If I am honest with myself, I will admit that Ehlers Danlos Syndrome frightens the shit out of me. I try not to think too deeply about the long term prospects this disorder has for my children and my grandchildren. I am generally an optimist who doesn’t belive in worrying about things beyond my control.
But.
Some days an icy hand of fear just grips my heart and squeezes tight.
Some days the fear sits heavy inside my head pushing out all thoughts, except for the ones that tell me that I am afraid. I am afraid for my children, afraid of their choices. Afraid of the possible consequences of their choices, afraid of fear itself.
My fears which are the normal fears of a parent are magnified by the loss of my Mother and by the challenges assosciated with living with Ehlers Danlos. This post written by Achelois, gives me a glimpse into a possible future for my daughterVeronica and whilst it scares me witless, I know that Veronica is a strong young woman who will cope in her own indomitable way.
My son David had a dentist appointment yesterday. Pre-EDS, Dave would have just walked to the dentist from school, had his fillings and then gone back to class.
Post-EDS it is a whole different ball game.
David had to be assessed by a senior dentist in Hobart to see if it was safe for him to be treated at the small local dental clinic. The senior dentist needed a copy of Davids echocardiogram report and so it took nearly four months of to-ing and fro-ing before it was decided that yes, Dave could be treated at the small clinic which is attached to his school. But, he needed to have a preventative dose of antibiotics an hour before his treatment.
I don’t know exactly why David needs the antibiotics before his dental work, it is something to do with either his heart or his lungs. The Spouse took the phonecall from the dentist and didn’t ask why, he just wrote down Dave’s appointment times.Gah.
David’s Echocardiogram shows that he has mild pulmonary hypertension and the right hand side of his heart is enlarged. He is fifteen.We have an appointment with a cardioligist in September and I am trying not to think too deeply about the implications for my son until then.
But again that icy hand of fear is giving my own heart a bloody good squeeze.
As I was sitting in the waiting room of the dentists, trying to ignore the crap on the tv, I was quietly worrying about my son. I was hoping that the dentist wouldn’t accidentally dislocate David’s jaw.Possible scenarios and implications of a dislocated jaw played through my mind, all I needed was a brunette mournfully wailing for Heathcliffe and the melodramatic scene in my head would have been complete.*Sigh* I have a very vivid imagination.
David’s jaw didn’t dislocate but it became very clicky during his treatment and they want a senior dentist to have a look at it, at Dave’s next appointment.
I know that Veronica has her own fears, regarding the health of her children but at least she is spared the soul destroying doubt and disbelief, shown to me by the medical profession as I struggled to convince someone that my daughter really was ill and not faking.
Since Veronica’s formal diagnosis of Ehlers Danlos Syndrome earlier this year everything has become much easier,well much easier within the medical system at least. That little piece of paper from the geneticist means that Veronica doesn’t have to fight to be taken seriously.Her children are being closely watched by the paediatric team at the hospital and there are protocols being put into place for them. YAY.
Isaac’s E.C.G showed a lovely, perfectly healthy heart. Perfect perfect perfect. That is one less thing to worry about and I can prise back one of those icy fingers.
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Fear is a very poewrful thing. Know that we (your readers) are here for you. So very glad to hear that Isaac’s ECG went well.
Sending positive thoughts. I hope they help cancel out the fear.
Fear makes your knees give way and your spine quiver at the very time you need to stand up straight and fight! You’re a tough bunch and now that the diagnosis is out there at least there no more ‘nothing wrong with them’ crap to contend with. So glad that Isaac’s ECG went so well. Fingers crossed for the EEG and Amy’s tests to come. Hopefully Nathan’s genes are dominant here 😉
The “I don’t know what is wrong, and no one is listening” has now become everyone listening and thinking of all the possible possibles because of this breakthrough Veronica had with the specialist. I didn’t realize David had this as well… and Amy and Isaac, perhaps. I’d hate for you guys to have to go wayyyy into specialists for every little thing… but so glad at least they’re listening now.
:[ Mixed feelings for you and I don’t know what to say.
I just read Achelois’ post and I’m agog.
I had no idea.
Back when I was a dental assistant, the antibiotics pre-dental visit were for heart. Mostly people with heart murmurs. In the event of a scratch inside one’s mouth would allow in bacteria that could cause infection that could travel to the heart. But that was 798 years ago.
The clicking jaw may just be temporary – from the treatment. Has he had braces on his teeth at any time? Elaine has braces and now is battling with her jaw at the age of 23. She is now going through a slow process of moving her jaw by means of a gum guard-type-thing and then braces again. Has has the top set for about 6 months now and is ready for the bottom. Whole process should take about 3 years – but we didn’t want the operation which causes problems later in life – so we’ve heard.
Let’s hope his clicking jaw has a simple solution. You definitely don’t want that worry added to the heart thingie!
Oh being a mom sometimes sucks, hey? Life is never simple anymore! You just feel like stepping off the world for a while
Just to add the typo error – “Elaine ‘had’ braces ..”
Please don’t take this the wrong way….David is such a big-hearted boy. I hope there is a treatment that helps his heart.
I would be terrified for my children too. All you can do is be there for them, and help whne they need it and you are definately doing that.
You know they are brave though, and at least they (mostly) know what they are dealing with which is better than how things were before the diagnosis.
Oh love, thank you for your support when you’ve got all this going on as well. Shall we lean on each other? I had no idea having children would be so heartbreaking.
Well done to Isaac though. What a good boy he is!
There’s no sense in being afraid. You just deal with it – one day at a time. It’s all you, or anyone, can do.
The antibiotics are for his heart, just as the dental assistant said above. I will be interested to know what the cardiologist says about David. I am in awe of how you have battled for your children.
Good vibes coming your way, and indeed, Lou is right. Just take it one day at a time. You did have some good news too eh?
Oh, man. Nobody ever tells you how hard it is to have kids. We all assume we are going to have perfect wonderful happy smily kids. Then reality bites us in the ass.
Maybe the weather will get better…a few days of sunshine would help. Things always feel worse and more depressing when it’s endlessly gloomy.
hugs. Julie
Hugs, Kim.
Ivy has PH too and it IS scary.
It’s all frightening when it comes to your kids.
No advice or words of wisdom just complete understanding of the way you feel.
Oh my post wasn’t meant to cause fear. I am so sorry. If it helps that was a very bad day. This week med’s have worked well and I am just bendy with a grandchild to keep me laughing. Also am just about to get checked out for menopause so some symptom worsening may be because of that. Life is good despite the EDS – others have so much more to endure. This disability makes one resilient and that helps so much. Also the earlier the diagnosis the better for the individual so these days when parent’s know about it they are informed unlike mine were all those years ago. There is hope and a strong EDS community. Achelois xxxx