Ehlers Danlos Syndrome

A gluten free zone.

by frogpondsrock on August 31, 2009

in Amy,Ehlers Danlos Syndrome,food

Gluten is evil. Well in regards to my granddaughter Amy, gluten is certainly the enemy.

I will start at the beginning for those of you out there amongst the interwebs not able to read my mind.

Veronica was reading a blog post where the writer was describing her daughter’s behavioural changes when she ate anything with wheat in it.Tantrums, mood swings, manic behaviour and meltdowns.Yet again the blogosphere provided a light-bulb moment for Veronica as the writer could have been describing Amy.

Veronica rang me and told me that she was thinking of eliminating all wheat from Amy’s diet. During the course of our phone conversation, I pulled out half the contents of my pantry and we examined the ingredients. Massel stock cubes are gluten free yay, but homebrand french onion soup is chockers full of the stuff. Spring Gully worcestershire sauce is good, Holbrooks is bad and so it went on.

I found gluten in some very unexpected places. There is wheat in marshmallows. The sneaky fuckers! I was going to make rocky road for Amy’s birthday. Gah!

Fast forward a few gluten free days.

Yesterday Amy stayed with me for a few hours and the change in my granddaughter is very obvious. Amy was much, much calmer. We still did all the things that we normally do but we did them much, much, much slower.

Normally Amy has me tearing about the place at breakneck speed. Feed the fish.Look in the cupboards. Check the chooks.Collect the eggs. Cook the eggs. Throw the ball for Harry.Play in the dirt. Look for tadpoles. Eat the beans in the garden. See Poppy. Run in circles. Come on Nanny chase Amy! etcetera, etcetera, ad infinitum.

Generally after spending a few hours with Amy I am exhausted, happy that we had fun together but totally exhausted. Yesterday after I waved goodbye to my granddaughter I compared notes with The Spouse and we both agreed that WOW, there was a marked difference in Amy’s behaviour. And double Wow I also,wasn’t completely knackered and in desperate need of a nanna nap. *cue applause.*

The most exciting behavioural improvement from my perspective, was that Amy allowed me to correct her speech. Previously when I  would correct her speech,Amy would sometimes listen and sometimes not. Yesterday she not only listened to me but she practiced her pronunciation with me, until she had the tricky word down pat. I am thrilled to bits.

Gluten is now the enemy.It also seems that there is a link between Ehlers Danlos and food allergies or intolerences. *sigh*

Also whilst we are on food related issues, my friend Barbara has just discovered her 22 month old son is allergic to peanuts.

Our issues with gluten aren’t life threatening and the changes needed are fairly easy to implement. Gluten wont send my Grand Daughter into anaphalactic shock it just sends her into meltdown mode, but it does mean a re-think on the foods we eat and it looks like  I am going to have to add a whole lot of new sites to my reader.

So my lovelies that was my weekend, How was yours?

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Fear.

by frogpondsrock on August 27, 2009

in David,Ehlers Danlos Syndrome,Family,Veronica

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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Ehlers Danlos Awareness Month

by frogpondsrock on May 11, 2009

in Ehlers Danlos Syndrome,Veronica

Hi all. It’s Veronica here, guest posting for Mum. Or more correctly, copy/pasting my  recent post into her blog so that this info is over here too.

*****

It’s EDS awareness month, which I am doubting is taken seriously enough in Australia. Goodness knows that doctors everywhere seem to be hideously undereducated about EDS.

We are not freaks. Not all of us can contort ourselves into a tiny little package, nor does ‘skin involvement’ necessarily mean that we can stretch our skin great amounts. My skin involvement is simply a bunch of stretchmarks showing up for no reason at all and getting worse, despite me not gaining any weight, the worst of them are at the back of my knees. I injure easily, take forever to heal and my scars stay purple for ages, before turning silver and widening/raising (there is a medical word here that I have forgotten). Also, you can generally find bruises all over me, even if I haven’t done anything to myself. My most recent ones were on the back of my hand (seriously, wtf?) and an orange sized one on the back of my calf. I’m also stretchy in my skin, but with everything else, it seems like nothing much. Sigh

Most of us don’t even realise we are different when our fingers bend back further and our elbows hyper-extend. I showed my brother a photo album of EDS photos the other day, only to have him reply ‘What’s so special about that? And that? And that one?’ Well nothing, IF YOU HAVE EDS. If you don’t, you’re left looking at the flexi people and thinking, ‘that looks like it hurts.’

