Awareness News and Breath Holding Updates!
Lets start with our legislation update! I received some good news today from my state reps office! Our legislation for Involuntary Breath Holding Awareness has 20 cosponsors in the House of Representatives! I spoke with my State Rep's assistant today and he stated that the House goes back in session at the end of this month and Rep Nick Miccarelli is pushing to have this resolution voted on ASAP! After it gets voted in, myself and Rep Miccarelli's assistant will be coordinating to reach out to local congressman and state senators to push this to the next level!! I will keep you posted as we progress forward in this process!!
Since I last posted on Brayden's condition, we have been noticing the breath holding spells gradually getting worse. From the time we started the oils, up until a couple weeks ago, Brayden's spells were very mild, similar to the way they started out after birth. With him unable to breathe, and turning bluish purple, and then he would catch his breath. A couple weeks ago, the length of breathlessness is starting to get longer, and he is starting to get that strained look in his face from being without breath for so long. Every now and then, I see the twitching in his arms and legs again with these spells as he is gasping for breath. With one particular spell, he was arching completely backward. It is so upsetting to see these characteristics of severe spells returning to my little boy. But his strength and ability to overcome and move on with being a 3 year old boy, keeps me strong!
Since I last posted Brayden is averaging 1-2 seizures a month. I distinguish these seizures from breath holding spells, because they don't have and outside cause, such as upset or injury. His most recent seizure lasted 3 1/2 minutes, too close to that point of having to scramble for the Diastat than I am comfortable with. While this 1-2 a month seizure average is a far cry from how frequent these seizures used to be, they seem to be lengthening, which is scary to me. With the diagnosis of Unspecified Pediatric Seizure Disorder now on paper, I worry about what this lengthening could mean. But I'm getting ahead of myself with that worrying. The important thing is compared to where we started, we have come such a long way, and Brayden is doing very well. He is very smart, and developing in every way a 3 yr old boy should be, and I am very thankful for that.
Since I last posted, we had started Brayden on Melatonin to help him sleep at night. I had read that in seizure disorders, patients who are overly exhausted are more susceptible to seizures. So to avoid this I started Brayden on a low dose Melatoning (1 ml) around bedtime to help him fall asleep at a decent hour. While it worked in this respect for a little while, Brayden was still waking up 3-4 times a night upset, he tossed and turned all night, and was waking up very early in the morning. Realizing that this supplement was doing what I had hoped, I took him off of it. I can't see giving him something whether supplemental or medicinal if it's not going to do the job. Not sure what to do next, or where to go from here. Might talk to his pediatrician about taking him to a sleep specialist.
Well, that is all the updates I have for now! Please check out the following resources and pass along to those you think might find this helpful!
On Facebook? Check out the group 'Parents of Breath Holders' for amazing support, and story sharing!
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