I hate seizures so much

Such a sad week, Conner’s seizures have become worse. He now is having 3-5, 1-2 minutes grand mals 70-100 infantile spasms a day. He desaturated during his grand mals, and is now foaming at the mouth with these ones. I haven’t needed to give him his emergency med yet but I can tell they are getting worse. It takes him quite a while to breath normal again afterwards. Please keep us in your prayers. We need as much strength as ever right now. Thanks everyone for keeping up with him through his page http://www.facebook.com/HopeforConner  He is so strong..

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7 benefits you didn’t know about having Pets

You have heard the term “ An apple a day will keep the doctor away…” Is it true a pet a day will keep the doctor away?

I have ALWAYS been a huge animal lover. After my traumatic pregnancy with our son, that is when I really found that out about myself. I have a Dog named Jack, he is a black lab pit mix. Then we have our little kitty Wendy. There are so many benefits to having animals and most of those benefits people aren’t aware of. Take a look!

Immunity: Children who live with Dogs or Kitty’s from infancy or less likely to develop animal allergies later in life or asthma. Though it is not certain but researchers suspect that early exposure to pet allergens can actually help the immune system. It could help your child build up an immunity. How awesome is that! Better start that back yard Zoo you always dreamed of!

Therapy: What is pet therapy? The use of trained animals and handlers to achieve specific physical, social, cognitive, and emotional goals with patients; also called animal-assisted therapy or AAT. Pet therapy has been known to lessen depression, anxiety and fatigue. My son Conner and our dog Jack are best pals. When Conner began having a seizure one day we laid him next to Jack. The fur and emotion for Jack helped Conner come out of his seizure quicker. I have seen firsthand what the power of animal connection can do.

Blood Pressure: Did you know that just by petting your cat or dog, you can lower your blood pressure Cholesterol? Researchers looked at nearly 4,500 adults and found that cat ownership was related to a 40 percent lower risk of suffering a fatal heart attack.

Love Connection: Forget dating sites just take your dog for a walk! Dogs are great conversation starters. This can really help ease people out of social isolation or shyness, The conversation can stay grounded at the dog or it can turn into “I do” who knows…lol. Hasn’t anyone seen 101 Dalmatians???

Weight watcher: A research was done with 2,000 adults. The adults who owned a dog were much less likely to become obese because they felt more motivated to walk their dog. We all could you a little motivation right?

Mental Security: Just knowing that you have a dog that barks is enough to help you fall into a good deep sleep. I have found myself scared and nervous when my dog isn’t with me at night for one reason or another.

Service: For the disabled, or mentally challenged, having an animal to help guide them or service them in some way is just amazing. Dogs can be trained to sense seizures, sense an autistic melt down, help an elderly person who has fallen or is lost. There are so many things animals are capable of doing. It is just incredible.

Such a large majority or animals are killed everyday because of animal shelters being over crowded. How sad it is to think about what great benefits these animals can bring, and they are being killed because nobody wants them. I am a huge advocate for rescue animals!

I think its time you head down to your local animal shelter and adopt, dont you?

5 seizure triggers you haven’t thought of…

5 seizure triggers you haven’t thought of…

Seizure: “A seizure is the physical findings or changes in behavior that occur after an episode of abnormal electrical activity in the brain. The term “seizure” is often used interchangeably with “convulsion.” Convulsions are when a person’s body shakes rapidly and uncontrollably.”

One in 26 people in the United States will develop epilepsy at some point in their lifetime.

Are there things that you can avoid for yourself or a loved one who suffers from seizures? YES!

