Past, Present, Future...

If some one would have told me 3 weeks ago that I wouldn't be watching my son suffer anymore, I wouldn't have believed it. Brayden's spells started after birth, losing his breath each time he cried for a short period of time before starting to cry again. At 14 mos old he had a seizure and lost consciousness with the spell for the first time. Shortly after that he started having seizures without a proceeding spell. From that moment on our days were full of heartache as we watched our son suffer a condition even medical professionals didn't know much about. The continuing ER visits, doctor and specialist appointments and inconclusive testing as I fought to get my son the care and attention that he deserved from professionals who believed it was purely behavioral, led to me quitting my job to be there for him...a decision I will never regret.  I spent days and nights (sometimes to the wee hours of the morning) researching in hopes to find answers that were nowhere in sight.  Finally after pushing for so long to get the testing I requested from day one, we got an answer to the seizures that were not preceded by a BHS.  Brayden was put on a trial of Keppra which proved to be not much of a help, while causing side effects that were as hard to watch him suffer through as the conditions themselves. He lost his appetite, sometimes going a whole day without eating, he was spaced out, unresponsive to us, and suffered rage attacks. Doctors acted as if this was normal two year old behavior being mistaken for side effects and decided to increase his dose to the highest recommended for his age in hopes to stop the seizures.  That is when I put my foot down and decided to take matters into my own hands.

See, as a parent, watching your child suffer through a medical condition is hard enough, knowing that they are suffering for a decision made by you (putting him on the trial of Keppra), well that is the worst. I knew I had to do something, and with the help and support of a group of parents whose children suffer the same condition, it was possible.  In all my research, I never thought to look at the holistic approach to healing.  Having been going to school, and enrolled in the nursing program my efforts were to find the scientific answer to this problem. Now, I know there is another way, and there is no reason to ignore it, or pass up on the opportunity to help your child no matter how far "out of the box" it may be.  Thanks to essential oils, we are celebrating Brayden's 3rd week BHS and seizure free! This is a huge accomplishment since doctors tell you they will grow out of it between 6 & 8 and that there is no treatment.  Because of the oils I no longer have to watch my son suffer a condition that looks like death on a daily basis, I know longere sit by helpless as he seizes. I feel free, and hopeful for other parents that they will find these essential oils to use on their own children.

In the past month I have begun efforts to bring awareness to this condition. As a result of a meeting with my state rep, legislation is being introduced to observe July 14th as Involuntary Breath Holding Awareness Day, he is requesting the cooperation of CHOP (Children's Hospital of Philadelphia) to help find answers by furthering research and education on this topic.  A website is in the works to bring resources for parents, and accurate information to turn to so they won't have to feel the helplessness that current parents of children with this condition have.  I feel the future is bright for  this topic.  One day people will hear the term Breath Holding Spells and not hold us parent responsible for bad parenting and label our children as "willfully defiant".  

If you are a parent of a child who has been diagnosed with Breath Holding Spells, and are looking for ways to help them when medicine hasn't, follow this link http://mydoterra.com/lisacramer to order your oils. If you have questions on which oils to use and how to apply, feel free to ask! I am happy to spread the word on these oils so you can give your child the same relief I been able to provide for mine!  

See the difference for yourself...

Thank you for reading and for your continued support!

Talk About Irony...(and some extra news I'd like to share)!

Well as of yesterday, Thursday May 16, 2013, Brayden has gone 2 weeks with no spells or seizures!  This is very exciting news here!  So 2 weeks ago, we started using doTerra Essential Oils (http://www.mydoterra.com/lisacramer) on Brayden to try to "manage" his condition.  Having been through so much to try to find answers and help for him I was understandably skeptical that something so "outside the box" would work.  Two weeks later the only sign of this condition continuing to lurk is the fact that when he gets hurt, or upset he does lose his breath...but then he catches it again!  The loss of breath isn't even long enough for his face to change color.  It is amazing, I really don't know how else to describe it!  We use Frankincense on the bottom of his big toes, and Balance on the bottoms of his feet during the day.  In the evening we put Serenity on the back of his neck, and lavender on his temples.  What an unbelievable difference.  It's ironic that such a complicated condition would have such a simple management plan!  It's now hard to get used to the fact that he isn't going to lose consciousness or have a seizure! Each time I prepare for it, but nothing happens, its crazy.  Anyway, we are very thankful for this break through, and hopeful that these oils will continue to do the work that medicine couldn't!

