My Favorite Blog Post EVER!

I wrote this April 27, 2013 before I had Brett’s diagnosis. It is the most read blog post I ever wrote. It’s also my personal favorite! ~Denise
Ones Mountain is another’s Molehill…

 Being Brynn’s Momma has brought me to many support pages, so many blogs and many places reading about some really special children. Across the Special Needs community, even the Epilepsy support groups there are as many varied parents as there are children. Some parents tend to take it all with stride, on the outside it appears that they have it so together it makes you wonder just how they do everything they do. Others are so fragile, you pray that the next moment will be met with relief as you just feel that they cannot possibly handle another thing. I tend to be somewhere in the middle, at least I would like to think I am.

 I remember when Brett was 2 and I found out that his “never-ending sickness and recurring respiratory infections” was actually asthma. I remember how traumatic it was for me to watch as they pricked his little back 25 times to do the allergy test. For me as a parent, before that moment even with four older children at that time, that was the most traumatic thing I had ever experienced with my children. The first time he had to be rushed to the ER because he couldn’t breath despite the treatments at home was more than I thought I could bare… Not because I couldn’t handle it, but because to me it was the worst thing ever. My reality, my world and my perception was shaken and changed forever in under 15 minutes…

It was as if the whole world stopped….. In one split second.

In S L O W M O T I O N….
I watched in horror as he laid on the floor jerking, foaming at the mouth…. His Daddy with him talking to him, calling his name… 
Brynnon, Brynnon…. Oh GOD please help him… I think it’s a seizure… 
He’s not breathing… I am screaming to the operator… 
Flagstaff Street…. F L A G S T A F F Street… 

Oh my God, please Abba Father…
Please help him breath… What is happening…. Oh God please make it stop……. Flagstaff is on the left…… Oh God please hurry…… 

He is breathing…… He stopped Jerking……… He won’t wake up…….

Thank God the ambulance is here…

Ah, now this was different territory than I had ever experienced. To see your child with eyes rolled back, turning blue, shaking and not knowing what is happening… that is by far the scariest thing I had ever experienced. My perception of the event in that moment was a billion times worse than it was. Simply because I had never experienced anything like that in anyone, or my child.

Brynnon….. Brynnon….. Oh GOD Please No…….
Screaming for help, no one can hear me…. 

He’s not breathing….
HELP…. Okay, I can do this… Turn him on his side….
His Daddy comes… Gets on the bed with him… Holding him……
Time always seems to go so S L O W L Y….
911… My Son he is having a Seizure….  
He is not breathing……..
He will be 11 tomorrow…


Over  the years, my perception has changed some… I am still terrified when I see a Tonic Clonic seizure, but as long as it stops before that 5 minute mark I can handle it pretty well. Once it reaches over 5 minutes my adrenalin runs wild and I am scared to death that he will not come back to us. The Complex Partial and other seizures I can handle a bit more, those too scare me after the first minute or so. I guess because I have seen so many, your tolerance grows as with any other thing. So when you come across a Mom, a blog, a support site and you are tempted to think that person is making a mountain out of a molehill… remember that everyone’s mountain is different.

I think Brynn is having a seizure… The words echoed in my mind…. 

Handing Abigail to somebody…  I can do this…
TIME… What Time Is It?????? 1:39 AM…. 

Oh GOD he is not breathing… Call 911, we are supposed to wait…

TIME??? 5 Minutes…. He is still not breathing…

His lips are blue… His chin is BLUE… CALL 911….
He’s not breathing…….  I am Suctioning his mouth… 

He’s still not breathing…. Oh Father please let him Breath…

Okay time he is breathing and lightly jerking…. Time…. 12 minutes….
He is going into another seizure I think… Okay, Brynnon stay with me… 

He is having another seizure I think… and another…
Fire Department is here… Ambulance is here… 
A shirt…
I can’t believe I forgot his shoes….