1. Sounds.I have found that a lot of people complain of sudden, or loud sounds triggering a seizure. I know this is true because if things get too loud around my son he becomes overwhelmed and ends up having seizures. I resorted to buying my son headphone to block out sound. Here is the link to buy a pair for a child. This is the same pair Conner has that he wears every day. http://funandfunction.com/noise-reduction-ear-muff.html
2. Extreme temperatures have been made known to actually make seizures come on. We live in a valley and during the Summer it can become extremely hot. Some people have noticed that either very hot or very cold atmosphere can trigger seizures. Have you found this relatable? Maybe try to stay out of that crazy weather silly! J
3. Light Fixtures. Obviously the most common trigger you have heard or noticed is flashing lights, but did you know fluorescent lighting flashes so fast you can’t realize it but your eyes see it! You will find fluorescent lighting in a lot of stores and businesses. Obviously this is hard to avoid. We got our son special tinted glasses. The effectiveness of wearing a tinted lens depends on both the color of the lens as well as the intensity of the hue of the lens (and therefore the light transmission).  Several studies show that blue-tinted lenses may help reduce the photoparoxysmal response…thereby reducing the number of seizures.  Some patients and their doctors may not realize that this tint can be worn in a contact lens instead of in spectacle lenses. Have your ophthalmologist test your pupils with different shaded colors. Conner’s most effective color is brown/red.
4. Over Stimulation. Putting more stress on a person with epilepsy can cause seizures for sure. My son will most likely have autism, so he hates water. Whenever I give him a bath he gets stressed and seizes. He is G-tube fed, so whenever I try to feed him by mouth he gets nervous. I try to do everything calmly and slowly ease him into it. The key is to keep track of what triggers the seizures. Everyone is different.
5. Strong Scents. A year ago my son was relaxing and my daughter came into the living room and sprayed an air freshener. He instantly went into a grand mal seizure. From that point on we have been very careful to never have anything smelly around him. Sometimes it is unavoidable. People wear perfume, or you go into people’s homes and they have plug in’s on every wall…If you seem this may be I have found that if you MUST have smell good things around try essential oils. I have found that these all natural scent’s don’t affect our son! http://www.doterra.com/#/en/ourProducts/essentialOils/singleOils

Please share with me your thoughts and triggers you have found!

Get your doctor to listen to you!

How to make your child’s doctor listen to you!

1^st : VIDEO TAPE (If possible) what your child is doing.

For example, if you suspect any of the following, try your best to capture it on video.

Autistic features, seizure activity, pain, loss of coordination, or anything that is visual.

Bringing only your words to the table when the doctor asks, “What going on?” You might as well be walking into a courtroom without evidence! Keep a recording device on you at all times so it’s ready to go when you notice the change.

This is based on personal experience. When my son began having Infantile Spam’s. I brought him to his pediatrician, I told him what I was seeing. He said “Kids do funny things sometimes”. I knew he was wrong. So very wise advice was given to me by another TSC mom. “Video your son having his spasms” she said, and so I did. Doing this made the world of difference. We drove our son to the city and showed every doctor that came in to see him, the videos. As I thought, Conner was then admitted and diagnosed with Infantile Spasms. TRUST YOUR GUT!

2^nd : JOURNAL your heart out. Keeping a log of your child’s activity is important. When the doctor asks you “When did that begin?” “How often?” “How long does it last?” Questions like these can be referred back to your journal which makes it a whole lot easier. Instead of just sitting there and saying “Oh I don’t remember…” It is amazing how much they appreciate your seriousness of your child’s care. They respect your efforts so they know that you will be expecting the same effort from them!

3^rd : MEDICAL BINDER’s are very helpful. You can make your own or ask your resource center if there are programs that provide you one for free. Conner’s binder consists of Medication lists, dates of surgery, clinic notes, MRI and CT scan disks, and lots of other important information. I don’t know about you, but I hate being asked the same question a million times. My son’s binder has become my best friend. The first thing I do is hand them his binder. I hand it to his pediatrician, the ER nurses etc…All they have to do is make copies of what information they need to obtain.

4^th : RESEARCH. I know the internet can be scary and some of you may disagree with me, but I have found researching my son’s symptoms, extremely helpful. The stories you find of other parents could possibly save your child’s life. When Conner was on ACTH (Steroid for Infantile Spasms) it began making his tumors in his heart grow! Thought the big city hospital never heard of such a thing. I printed out what I found and brought it to their attention. They quickly ordered an ECHO, long and behold, I was right. They immediately stopped his medication. Who knows what would have happened if they didn’t believe me.

I hope you have found this helpful. Please contact me if you are having difficulties communicating with your doctor. Remember that the doctor will only be as polite as you are to them. So only be stern when you feel the need to be. Again…trust your gut, you are usually right. Yes some of us may be looked at as “Paranoid”, but my motto is, ”It’s better to be safe than sorry!”

Here is a link to a video I took of Conner’s weird symptoms. I already knew they were Infantile Spasms, the beginning diagnosis was Multifocal seizures but they transformed into IS a month later.

https://www.facebook.com/video.php?v=457172697667480&set=vb.431526783565405&type=3&theater#