My blog » Brain injury hope for parents «
My blog was created for parents who are searching for advice and testimonials about alternatives therapies for children with neurological conditions. I am absolutely for mainstream medicine I am using mainstream interventions for my son as well as alternatives therapies. Just that here I am talking more about alternatives not yet recognized therapies.
I am :Svetlana
Mother of Marc
Anoxic brain injury January 2016 at age 4 years 2 months ( Before his accident, he developed normally without any problems. A simple cardiogram could have shown his WPW ( wolff Parkinson wight syndrome )
https://fr.m.wikipedia.org/wiki/Syndrome_de_Wolff-Parkinson-White?wprov=sfti1
But he made 2% of the population « asymptomatic », not judged enough % for medicine to check every child ekg at birth?)
Cause of injury: (sudden cardiac death -resuscitated- asymptomatic not diagnosed WPW Wolf Parkinson Wright syndrome before his heart stopped).
More than 2 years ago my friend from USA started an online closed support group on Facebook for HBOT called “HBOT for Pediatric Neurological Conditions ”. She asked me to be the admin of the group and it so happened that she afterwards « gave » me the administration of this group. Now the group has become big ( more than 2800 members) of parents and professionals from the hbot feld.
https://m.facebook.com/groups/1834837990132052
For the first time since Marc’s anoxic brain injury, I no longer felt alone. I have other parents that can relate to how I feel, what is going on with my son Marc and they quite simply just “get it”.
So as well as on hbot fb page here on my blog I will welcome professionals to join my blog and share their knowledge. I will welcome parents testimonials for alternatives therapies they tried for their children.
And all my articles will be based on our personal experience ( the treatments we did for my son ) as well as on scientific studies I take in account in order to make a choice for therapies applied in my son’s rehabilitation program.
So my blog is for parents with brain injured children. And I welcome professionals to join my blog and share their knowledge.
But I request that they be respectful with us parents: I want you to know Doctors, that we: parents can’t just “get over brain injury”….and we just can’t accept that “nothing can be done to repair the brain especially when we see some promising research that does “repair it” but is not recognized and so not applied in mainstream medicine….We would love to move on in life as if our child didn’t have a brain injury. We would love to go back to that carefree attitude, a life where this horrible nightmare never happened. Unfortunately this is our reality. Our entire world revolves around brain injury. We talk about it in hopes that you or your families will never have to go through what we have.
I want you to know that sometimes the things you say to make parents of injured child feel better only make them feel worse! Please don’t say “God only gives us what we can handle”, “I don’t know how you do it”, “I could never do that”, “pray harder”, “everything happens for a reason” or anything along those lines and please don’t judge parents for whatever they doing to help their children.
I believe that it is not God’s will to allow my child to suffer from anoxic brain injury. I have to believe that sometimes bad things just happen. And I believe that for him it’s because mainstream medicine did not do cardiograms (ECG) for all children’s at birth … doctors ask yourself how many children per year get injured in mainstream medical procedures and operations?
So along the same lines, if you were in my shoes you would find a way to make it work too. We have no choice and neither would you. It’s ok if you don’t know what to say to parents. I appreciate the honesty.
Doctors I want you to know that parents refuse to settle for their brain injured children’s even when medical professionals are asking them to. Doctors, nurses, therapists, surgeons and alike can offer their medical opinion here on my blog but that doesn’t mean that I and others parents have to agree. Remember, at one point we ( parents of brain injured children’s) were told our child wouldn’t make it and they did. We were told that our child would never walk, talk, eat etc and most of our children do. So when we are being asking to settle for our child, we just won’t. If I had settled, my son most likely wouldn’t be where he is today. I want my child to have the best life possible! If I can help some parents on my way to helping him, they are welcome to my blog….
I want you to know all parents of brain injured children’s worry A LOT. I worry when my son sleeps ….Will he die overnight in his sleep from his heart syndrome ( even if we have confirmation from Cardiac rhythmologtist that his 5th ablation for WPW was successful) when I am sleeping?
How do I prove and collaborate with the school system so my child gets the appropriate education with the right accommodations? And whether the administration will deny these accommodations?
How do I protect my child from the cruel world that wants to judge him?
My son is a survivor of anoxic brain injury ( statistically 4% survival rate from out of hospital cardiac arrest and of these ONLY 12% are not in vegetative state like my son). And I am convinced HBOT was for him a big help! Me and my husband we are a survivors as well….We have seen things that no parent should ever see. We have heard things that haunt us daily from mainstream doctors!
I really hope that you never have to experience watching your child suffer from any type of brain injury but should it happen, know that there are other parents just like you.
And that you are welcome on my blog.
Svetlana
Mother of Marc