That’s what happened last Monday.

February 25, 2014        Everything stayed calm. Ayden is doing great! Happy Healthy Baby = Happy Momma!!! 

This cycle lasted 16 days...

Feeling a little Clumsy: Part 1

January 1, 2014 has approached us and this is our year. A year that begins a seizure free life for Ayden. Our dreaded nightmare is over. I could have only hoped. Until...

February 7,2014          Ayden's balance was off from the start this morning. I noticed him falling when nothing was around to fall over. Once, I was watching him and it was like his feet just flew out from under him. I started getting that gut feeling something was going to happen. He would also shake his head and neck around like it felt weird. I noticed him beating at his ears like they itched. That night during bath time he had a strong myoclonic seizure. I grabbed him up in a towel screaming for Justin telling him he just had one. He seemed fine. I'm sure I shook him up more than anything. I put him back in the bath and finished bathing him. Right then I called Dr. Jessica and left her a message to call me back. She did right away. I was in complete "freak out" mode. She told me we would start care right away. Only one that day/night.

February 8, 2014        Ayden played pretty normal today. He had 4 seizures altogether today.

February 9, 2014         Ayden had 4-5 seizures during the day. We went to see Dr. Jessica (chiropractor) on a Sunday night. His C1 was a 7.9 on the scan. That is in the black which is pretty bad. She adjusted this sublaxation. He seemed a little irritated as she touched it. Once she adjusted him- he unclenched his hands immediately. Justin and I noticed it at the same time. They did start clenching again a little later. That was really neat to experience. He started having more seizures after we left.

February 10, 2014        We went back to chiropractor first thing this morning. Justin and I decided to stay in a hotel in LR so we would be close. He was having 10-12 an hour first thing that morning. It was so sad. If I remember correctly this was our first time in a hotel. He wanted to run down the halls and play, but he couldn't the seizures were so strong. I had to hold him. His scan was down to a 3.2 so she adjusted C1 again. He was pretty irritated all day. He was having them about 10-12 an hour. He did nap for 1 /2 hr when we got home.

February 11, 2014        This morning started strong with seizures. Mid- morning he played really good. Very  few seizures. He was so happy!!! He took a nap and once he woke up they became more frequent.

February 12, 2014         He had an absence seizure this morning as we were getting ready to go to chiropractor. This is the first time this has happened since May 2013. He had been having a pretty good morning up until this point. I was completely out of control. I just knew I had done this to my baby. I caused him to have a different type of seizure. I called the chiropractor crying. I asked her could he die? I was so upset. My grandmother and Dr. Jessica convinced me to go ahead and go in for the adjustment. His scans showed really good progress. C1 was clear and C2 was a 4. She Adjusted C2. Dr. Jessica told us how it would work its way out like a twisted rope. The sublaxation would move down the spine until the spine was clear.

February 13,2014        This morning A woke up with strong seizures. Myoclonic seizures are known to occur after waking. Our experience has not been the average case. Nothing in my little baby's life has been the "average" case. We usually experience a high volume of them throughout the entire day. Mid morning until early evening was good. He was able to play and be a happy little boy. This evening they intensified again. ( Note he takes his meds about 8am and 8pm daily)

February 14, 2014       Happy Valentine's Day!! So many things you want to experience with your little one and a day like today is not one you want in the baby book. His morning was pretty good only 3 or 4 seizures before visiting the chiropractor. In the car he had about 3 or 4. That's another thing Ayden has never liked is the car seat. We started making 3 trips a week to see our Chiropractor that is 130 miles from our home round trip. To watch him having seizures in the backseat through your rear view mirror is HORRIBLE!! His C1 still clear C2 clear and C3 was 8. Adjusted C3 and his back. She wanted to adjust his back so they could balance and work together. Very calm after leaving chiropractor. He napped for about 2.5 hrs. Once he woke up he had 10 or so an hour.YES, AN HOUR!!!  I did sneak a super cute picture of my Valentine.

