Ehlers Danlos Syndrome

Food, eating and broken tongue ties.

by Veronica on March 11, 2010

So, my son. He of the not swallowing and the tongue tie and the issues.

He turned around the other day and poked his tongue back out at me. I was stunned, in a good way. I prised open his mouth, which was harder than it sounds, and checked. No tongue tie. The frenulum that I used to be able to see easily, gone.

I don’t know if he bit it, or snapped it somehow, but it’s fixed. Suddenly, instantly, he can swallow properly and poke his tongue out. He is talking heaps more and trying to have conversations with me. The issue now is trying to work out what the hell he is saying before he gets frustrated with me and gives it over to yelling or screeching instead.

It’s insane.

It’s fantastic.

He took 2 steps the other day too. Wobbly ones and after two steps he threw himself at me, content that I would catch him. I did and we giggled. He is still very wobbly and can’t manage any more than 5 seconds standing unsupported.

Now that he is standing alone though, I’m noticing more issues. His left foot turns out, badly. Like, 90 degrees badly and when he steps, it doesn’t straighten.

With my untrained eyes, it looks like the turn is coming from the hip, but I’ll ask the physiotherapist about it next time we see her. I don’t know what impact it will have on his walking, but to be honest, I’m not expecting him to walk any time soon. It’s enough that occasionally he lets go with his hands, and walks holding my hands. Both things that Amy was doing at 11-12months. And I KNOW that you’re not meant to compare, but really, I can’t exactly compare him to ‘normal’ children with their development, can I?

Can we just come back to the fact that he is swallowing? Properly? Thank GOD.

***

In unrelated blogging news, I’ve been updating my food blog again, after months of …. um …. not. I’m enjoying it and maybe you will too.

There are new posts up on the other blog. I mean, one new post. You’ve probably seen it already. [yes, this is me telling you to go read my other blog. now. make me feel better about the lack of readers over there, okay?]

Also, I want to address the sponsored posts issue. Yes, I’m doing sponsored posts here for Nuffnang. Mostly because being a poor penniless writer doesn’t appeal to me and Nuffnang doesn’t pay badly. Funds are tight here, Nathan is my full time carer, so he doesn’t work at the moment. That might change as the children get older, but my body is failing and I need him home. So any money I bring in from writing goes towards the household and things like that.

Sunday, I will be announcing the winners of my advertising competition. Maybe sooner – I’ve made my decisions and some of you have been notified already and some haven’t. Please, bear in mind that if you didn’t get a free ad spot at this time, I will probably be offering spaces again in a month. And I love every single one of you who entered, so thankyou so so much.

So that’s me! How have you been?

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Facebook and Ehlers Danlos

by Veronica on February 22, 2010

in Ehlers Danlos Syndrome, Life

There is a copy paste status going around on Facebook that makes me want to gouge my eyes out.

Paraphrasing:

I love my body even though it’s changed through child birth, every mark, every scar, it’s a sign of my children and etc etc etc. Copy paste this if you’ve had children etc etc etc.

Lovely sentiment and I can totally understand why women are copy pasting it to their status. Affirmation that even though childbirth has changed your body, you are an amazing woman for it.

And you ARE. My GOD you are. You’re amazing, you created another human being. That right there is amazing and you should be proud. If I see the copy/paste thingy on your status, I promise, I won’t even be tempted to throw stones at you.

But reading that status makes me bitter.

Maybe because after 2 children, I’m not all that changed? I don’t think childbearing has taken it’s toll on my body all that much – except for how much bendier I got.

And yet, I am broken and battered still.

If my war wounds were a result of my children, I would bear them proudly, I would stand up and I would shout from the roof tops how proud I was of my body.

Yet, my elastic skin that tears at the drop of a hat, that wasn’t childbirth. The stretchmarks on my stomach, while exacerbated by pregnancy, weren’t caused by pregnancy.

The bruising on my legs, the livedo reticularis that means I can’t wear skirts, my battered broken bits –

Not a one of them I attribute to pregnancy and child birth.

Every. Single. One. of the things I dislike about my body is caused by Ehlers Danlos Syndrome and that makes me bitter.

I can forgive the visual changes – really, I don’t mind how my body looks, even though it’s different. It would have been different anyway, no matter what.