I think one of the most common misconceptions about EDS is that our dislocations don’t hurt. Unfortunately, our dislocations DO hurt just as much as a sport/injury induced dislocation that you might have suffered. Even more unfortunately, our dislocations happen more easily and more often that normal people. It’s just the way it goes.

There is a huge range of abilities within the same EDS spectrum. Some people are only very mildly affected, while others may experience worse symptoms and be unable to do everyday things.

I suppose that it makes sense that I am having a crash* in the middle of EDS awareness month. What better way to make everyone aware than feeling like shit for a while? Not a very pleasant way, unfortunately.

Oh well. I do know that a bunch of Tasmanian doctors are getting a crash course in EDS management simply because of my diagnosis. Like BendyGirl said, if me getting a diagnosis helps just one other person going through what I’m going through, then it’s worth it. It sucks, but it sucks more to be told it’s all in your head.

Video via BendyGirl.

To find out more about EDS and HMS (Hypermobility Syndrome), you can visit here or here.

*A crash generally happens when I’ve been pushing myself too hard. Getting over one pre children used to leave me in bed for a week, just sleeping and resting. Post children is a slightly different matter, as bed rest is something hard to come by. I reckon this crash is just caused by 4+ months of sleepless nights catching up with me (late pregnancy is not conducive to sleeping through the night any more than having a newborn baby) and keeping the household running/fed/clean(ish).

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Veronica…

by frogpondsrock on December 11, 2008

in Ehlers Danlos Syndrome,potential insanity,real life,Sadness,Veronica

My daughter Veronica is twenty years old and for those of you who don’t know her, she is the author of “sleepless nights”

We have been on a bumpy journey together, these last 7 years, my daughter and I. Not a typical Mother Daughter journey through the minefield of teenagerdom. Not by a long shot.

This is hard to write because the story is so long, so full of heartache, frustration, fear, anger, lots of anger and finally a numb acceptance of, “Well this is how things are going to be, best just get on with it..         “So I will just outline the bare bones of our story for now..

In february 2002, when Veronica was 13 she complained of a sore hip, bursitis was the initial diagnosis and Von ended up on crutches for a few weeks. Then Vonnie had a fall at school, hit her head and developed a headache that just wouldn’t go away. Veronica was then struck down with a mysterious virus that had the identical debilitating symptoms of glandular fever. Veronica was very very sick.

So with my teenage daughter experiencing painful joints, a constant headache, nausea, night sweats, general weakness and malaise, I was beginning to become very worried. The best description that I can give of how sick Vonnie was, is for you to imagine Ross River virus/glandular fever/lupus all at once.

It was about this time (April or May) that we jumped onto the medical roundabout and at the end of the ride I had formed the opinion that most doctors are twats. In my more furious moments at home, I would refer to the specialist of the moment as a ‘stupid fucker’, ‘condescending shithead’ and other terms of endearment…Veronica has written about this here in a post aptly titled, “I dont look sick.”

At the end of 2002 after all Veronica’s blood tests had returned as normal. We were told that it was Chronic Fatigue Syndrome and to go home and “Deal with it”

And deal with it we did. Veronica was always a high achiever at school and she didn’t let a little thing like a chronic illness stop her from participating fully in all the stuff that her school had to offer. She was a straight A student who played sport, was in the physically demanding, Rock Eisteddfod and had  an active social life as well as a good lot of chores to do at home.

In her final term of year nine, after a few months of being reasonably well, Veronica became really ill again, with terrible joint pain, headaches, nausea and a grinding fatigue. Our GP prescribed something for migraines and told Veronica and I that it was a CFS flare-up and we should expect them from time to time.

So Veronica went back to school, thinking that it was a flare-up and tried to make the best of it. When in fact she had contracted glandular fever.

Writing this now  years later I can’t believe that my 14 year old daughter went to school with glandular fever and still managed  to ace all her subjects.. *sigh*

Seven years later we are still no closer to getting a diagnosis for Veronica.

Until Monday.

On Moday I took Vonnie to what we thought was a quick trip to a physiotherapist  to get a brace to support her pregnant belly. Here is a chunk that I have lifted from Vonnie’s blog post describing the physiotherapist’s reactions to Veronica..

According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.

So.

We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.

Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.

My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.

I got put in the ‘too hard’ basket.

So, finally after nearly 7 years some things are starting to gel. Some pieces of Veronica’s health puzzle are falling into place. We are off to our GP again tomorrow  and Veronica is going to discuss the possiblity that she might have EDS. Ehlers Danlos Syndrome..

I am a tad worried now…

To be continued……..

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