Valentine's Day 2014

The first night of Chiropractic Care

Our wonderful Dr. Jessica

To Be Continued.........

Chiropractic Care for Babies: Have you lost your mind?

One night in the day and the life of Ayden's mom someone told me they thought they knew something that could help Ayden. What? Anything? I'm so ready to hear this.. Take him to a chiropractor... Ummm my little baby?? Yes, they knew of a pediatric chiropractor that they thought could help Ayden. They gave me her email. I decided to get some more information. It was a Sunday night. She returned my email that night and also offered to call me so we could talk. She called and gave me some great information. I did not understand a lot of it, but she was wonderful to send me data, links, and educational documents supporting her theory. My husband and I decided to take Ayden in for a consultation. We didn't tell anyone. I have always been very private about Ayden's health issues to an extent. No one would know anything until it was bad enough I wanted everyone to pray for him. Oh my goodness I'm not sure I could have made it without so many kind people stopping what they were doing to pray. They still are to this day!! =)))))

Consultation: We met in Dr. Jessica's office. She told us all about how the brain, spine, and nervous system are connected. She also told us that she believed all of this went hand in hand with the way his hands were always clenched, our horrific car seat rides, sleep issues, etc. She informed me of the important roles our food has on our brain and nervous system. Wow, How have I made it through life this far knowing so little about the human body. Dr. Jessica felt strongly that if Ayden had been adjusted from birth due to his traumatic birth things would be different. I agree with her. You know that feeling if only we could go back in time.. =/  If you have not ever looked into chiropractic care I suggest you do so today.

Exam: The chiropractor wanted to examine Ayden. She used a thermal scan to measure his temperature at each vertebrae. Ayden's C1 was out of alignment quite a bit. That is the cervical vertebrae that is connected with seizures. Am I convinced?? Not yet!!

We went home and I thought about this daily as I rocked my baby to sleep. I just couldn't do it. I couldn't risk something happening to him because of something I did to him. When you have never experienced the rewards of a healthier life due to chiropractic care you just can't understand. I know exactly how you feel. I felt the same way.

      Ayden @ Precision Chiropractic and Wellness December 2013


Check back to hear about Ayden's first adjustment.


For more information on how Chiropractic care can help you. Visit Dr. Jessica's website.
http://www.chiropracticlr.com/

Second Opinion @ Le Bonheur Children's Hospital

What do you do? What's the next step? Can anyone in the USA tell us more about seizures. Can someone find us that right medication? I am willing to travel anywhere to get answers and a seizure free life forever for Ayden.

I was referred to Le Bonheur by a friend. So we went there. It was about 2 hours from our house. So not too bad of a drive. Ayden is a terrible rider. He did excellent. I was so proud!! I can't tell you the Dr.'s name because I can't pronounce it, much less spell it. My sister went with us and that was nice. When you are going through so much emotionally sometimes you just need an extra set of hands and a driver to relax. She was great at both. The Dr. was really nice and he took his time with us. He examined Ayden and asked alot of questions. He felt his traumatic birth could have definitely played a role in the seizures as well as many other things. He said the medication ACH prescribed was exactly what he would have given him. He also wanted to do another dreaded EEG so he could have his own set of data. (Really- we have to put my child through the torture of being held down for another 15 minutes) Of course we stayed and had the test done. This time they wrapped him up like a burrito so he couldn't fight them. It was a great idea. The results from this EEG was normal activity for a healthy brain because he was not having seizures this day. If he is having seizures the brain waves will spike.

We went to Le Bonheur in late August 2013.

Strep throat and Myoclonics

November 13, 2013    Ayden was completely fine today. He was playing, laughing, walking around, and having a great time. My mom came over for a visit. He had been playing and then out of no where sat down in moms lap and had a seizure. She told me "he just jerked". I picked him up and I could tell he had a fever-103!!!! The seizures were getting very close together. He was screaming miserably. We went to the Dr. and and found out that he had strep throat. This was a good feeling because there was a cause for the fever and seizures we thought. I called the neurologist and he told me he should be better once antibiotic kicked in.

