Thankful

Today I am thankful. I am thankful that Ayden was able to participate in his cousin's birthday party. Something so simple to most is huge for us. I have fears about doing everything because I do not want to ever put him in a situation that triggers a seizure. He misses out on a lot of activities because of my fears. I fear his seizures. I fear the next one. I fear how long they will last. I fear the medication he takes. Today there was no fear. Today it was all about a celebration of my perfect little niece's third birthday. Ayden loves her so much. She is is his Sissy. His one and only sissy. Another fear the seizure's have given me. I'm scared to give him siblings because I do not want another special baby to ever go through what my little angel has been through. Do you fear this? Do you have fears?

As I said earlier, today is about being thankful. I am thankful for each and everyday that my little man is able to play and participate in the activities all the other children get to participate in daily without a thought.

Thank you Lord for today. Thank you for your daily blessings.

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.........