I have had people express that they don’t know how I do all I do, when I feel like it will never be enough.
I too have had a family member look me straight in the eye and say “There is not a GD thing wrong with that boy.” and another say “He’s not retarded, if you keep treating him like something is wrong your gonna make him retarded.”  Ignorance abounds in every area of the world. In our families, in the grocery store, in schools, even in the very Special Needs Communities that are supposed to help and support hurting parents. Some people think that all children affected with Cerebral Palsy are severely intellectually disabled. Some people think that all children that are Autistic are completely non-verbal. Some people think that all persons with Epilepsy will be intellectually disabled. Some people, even physicians, think you cannot have seizures while sleeping.  Some people think there is only one degree of intellectual disability. Some people just do not think. They assume that they know what they are talking about, refuse to take the time to learn anything… because to them your mountain is just a molehill. Nothing you could ever say to them will change that… 

 So let the tears of that hurt roll off that mountain and eventually, it will create the most beautiful garden for you and your child to sit in and explore all the beautiful flowers that the Father has created in His awesome wonder and perfection…

Each and every one of those special children whether disabled or seen by the world as perfect are indeed perfect. God does not make mistakes… and even if you feel like you cannot handle the mountain in your life. I can tell you with all certainty, that God knows your mountain and He would never give you more than you are able to bare. Every parent has their own mountain to deal with on a daily basis. Some more scary, some more life threatening, some more stressful, some more life altering than others… but never forget… all are traumatic to that parent. Yes, your mountain may be a Molehill to someone else and even more shocking your Molehill may be a Mountain to someone too… Just remember…
“I can do all things through Christ (Messiah) who strengthens me.” Philippians 4:13


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9/20/2015 Update

We have had some busy weeks… We have once again moved, but this time we purchased a home. 

Brett has been on a roller coaster of seizure instability for months. We had finally gotten great control of the Atonic and Myoclonic seizures when his ammonia level went too high and his platelets too low with Depakote. We went down on his dose and they reappeared again causing several falls. So we added a supplement and went back up. This is the first time with either boy we have had this problem with ammonia and platelets. 

Unfortunately, it did not give the same result and the Atonics came back full force along with Myoclonics and sleeping 14-16 hours a day. As of now we added Onfi and halved his daytime dose for a few weeks and he has somewhat stabilized again with those seizure types. His Complex Partials have not gone into status nearly as often, but the shorter Complex and Simple Partials are about the same. His VNS has been going off the same as Brynn’s for several months now, so I would have expected to see a difference if it was going to work at reducing his seizures like I believe it did for Brynn. We are almost finished weaning Depakote and are seeing improvements in his wakefulness and less seizures. 

Brynn has been pretty stable averaging just 1-2 seizures a week for an entire year. He has only had a few daytime seizures in this time and has somewhat cognitively leveled out to where I presume he will remain. We have worked really hard on inferring and basic life skills while maintaining his Reading and other scholastic levels. I have reached out to the local fire department to see if they will let him volunteer there to give him some positive men to have an influence on his life and prepare him for adulthood.

When people ask what made the biggest difference for Brynn I have a hard time knowing what to say. I do believe the VNS has had a benefit, especially on his depression. The Vimpat has had a wakening effect on his thinking and I believe it helps with the slow processing. The Onfi made a tremendous difference giving him about 50-60% reduction in Complex Partials. The Fycompa has stopped them from generalizing into Tonic Clonics as well as removed about half his Tonic Seizures. Altogether, he has gone from 4-6 seizures a week being a good baseline to his current 1-2 seizures a week. We will take that happily. He has lost over 40 pounds through watching his eating and being back in the country! We are so proud of him!
..