November 14-17, 2013 He ran a fever and continued to have seizures. We were not getting better at this point. 

November 18, 2013    I decided to take him to the hospital. I did not know any other option. Went to ACH and was admitted for a 24 hr EEG. At this point I felt that was useless. I knew he was having myoclonic seizures. They had not changed. The results confirmed my theory. They actually only left the wires hooked up to him for about three hours because he had so many. The Dr. had us up the  zonegran to 75mg a day. 25mg morning and 50mg at night along with 6ml keppra daily. We stayed that night and was released the next day. So we have had a spinal tap, MRI, multiple EEG's and there is no cause for the seizures. They have told us that he will most likely grow out of them because he is developing normal. He does not seem to have any cognitive delay which is a big factor in an underlying issue. They cannot tell me by what age or any other information. I was also told during this stay that if these two medications did not work that it was likely the other AED's will not. (Great news, right?) He also told me to think about a VNS- vagal nerve stimulator, ketatonic diet, etc. in case it was needed in the future. He was falling constantly from the jerks at this point and they suggested a helmet where only his eyes would show to keep him safe. I wanted to protect him, but that sounded so sad. Luckily, we never had to wear one of those.  

November 19, 2013    Discharged

November 20-30, 2013 Seizures continued. They would lessen in amount each day. 

December 1, 2013       Seizure free

(Thanksgiving 2013)

The Good Times- Ayden's 1st Birthday

This blog is dedicated to sharing our story. There are more parts to it than just those moments of complete terror when Ayden is going through a seizure cycle. There are good times as well. Ayden was seizure free from August 13, 2013-November 13, 2013. That was the longest time we had a break from these vicious monsters. (Medications he was taking- Keppra 3ml 2x a day, Zonegran-25mg at night.) During this time Ayden celebrated his first birthday!!! My baby boy was born on October 1st. We celebrated on September 27th with a western themed party. We had a great time! When you have a sick baby you wonder if you will ever get to experience these simple HUGE milestones. Ayden was not a happy little baby from birth. He did not really like crowds, and noises seemed to really bother him. When we were all singing happy birthday to him he did not like everyone looking at him. I think this all goes back to his birth and the entire first year of his life with his nervous system. I will post about that another time. After his party everyone left except my immediate family. We played with the kids outside and they all seemed to have fun. I have some cute pictures to prove it!!!

Ayden was not walking yet, but he could crawl anywhere he wanted to go. When he would go through a seizure cycle he would have set backs. If he had been crawling and was not able to due to the fact I had to hold him constantly his little body would be too weak. He would have to regain that strength. :( During this three month cycle I was one happy momma. I just knew our nightmare was over and prayers had been answered.

After Ayden turned one we went for his one year check up. We used Dr. Choate in NLR. He was fabulous and he was the first one to see Ayden after being born at four days old. He knew how tough of a birth Ayden had been through. So here we are in this office and Ayden has been vaccinated until this point. (Note- he had his first myoclonic seizure two weeks after having his six month shots.) I'm really nervous about what I need to do. I'm alone in this office. Dr. Choate told me that it was very unlikely these vaccines would cause him to seize. He also recommended the flu vaccine. I trusted him so I went along with it. This was my mistake. I had not informed myself on what was in these vaccines, how many they wanted to give him, statistics on children with seizures, research on how it affects the nervous system. Nothing!! I can beat myself up all day about that, but the fact is that I gave them to him and I cant take it back. A couple days later his legs had huge knots in them. (To be expected right?) They stayed there for about a month. They were HUGE!! Exactly ten days after receiving the vaccines he spiked a high fever. It was 102.5 I believe. He was miserable. He cried constantly. All those toxins were completely in his system at this time. (that's what the DR told me anyway) Yep, you guessed it a few days later was November 13th when this vicious cycle started all over again. I'm not saying it was due to the vaccines because I have no idea. I just know if I could take back that day I would not have vaccinated him. He did get sick on November 13th with an illness that was most likely the main trigger for the November 13th cycle as well that I will discuss in the next post.  His nervous system was already in complete fight mode when the illness came on due to being filled with toxins from the vaccines. Check out these pictures of my sweet boy!!