And in other news...

As you may have already read, myself and another mommy of a breath holder began discussing starting an advocacy group to raise awareness for this condition.  On April 26, 2013 I met with my state rep to get advice on how to proceed with this idea.  Not only was he nice enough to give the advice I was searching for, but he went a step further to make this dream an even bigger reality!  State Rep Miccarelli is introducing legislation that will bring awareness of Involuntary Breath Holding to the forefront by recognizing July 14th as Involuntary Breath Holding Awareness Day! He wrote a letter to CHOP (Children's Hospital of Philadelphia) to get them involved as well!  The hope is that by bringing awareness, no other parent will have to leave a hospital with their child feeling completely lost and helpless.  I am very excited about this opportunity!  I began building a website, and designed awareness merchandise, with the help of another mom I created a survey for parents of breath holders to complete so I can be sure that the website is tailored to everyone's experience with this condition, and I petitioned the White House to bring awareness to this condition and push for further research, and for more education for medical professionals in regard to Involuntary Breath Holding Spells.  My dreams are big and my hopes are high for this project.  I hope our experience as parents of breath holders can help others feeling the isolation of this condition.  If you would like to get involved in these efforts please let me know! To show your support by signing the petition, please follow this link http://wh.gov/JnDU.

Thank you!

Hope for the hopeful?

We started using Essential Oils on Brayden to manage/treat his BHS on Thursday May 2, 2013.  We use Frankincense on the bottoms of his big toes, Balance (an oil blend) on the bottoms of his feet, and Serenity (an oil blend) on the back of his neck.  We apply these oils once a day in the morning.  We use lavender on his temples at night for a sound night sleep.  So here is this week's count...

                                     Night Episodes: 0

                                     Simple BHS: 0

                                     Severe BHS: 0

                                     Seizures: 0

I am hesitant to give credit to the oils due to having my hopes up and disappointment to follow shortly behind in the past, with this condition.  But I am enjoying the peace of this week and I hope and pray its the oils working, and that they continue to do so!

There is still work to be done.  Brayden is still a bit of a restless sleeper, and when he gets really upset he does lose his breath briefly (not even long enough to turn blue or purple), but he catches his breath and continues to breathe which is an incredible improvement!  We also need to work on fattening Brayden back up!  We just found out he is only in the 3rd percentile for weight, which I know is due to the Keppra.  This should be an easy task as his appetite has been getting better and better since coming off the Keppra.  

It wouldn't be right for me to end this blog update without giving the info and spreading the word on where to order these oils.  You can click on the following link or copy and paste it into your web browser:  http://www.mydoterra.com/lisacramer.  Lisa Cramer was incredibly helpful. She did not mind all of my questions on how and where to apply the oils, and trust me I had plenty!  When you are at a point where you aren't satisfied with the information and help your child is receiving this is an out of the ordinary, but very helpful place to turn. When you are getting nowhere, you have nothing to lose.  I am not the first person getting results from these oils either.  I recommend giving them a try.  One thing to remember is the world of medicine can not cross the world of natural healing.  So if your child is currently taking medicine and you are not getting results, speak to your medical professional to get information on how to take your child off of all medications before starting these oils.

If you have followed my blog from the beginning, or quickly read through it one night, you know the struggle we have been through in getting answers.  The roller coaster ride of hopes.  The emotional let down in experiencing not being able to help your own child.  Then you completely understand how thankful I am for the week we just had! 

Our week free of medicines...

Brayden was taken off all meds a week ago.  He has since had no interventions for his BHS or seizures.  During the past week he has suffered 6+ night episodes, 4 simple BHS, 9 severe BHS and 4 seizures.  The only changes in his level of activity come in the moments surrounding the severe BHS and the seizures.  He tends to be lethargic for a period of time after severe BHS and goes into a postictal phase of unwakeable sleep after seizures, which lasts for 3-4 hours.  So things are gradually getting worse, back to where we were when we started this journey.  Which I expected would happen.  Other than that he is the same great kid he always was without meds.  

I have the oils needed to start the holistic method of managing these episodes, however, I'm not sure if I want to wait until we come back from vacation on Sunday or bring them with us and start there.  Hmmmm...