I dislike my body, often, even though I don’t have body image issues (in fact – 2 children later, I am quite proud of how I look).

But.

I hate how I can’t bounce out of bed without checking that all of my joints are in place.

I hate that I can’t walk across the room without tripping over, or walking into a wall, or having to think about every step and judge where everything is by sight, because my feet are stupid and don’t work very well.

I dislike that I have to think consciously about how I move.

I hate that pouring the milk for my cup of tea this morning dislocated my wrist.

I hate the fact that my ribs won’t stay attached to my spine like they should.

I don’t like the way my skin tears, just because it feels like it and then takes weeks to heal. I dislike the bruising that makes me look like a victim of domestic violence (although, am grateful, my face rarely bruises unless I actually walk into a door).

I hate that I am 21 and move like I am so much older – feel like I am so much older. I hate the pain and the exhaustion. My word the pain. My joints slide around like butter and while my smaller joints don’t leave me screaming, it doesn’t mean they don’t hurt. We won’t even talk about how my teeth hurt from the clenching.

I am bitter about how the EDS has changed my body and I dislike that I can’t love myself in it’s entirety, when really, I’d just like a trade in. It can look exactly the same, just someone replace my fucked up genetics and collagen PLEASE.

Bleh.

I’m just feeling crappy and wishing my only issues were visual ones caused by childbirth.

[Again I state that if you copy pasted that status to your Facebook, I am not having a go at you. You are amazing, you created a human being and you should be proud of every single mark it caused. I am just bitter that I am broken and hurting.]

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Have Your Say: Food Issues

by Veronica on February 3, 2010

in Ehlers Danlos Syndrome

Okay, so here is the deal. I want to start doing a ‘thing’ where I’ll talk about something and you can all chime in with as much advice as you like. Normally mothers get annoyed about unsolicited advice, but this time, I’m asking for help.

Also, I will be about in the comments, so if you want to ask something and have people chime in, even if it’s just to say ‘my kid did that too and grew out of it’ then please, do so. We’ve got a community built here, we may as well utilise it.

****

Now, on to my issue:

Isaac, he doesn’t swallow food. I feed him and he chews the food, but doesn’t swallow, just spits it out again once it’s chewed.

If I give him pureed or mashed food, he might swallow a mouthful maybe, before he realises that I’ve deposited it in his mouth, but mostly, he’ll spit it into his hand and try to feed it to me. Failing that, he’ll just drop it. He’s not a fan of spoon food.

If I feed him finger food, which is his preference, he chews it and then spits it out without swallowing. I can give him half an apple and come back and the apple will be gone, but really, the apple is sitting in a giant circle of chewed pieces around him.

Peas, well, he’ll eat a few peas, before chewing and spitting the rest. The same for most of his other vegetables. Actually, considering I don’t count the peas, he is probably just chewing and spitting all of them. I haven’t seen any come out the other end.

He will eat soft fruit: cantaloupe, watermelon, pears, nectarines. He won’t eat the skin of nectarines or pears and once he gets near the skin he starts spitting. If I peel them first, he still mostly spits the food out.

He will drink milk or water from a bottle or a sippy cup. He is down to 1-2 breastfeeds a day and as of right now, I haven’t breastfed him for 15 hours and I’m not likely to feed him again for another 12 or so hours.

He doesn’t appear to be losing weight, but I don’t have any scales here to check if he is gaining weight either.

He is drinking a full bottle at bedtime and naptime, but I know he is hungry when I give him solid food to eat, so it’s not a hunger issue that I can see.

Oh and he is just over 12 months old.

My questions:

Does anyone else’s child do this?

Does anyone have any good ideas that I can try, to get him to start swallowing the food?

And, to my readers with experience in Ehlers Danlos Syndrome – do you think this could be EDS related? We don’t have another specialist Paeds appointment for another five months, but if he continues to not swallow, I’m prepared to push for an earlier appointment.

Finally: Does anyone else have any questions they want answers to about kids and food? If so, leave them in the comments section. Commenters, read the comments, someone might be dealing with your exact same issue. This might work really well, or it might flop. Frankly, if it helps me get Isaac actually swallowing solid food, then I don’t care.

Kids! Sheesh, but they’re stressful.