(Dad, Mom, and Ayden)

BACK TO ARKANSAS CHILDREN S HOSPITAL WE GO

August 3, 2013 Around 4:15 in the afternoon Ayden began jerking again. We were at my grandmothers house. I had a weird feeling about going. I had that mother's intuition that he was going to start having seizures. I wanted to believe that was not the case. I had told my grandmother we would come visit so we did. He was in the living room and I thought I saw one. In denial I did not say a word. A little later I saw another. Still not saying a word I packed him and all his things up and we headed home. Something I have always done when he starts having seizures. I just need to be home and sometimes alone. My grandmother didn't understand at the time and could not comprehend what was going on. I, as his mother knew exactly what it was. He had around 10-15 that day.

Aug  4, 2013     The jerking is still going on around 10-15 an hour. Yes 10-15 an HOUR!!!! 

Aug 5,2013     I email Dr. Sharp and he sends us to ACH to be admitted for 24 hour EEG.I told him that I needed to know if these "jerks" were seizures which indicates irregular brain activity or just "jerks". The EEG indicated the jerks are myoclonic seizures. Dr.Kenneth Habetz was holding him when he had one. He told me immediately that they were myoclonic seizures without looking at the EEG. They released us because they caught what they needed to see. They increased Keppra to 3ml 2x a day. He had so many "jerks" we were released within three hours. 

Aug 6,2013     The seizures are still happening quite frequent. They seem to get worse when he gets on hands and knees to crawl. Around 3:00pm they are increasing in  severity and amount. By 4:30-5:00pm he is having multiple ones per minute. He is having them almost non stop- about every 5 seconds. I call the on call Neurorologist and speak with Dr. Sharp (luckily) he advises us to come in through ER. They seem to slack up after I gave him Keppra at 5:30 (3ml). We waited out the night. I figured we would all rest better at home than in the hospital.

Aug 7, 2013     Ayden woke up having the seizures about 10-15 an hour. I called Dr. Sharp again and we went to ACH and were admitted. They took about 18ml of blood (yes- thats alot). They are testing his chromosomes and metabolic levels. (genetic testing). They planned to do a Lumbar Puncture(spinal Tap).

Aug 8, 2013     Around 5:00pm they took Ayden back for LP without sedation. They had to take 10ml of fluid which the Radiologist told me was a lot for a baby. It could cause a really bad headache. That is over double a normal LP for a baby. They did it in Internal Radiology so they could guide the needle. The radiologist called to tell me after the procedure to make note for him to NEVER have this done again without sedation. She said he was fighting them tooth and nail. Only if critical condition to allow without sedation. He came back wheeled in on a wagon laying completely flat. That is by far the saddest, scariest, worse heart wrenching feeling I have ever had. It was completly unimaginable. No parent should EVER have to see that. I laid with him in the bed until a nurse came and said they had to come back in and get 2ml of blood to go with LP. Really??? You need to poke my baby once again when we have sat here all day doing nothing waiting on y'all. He has been through so much already. No matter what we said they went ahead and poked once again. They blew veins. It was HORRIBLE. I was crying, his daddy was crying, my mom was crying, and he was SCREAMING!!! 

Aug 9, 2013   The results that they have back are all normal. The spinal fluid taken was great. NO blood was in it which is great. They discharged us from the hospital with a medicine called zonagran. Here we are with yet another medication when I am scared of the first one. (Note: no one has told me he has epilepsy.) I did not have to give the new medication but they sent us home with it as a next step. 

August 10, 2013 Ayden is still having seizures. That afternoon they became intense. VERY INTENSE!!! Happening every 5 seconds for around an hour so I gave the zonagran (25mg) they sent home in case we wanted to try. He only had about two more the rest of the night.. Praise Jesus. 

