So Many Updates!!!
We had a rough start in October. Brayden had 2 severe breath holding spells, and 2 seizures within a 5 day period. It has been a while since we have seen this much activity in such a short period of time. The first seizure he had was different from the tonic seizures I'm used to seeing. With this seizure, it was like he had no energy or muscle tone. He was laying limp on the floor but his body was twitching very slightly. I tried calling his name a few times and he finally turned his head towards me and said "what", so I asked him if he was ok but he just turned his head back to its side and the jerks started again. He was not with it at all, not even when he was responding to me, even though he was looking at me, his eyes were blank and his eyelids were half closed. This is obviously something you would want to record to show a neurologist, but of course my battery was dead because we had just come in from being out all day for a nature walk for school. It makes me nervous about his condition that changes are happening, I wonder if this is an indicator that he will not outgrow this seizure disorder. It adds, like, a million more questions to the list of unanswered questions I have. Also, I have been noticing what I think are seizures in the middle of the night...actually I'm pretty certain they are seizures. His body stiffens for a period of time, and he does the signature lip smacking that happens with seizures. You're probably wondering what his neurologist says about all of this. Well, that's a story that is getting a paragraph of it's own.
As you may remember, Brayden's case was reviewed by the Neurology dept at Dupont during the summer. His neurologist called me in August to let me know that they saw epileptiforms in his EEG and they wanted to start him on Depakote. Of course I wrote down everything they told me, and the doctor emailed me the titration instructions for the Depakote. I asked about doing an MRI to find out why the seizures are happening and where they originate and once again they said they prefer not to do it because it is invasive. So, that left me with questions. Also, after reading the side effects of Depakote and hearing that he will have to get his blood checked here and there to check for liver damage, I decided that we were managing things just fine without the meds right now. Recently I called to get a copy of the report with the details of their findings from the review. The neurologist never typed one up. So a report with new finding was never sent to the pediatrician to make them aware of the epileptiforms. I decided than that it's time to find a thorough neurologist for Brayden. Unfortunately, it is not easy to do this. With a referral from a friend of her kids Neurologist, I called CHOP (Children's Hospital of Philadelphia) to make an appointment. However, since Brayden has already been seen by a neurologist, I had to send everything I had from his medical record pertaining to his neurological care, to the doctor at CHOP, so they can decide if a second opinion is warranted. This is so frustrating! If I'm not happy with my sons current doctor, it should be my choice who I take him too. How does a doctor decide, who they want to care for and who they don't? Based on the information I sent them, can they really say that my son is not important enough for them to see? That they don't care if he's getting quality care or not? I thought doctors took oaths to care for every patient? How, in your heart, do you turn a child away? It is heart breaking to me. My only worry is that a report wasn't done regarding these new findings so all they have is my word, my notes, and the doctors suggestion to start Depakote. I don't know. I am praying that God takes care of this for me. It is hard taking your child to a doctor you don't trust.
Ok, onto some very exciting news! On September 23, 2013 our legislation for Involuntary Breath Holding Spells Awareness passed the house of representatives with a unanimous vote! This a huge step in the right direction of spreading national awareness for this condition! Our next step is congress! So I wrote a letter to Congressman Patrick Meehan sharing Brayden's story, and our journey with BHS. This letter was delivered to Congressman Patrick Meehan by my state rep's office! While I am waiting for my next steps with the legislation, I am making strides in spreading the word and educating the public on BHS. Ethan, my oldest came up with the idea of making loom bracelets with the BHS colors (purple, white, & blue) and selling them to help raise money to further our awareness efforts. Well, I took this idea and I am running with it! The bracelets are $1, and I will sell them to anyone interested with access to our website, and this blog to give people the materials they need to learn about this condition. My sister bought 20 of these bracelets to give to her coworkers, and came up with the idea to have Brayden and Ryan come up to her work to hand them out with a write up on BHS. So we did, and what a great experience this was! By simply sharing a story you can bring so much awareness! I have now gained the support of past coworkers from Apria Healthcare (a previous employer of mine)! One of the supervisors is even going to share my story with her bosses to see what we can do about getting corporate sponsorship from Apria!! This is so exciting! Anyone who reads this and wants to get involved, there is something very simple you can do, and that is share your story! By simply sharing your story, you are spreading awareness, gaining support for our cause, and helping to make BHS a household name! By doing this you are helping to rid BHS of the stigma, that our kids are now forced to walk around with!
There are more plans in the works. Fundraising events, walks, awareness apparel and merchandise, educational materials for doctors and medical staff, information pamphlets for parents with newly diagnosed children! I am very excited about all of this. All we need is a positive change, and that change starts with the parents of breath holders!!
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