On June 25th Blue was surrendered to the Breeder the Trainer got her from. I had her accessed by a local trainer. He determined that she has an unstable temperament and should have never been placed as a Service Dog. He also said she posed a risk for biting our 5-year-old Daughter due to her temperament problems. We decided that was a risk we couldn’t take. It took Brett five days to realize that Blue was not only gone but wouldn’t be coming back. He has had a really hard time adjusting to life without Blue. The trainer agreed to let us place Blue with the Breeder, who says the Mom is a lot like Blue. It’s no surprise really that one of the four puppies did not make it as a Service Dog. I have done a lot of research and have learned a lot over the past few weeks. The most staggering fact came from a fellow Mom’s blog. Her Daughter received a Service Dog from another Service Dog Training facility and she stated that they “temperament tested over 100 dogs to enter 10 into the program. There were 5 graduates.” Wow. Blue came from a litter of 8. Our trainer did not temperament test the 4 available female pups she trained until she picked them up at just past eight weeks of age. How many did she put out as Service Dogs to families like us? ALL FOUR! Not only impossible that 4 out of 4 could finish successfully as Service Dogs, but very irresponsible, just ask any trainer! She stated in an interview with NSDF, that she temperament tested the dogs before they are chosen. NSDF was our sponsor for Blue and the NSDF website states “Paws-4-Seizures, the seizure and multi-service dog placement program at National Seizure Disorders Foundation, is available to any qualifying individual with  diagnosis of seizure disorder or multiple diagnoses requiring the assistance of a highly trained multi-service dog.” Our Experience:
10 Month old Blue was delivered on April 9th as a Service Dog listing Brett (10) as the handler. The trainer spent four days coming to our home to show us how to handle Blue. It was on the second day that we heard Blue Growl and Bark for the first time. We passed it off as dreaming because she was sleeping on and off at the time. When the older two boys would come downstairs to leave for work she would do the same. When my husband and oldest son would come in from work she would o the same sometimes. 
When we received Blue it took a full 10 days just to get her house trained, have to give ny husband credit here he questioned her training from day one because of this fact. We all knew with the first visitor to our home we had a big problem when she had to be taken outside due to growling and barking. The second visitor (a family) proved that we had persistence, no matter who it was she was going to react the same way. Imagine the horror that the “Service Dog” would cause if she were to bark and growl at paramedics coming to help one of the boys? When she growled and barked at a grocery store manager, that’s when we knew we needed help, what use is a Service Dog when you can’t even take it in public? We did everything we could do and were heartbroken to learn that she couldn’t be “fixed” to really fit into our home even as a pet. We adopted a Basset Doxie puppy who Brynn has really taken a liking to, but Brett has not been able to bond with the puppy. We are looking into adopting a German Shepherd from a rescue. She happens to look exactly like Blue, she was malnourished and is even abnormally small like Blue. Not sure if we will get her, but that’s the direction we are going at this time to help Brett with the loss of Blue. 

 As for the trainer that trained Blue, I notified her of this problem with growling and barking on April 28th that occurred on the 27th with our realtor. She suggested good firm prong collar correction. We did that with second visitors on the 29th, again had to take her outside she would not stop. Notified her again on May 9th that she did it to the manager in the grocery and she said she would come show us some things. We decided to have her fixed, hoping that it would help to calm her down if the problem was hormonal. When Blue was spayed, the vet said that she had never been in heat and did not look to be close to having her first heat cycle. So all that time, every time something negative was happening the trainer would say “it’s preheat” definitely was not. Meanwhile, I did a lot of research. She said that she would replace Blue on June 19th, I feel that we have been getting the run around ever since. We were supposed to get a photo of the Golden Retriever she was testing on Jul. 6th and she explained on July 29th that dog wasn’t going to work because she is too mouthy for Brett. So that’s where we are in our Service Dog Journey. Sadly, I have heard from several families that have had bad experiences as well.
Video Links of Blue:
https://www.youtube.com/watch?v=XbLbc4zZVg4
https://www.youtube.com/watch?v=bxWYzbwVeQ8
https://www.youtube.com/watch?v=BDhR55ZYHKo
https://www.youtube.com/watch?v=uyBJwL-pAH0
https://www.youtube.com/watch?v=9NXrwYHd__U
https://www.youtube.com/watch?v=lfSIWnjnhsg

Recommended Reading:

*IAADP Minimum Training Standards for Public Access:

 http://www.iaadp.org/iaadp-minimum-training-standards-for-public-access.html

*Service Dogs Training Standards

These are intended to be minimum standards for all assistance dog programs that are members or provisional members with ADI. All programs are encouraged to work at levels above the minimums:

http://www.assistancedogsinternational.org/standards/assistance-dogs/standards-for-dogs/training-standards-for-service-dogs/

*How to choose your service or assistance dog program:

http://servicedogcentral.org/content/node/517

*Finding a program or trainer and evaluating the one you’ve found:

http://servicedogcentral.org/content/node/591

Sources:
http://nationalseizuredisordersfoundation.org/nsdf-paws-4-seizures
http://seizinghope.com/category/seizure-dog/

What does Epilepsy look like anyway?

As a Caregiver of two boys with epilepsy, I have done tons of research. I have read about different seizure types, symptoms, the brain and lobes involved, genetics, syndromes and the list goes on.

First, let’s go over the basics. There are over 40 different types of seizures. They are all either Partial/Focal or Generalized seizures. We will do a quick review of the basics!

Partial/Focal Seizures start in one area of the brain often called a focal point. The symptoms of this type of seizure depend on what area of the brain is having activity.
Breaking this down further, there are two main types of Partial seizures:

Simple Partial Seizure: Just on small area is involved. The person is aware that something is happening and will remember the seizure.   Depending on where it is occurring it can include strange smells/taste, weird feelings, hallucinations, visual flashing/colored lights, stiffness, numbness, tingling or jerking of a body part, intense fear, euphoria, abdominal pain, increased heart rate and others. Sometimes a simple partial seizure is called an aura, when it happens as a warning of a bigger seizure that follows.

Complex Partial Seizure: A larger part of the brain is involved. The person is not aware of what is happening and will not remember the seizure. Depending on where it is occurring the person may wander, pick up things or pick at clothing, smack lips, cry, scream, repeat words that don’t make sense, mumble, make repetitive movements without purpose (called automatisms) as well as having same type symptoms as the simple partial.

Generalized Seizures start in the whole brain at the same time. The person will not be aware of what’s happening and will not remember, with exception to the myoclonic.

Absences: The person may stare blankly, chew or have lip smacking eye lid fluttering usually for a few seconds and go back to what they are doing. This seizure is often thought to be daydreaming and is easily missed.

Tonic: The person experiences sudden body stiffness without warning if they are standing they will fall (usually backward) and can injure the back of the head. They may bite their tongue or cheek. the seizure is generally very brief and recovery is quick.

Clonic: The person experiences muscles will contract and relax rhythmically. The breathing is likely affected and they may sound noisy while breathing or stop breathing. The skin may become pale or even turn bluish in color and they may lose bladder/bowel control.

Tonic Clonic: The person experiences both the Tonic and the Clonic described above. This seizure is generally the most recognized seizure in epilepsy.

Myoclonic: The person experiences quick muscle jerks, often shortly after waking up. This seizure type is classified as generalized, although the person is conscious and aware that it is happening.

Atonic: The person experiences a sudden relaxation of the muscles and often will fall (usually forward) and this seizure is also known as a “Drop Attack.” The seizure is generally very brief and recovery is quick.

Now that we have that covered let’s talk about how it feels. I have seen many types of seizures but I have never had one. I can only imagine what it must feel like, research the subject, ask the boys and others what they feel. So I did just that.

Simply put, if a seizure is a Simple Partial or Myoclonic the person knows it’s happening and can respond. They will remember what happened. If it is another type of seizure the person will likely not remember much if anything that happened. They may seem confused, angry or even just want to sleep. Most people with epilepsy report that after a seizure they are tired and don’t want to be asked a bunch of questions. They may have pain in the body due to injury or muscle spasms. They may also know that they are missing time and that can be very frustrating. So, none of us that have not experienced seizures have the right to judge how they should feel, and the best thing we can do is let the person just relax.

I cannot imagine what it must feel like to experience refractory seizures, but I do know what it looks like.