August 11-12, 2013   Very few seizures- continuing the zonagran- 25mg morning and night.

August 13, 2013        Seizure Free

Myoclonics are BACK!!

June 24, 2013 Ayden woke up having jerks constantly. More than 1 a minute like 10-15 a minute. If you can only imagine the way I felt. I had no control over my child. He could not be out of my arms because they were so intense that they would knock him backwards if he was sitting and make him fall if he was trying to crawl.This went on for 3 days.Yes- 3 horrible very long days. I'm not really sure how I survived. I prayed alot. I begged God to take these horrible things away from my baby. Give them to me. Give me anything- just make him better. PLEASE PLEASE!!!  I called Dr. Sharp (Ayden's neurologist- Chief of Neurology at ACH) on Monday and he said to give Ayden 1.5ml of Keppra 2x a day. We did exactly what he said. From the beginning I have been petrified of the AED (Anti-epileptic Drugs). I also sent him a video of Ayden having the "jerks". He told me they looked like myoclonic seizures. Yes- I was crazy!! What parent wants to hear their child is having seizures. The Dr.'s act like its no big deal. Nothing to be alarmed about. NOT BE ALARMED?? MY LIFE IS UPSIDE DOWN AND SIDEWAYS!!! They started to decrease on Thursday of that week (June27). He still had them until Sunday June 30. Like magic they would be gone. It was so crazy. I could usually tell you exactly how long each cycle would last and when another would begin by this time. 

Back Up::: The day before we went to a swimming birthday party. It was a very hot June day. I didn't let Ayden stay in the sun much because of his age, but I was trying to let him live as normal of a life that I could manage. (Mommy has major issues when her life baby boy is sick.) There were a lot of people there. So that means alot of stimulation for Ayden. Stimulation can trigger seizures. FYI- Any foods, lotions, smells, etc that contain stimulants can trigger seizures. At this time in Ayden's little life any and everything triggered them. 

(Ayden with his cousin Lauren)

Ambulance Ride

May 23, 2013 Ayden woke up and played for about 5 minutes and then seemed to stare off. I picked him up and called his name- no response. I took him outside constantly calling his name and after about 1 minute he became alert again. I sat him up to make sure he could still sit up and he seemed normal except very fussy. He laid down for a nap around 11:15 for about 45 minutes. He woke up and played for about 5 minutes. He went into a daze with his eyes locked in place. He never took a breath or responded. We took him outside, called his name, shook him- nothing. We got in vehicle and headed to the hospital. He came back to us after around 4 minutes. We met the ambulance on the HWY and they took him to Stuttgart. He had another episode at Stuttgart Hospital so they sent us by ambulance to ACH. While in Stuttgart they took a urine sample and did a chest XRay. He had another episode in the ambulance after waking. When we arrived at ACH he kept having these episodes. 7 total for the day. They gave him Keppra through IV and he did not have anymore. We stayed the night and had an MRI the next day. All results were normal. They released us the 24^th on 1ml of Keppra 2x a day. They told us that this could have just been a "bad" day. He may never have another seizure. How wonderful that would have been. If that would have been the path God directed us on I would not be here sharing my story with you. 

(In Ambulance being transferred from Stuttgart to ACH)

                                                  (May 24,2013)

                                                   (Headed Home- May 24)

The beginning

April 16, 2013  This is the first time Ayden had ever shown any indication that I noticed of jerking. He had always stared at objects and people. He jerked maybe 3-4x this day.

April 17, 2013 I noticed the jerking more maybe 8-10x.

April 18, 2013 Ayden woke up jerking. 15-20x an hour for the first few hours. We headed to ACH ER and when we arrived the jerks were not near as frequent maybe 10-15 the rest of the day. We had an EEG and it indicated that everything was normal. They diagnosed Ayden with benign myoclonic jerks. No medicine was prescribed. 

Ayden did not have another jerk until May 23, 2013

Stay tuned for the next post...

 (Ayden 6 months old with EEG wires attached)