Fundraiser for my Son. We are currently raising money so that we can take our…
Taking the Gloves Off
Taking the Gloves Off because Enough is enough is ENOUGH.
As forward as I am, I have tried to step back and let the professionals do what they do best. I have tried to hard to not be the mom who does too much research and interject my opinions. I have been as good as I feel like I can be because I want the best care for my son.
In the Details
Now, don’t get me wrong. I like our current doctor. He normally responds to my emails (though not so much lately), he has agreed to confer with a specialist (Dr. Mitchell) in LA to bounce ideas off of each other. I’ve sent him my YOUTUBE channel to show him his progress. I’ve kept detailed records of daily symptoms after starting his ACTH shots.
I think it is time for me to be a bit more assertive. Probably much to his chagrin. I am going to be doing lots of homework on OMS and I’m going to be asking a lot of questions on my facebook support group. These people are a wealth of information. They have had success and they’ve had failures and I want to glean from them.
Our Current Issues
- Constant Shaking. Worse after a nap.
- Opsoclonus is constant.
- Inability to hold utensils and feeding himself
- Fine motor skills are struggling
- Gross motor skills are struggling
- Not sleeping well
- Distinct speech issues
- Glassy-eyed wild screaming fits where his whole body stiffens.
- OCD is rearing its ugly head
- I believe he has had some acid reflux.
- Not wanting to eat
- Unsure of everything and everyone
So Many More
There are many more issues….but my brain is shutting down. I will research each and every one of these things and I’m going to fight for what I believe will help him….even if it means stepping outside of myself and trusting Jesus and changes doctors. There is a great dr in Boston and another wonderful lady in LA.
Big Daddy and I will sit down and evaluate his symptoms and how we can holistically help him or if we need help from the world of the medical field. We will discuss whether we will remain and trust our current dr or step out on faith and go to LA or Boston.
There will be nothing that will stop me from figuring this out. Nothing. God goes before me, He is behind me and He has me flanked on the right and the left. I also have my family holding my arms up and intervening on Hunter’s behalf. I will not shy away from asking for prayer and specific prayer for him. This “condition” will not define my son. He will overcome and he will win. There will have no side effects because he will be the exception to the rule.
I’m done walking around the mulberry bush….never was my strong suit…..now, I’ll do it my way (with God’s guidance, of course).
Specific Prayer Requests
**figuring his sleep schedule out.
**kicking around melatonin or Trazadone
**Work on rages and how to better handle it without me losing my shit.
**Asking for help more
**Not feeling guilty about taking time for myself to rejuvenate.
**He has a 3 hr assessment next week for OT, PT, and SLP…anxious for that and to see the results
**15-16 is set for IVIG and Chemo
**Meeting with our current dr and me being bold (asking for CBC and FA testing) and not just agreeing to agree.
Edited on 12.3.18
**It must be noted, this post was made when Hunter was MISDIAGNOSED with Opsoclonus Myoclonus Syndrome. OMS is a clinical diagnosis. Doctor’s should have done genetic testing to rule out other causes of his symptoms, but the did not. His official diagnosis is genetic. It is called Ataxia Telangiectasia Like Disorder.**