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Additions

by Veronica on January 27, 2010

in Animals, Ehlers Danlos Syndrome

I did tell you on twitter that this wasn’t all that exciting, just exciting for me.

You know what you need to do when life is stressful? You need to add more things to the family, so you don’t have any time to worry about anxiety or panic attacks.

So would you please all welcome Susie, the newest addition to our family.

Please, ignore the fact that my feet are purple in that second photo. I’m a bit EDS-y lately.

Susie’s Mum was a Springer Spaniel x Border Collie and her dad was a purebred Springer Spaniel. This is the closest to a purebred dog I’ve ever owned in my LIFE! Normally I go in for mongrels (like Seven, she’s a terrier x daschund something mix), but Susie needed a home when I needed a puppy, so here she is.

I suspect we’ll have a bunch of OMG puppy stories coming, but for now, she has fit in really well. Seven is following her around, doing nothing but wagging her tail and trying to lick her.

The cats however, they’re not too keen. Both of them still look a little like I plugged them into an electrical outlet. They’re going to be sulky for weeks and I fully expect a display of decapitated birds to be awaiting me when I feed them tomorrow.

Hehe.

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Happy Birthday Isaac!

by Veronica on January 18, 2010

in Ehlers Danlos Syndrome

Dear Isaac,

It’s been a huge year little boy. You spent your first few weeks in a sling, coming with me to doctors appointments. Your great-grandmother had cancer and we were part of her support team. She was in hospital when you were five months old. We sat there, waiting to speak to the doctor when you began to scream. And scream and scream. You got to spend a night in hospital that night. We still don’t know why you screamed, although I have suspicions.

Nan died a few days after your hospital admission. You were in the room with us when it happened, fast asleep in your pram. I’m grateful for that, that you were sleeping.

You had a seizure when you were 6 months old. We spent yet another day in Emergency with you, only to be sent home. Luckily you haven’t had another one. The six months since then have been a whirlwind of doctors appointments, geneticists, tests and more tests. You’ve been diagnosed with Ehlers Danlos Syndrome and been poked and prodded and shown to students.

You’re my happy boy, always smiling. You’re a bit grumpy this morning, but that is what you get when you spend most of the night awake. You’re still smiling, you just want to be doing it from the safety of my arms.

You still don’t sleep through the night, or sleep much at all actually. I’m going to blame genetics for that, your sister didn’t sleep either and neither did I. Or your grandfather for that matter. It could be the Ehlers Danlos; actually it’s highly likely it is, but we’ll never know as you can’t tell me.

You crawl so fast, especially when you think you’re missing out on something fun, or food. You like nothing better than launching yourself at your sister, only to have her scream ‘Isaac is going to GET ME!’. You giggle and I have to rescue her, as you try to pull her hair, or squash her flat. She’s not very rough and tumble and yet, you are.You don’t walk yet, although we’ve had moments when you’ve forgotten to hold onto anything and stood by yourself for a few moments. I’m not worried about the lack of walking, not at all. With your bendy bits, walking is too hard for you right now. You will do it when your legs and body are ready and that is fine.

Isaac, we’ve got an interesting road ahead of us as you get older. I’m not looking forward to seeing how the EDS manifests in you and your sister. I spend a lot of time hoping that you’ll only ever have a mild hypermobility, but then, I’ve seen your skin tear and I may be kidding myself.

When it comes to food you are SO there. Any and all food, you don’t care, so long as you can feed it to yourself. You’re gluten free like your sister, as gluten causes you terrible eczema. You’re off to have (genetic) blood tests for coeliacs tomorrow and I suspect that is going to be great fun, pinning you down for a needle.

Your favourite things are wheels and buttons, although I suspect boobs come in very close. We’re slowly weaning, cutting out feeds left right and centre. I wouldn’t be so adamant that we needed to wean if you didn’t keep biting me. Biting is not pleasant. Laughing when I tell you no, even less so.

You’re getting so big and I’m not entirely sure where the time has gone. It passed in a haze of appointments and grief and busyness. It’s been a hard year this year and it’s still hard. You’re always ready with a snuggle and a hug though and for that I am grateful.

Happy Birthday baby boy. You’re my handsome boy, my beautiful happy child. I love you more than life itself and I would do anything for you, even when you do bite my nipple and stay awake all night.