We had a Paediatric appointment today, for the children. We left with a barrage of referrals for various specialists.
In no particular order,
– A referral for both children to see a Geneticist and be officially diagnosed with Ehlers Danlos Syndrome.
-A referral for an Opthamologist to have their eyes tested, as EDS can cause eye issues.
-A referral for them to see a Paediatric Physiotherapist so that we can help prevent problems before they occur, as well as making sure Isaac is developing at a normal rate.
– A referral for Isaac to have allergy testing to try and hunt down the cause of his weeping bleeding eczema, that incidentally cleared up when we stopped eating all gluten. So we’re suspecting gluten is the cause, but testing to pin that down.
-A referral for Amy to have an ECG to establish a Mitral Valve baseline.
And finally, last but by no means least,
– A referral for Amy to have testing done for Coeliacs Disease.
It’s that last one that has me wandering around muttering ohgodohgodohgod. Because to test for Coeliacs Disease, she needs to be eating gluten for 3 weeks before the blood test is done.
The blood test is scheduled in 3 weeks. She had her first piece of bread today.
I’m fucking terrified. Do you have any idea how bad it is here when Amy is eating gluten? She has meltdowns and tantrums and ohmyfuckinggod.
Three weeks.
I can’t shake the feeling that three days into this, they’ll be admitting me to a nice quiet padded room somewhere.
Saying I’m terrified is an understatement.
She’s not a nice kid when she’s eating gluten.
Scratch that, she’s a demon hell child when she’s eating gluten. Her eyes glow red and her head spins and she screeches with a voice that could make small animals die.
This is not going to be a highlight of my life.
On the upside, bread! And dip! And like, bread! And stuff.
Eat the bread and dip Veronica, then put in your earplugs and hold tight to what’s left of your sanity! That doesn’t sound like a whole heap of fun!
Three weeks, it’s not a long time really . . . . not if you say it fast. Will be thinking of you all. The assortment of tests will take up some of the days . . . not much consolation I know but at least you will have some options once the results are in.
Big hugs.
Twenty one days sweetheart. Today was day one, so really there are only twenty more days to go. And her eyes do not glow red, it is more of a burnt orangey lava colour.
Oh god. Coeliacs Disease. I hope she doesn’t have it.
Good luck for the next 20 days, count it down on your calendar to keep sane. I really hope she is ok and hope Isaac is developing at a normal rate.
Wishing lots of luck.
Three weeks? Why so long? Can’t they see the difference and test after only one? Does it really take three weeks for the gut to show the symptoms? I know the others have said three weeks isn’t all that long, and in the big scheme of things it isn’t. But when you are living through it daily with Amy it can seem like forever, especially since you’ve seen how she is without gluten. But right there, Amy without gluten, there’s something to look forward to. hopefully the gluten is Isaacs problem too, then he’s easily enough fixed by following Amy’s new diet. If it’s another problem that will mean lots more testing. Nobody wants that I’m sure. I’m glad though that you’re getting all this done. Everyone will be better off in the long run.
Oh gees that seems like a long time of cruel and unusual punishment for all of you…. go stock up on all the gluttonous choccie biscuits and just sit in the corner eating and rocking!
Sending you lots and lots of Supermummy Juju.xoxoxoxo
sending lots of luck to you..
am here if ya need..
hoping for all good news..
I feel for you – we waited 13 months to see an immunologist and then my 6 foot tall then 14 year old went for three weeks eating gluten with horrible brain fog and gut symptoms (and trying to cope with high school work load) and he totally freaked on the day and wouldnt take the blood test! 6 months later and he still hasn’t had the blood test…sigh
Every time her head spins and she crawls down some stairs backwards just eat another slice of delicious sourdough or foccacia and escape to a happy place.
Good luck, my thoughts are with you 🙂
I hope all the appointments give you answers and a positive way to move forward (hugs)
Hope the next 20 days pass quickly !
I get horrid weeping/bleeding excema whenever gluten creeps into my diet. I think its a skin problem actually found in coeliacs. Or siomething. Flu is not helping my brain. Is Amy having the biopsy? I decided it wasn’t worth doing (as did my GP) as it was fairly invasive & we knew the answer anyway.
Maybe use this 3 weeks to binge on all the lovely wheaty/gluteny things you won’t be able to have afterwards…if you’ve got to experience the hell, might as well enjoy the eating! Hope it helps your pain levels when you go back gluten free, I find it makes a huge difference.
Thinking of you all, XXx
hopefully you’ll have a bit of peace before all hell breaks loose – if they have to wait 3 weeks to test, then maybe her, um, issues will take that long to manifest?
XXOO
I don’t envy you. It’s going to be a tough three weeks but at least you get to have BREAD for the next few weeks. Enjoy the gluteny goodies while you can!
!! That’s crazy! Why do they need to do that? SOMEtimes these doctors make no sense. Hope you guys survive well as I’m a bit far to help out. ?? :[
I suppose it would be wrong to remain drunk for the next three weeks?
Sweet baby Jesus. I’m honestly AMAZED that they would have her go back on gluten after you’ve obviously already discovered that having her eat gluten morphs her into Wild Child.
Good luck, lady! You know where to find us if you need to vent! 🙂
xoxox
Hopefully it’s something less bad, like an intolerance, or an allergy that they can grow out of. My diet the last couple of weeks has consisted of meal replacement shakes (think slim fast) and fruit and nuts. Practically anything else feels like I’m eating concrete.
I was tested for allergies once, and they found I was allergic to all grain products, all dairy products, anything canned, smoked, cured, processed, dried, and certain fruits (strawberries) and chocolate. After about 2 weeks of not eating anything I was allergic to, I slowly started intoducing foods again, and the only thing I seem to have problems with are strawberries and chocolate (I can only eat strawberries if they’re very fresh, and I can only have dark chocolate{which is my favorite kind anyway}).
After the three weeks are up, you should book a vacation… somewhere with padded walls, and those nifty jackets that keep you from ripping your hair out…
Oh fuck. I think you need to go on vacation. Alone. For the next three weeks.
Three weeks…argh… But, you can do it! Good luck.
wow, that’s a lot! deep breaths…
Wow that’s hectic!
& here I was stressing out again about the amount of Docs I get to visit with mine. Reality check for me!
Think I agree with Miss Ash, perhaps it’s a case of Mum knows best – you’ve already worked out on your own that gluten is the issue. I know Drs are just covering all the bases & looking out for Amy though, & it never hurts to get a professional opinion anyway.
3 weeks isn’t long in the scheme of things, & I think you’re doing a good thing getting all this testing done while they are so young & won’t remember (well that’s what I’m hoping with mine anyway!)
Good luck with everything.
Oh, & totally agree with Robin G. too! 😉
Will be thinking of you.
Really.
I know all about that test and the effects of gluten.
So hugs and ear plugs coming you way.
Hope you both get through it okay.
I remember running Lainy through all the various EDS type tests last year – just making sure she was ONLY Type III – Hypermobility. So glad to be done with it, although the doctors still recheck EVERYTHING before they do anything to her. Not that I blame them. She makes ALL of her doctors nervous.
I’m glad you’ve got your referrals in hand, hope you survive the next three weeks until the Celiac test for Amy and I sure hope it dries up outside so that your house doesn’t float away!
Oh good luck. That is all I will say and enjoy the good food you get to eat for now.
Been there, done that, got the t-shirt and bruises as souvenirs!
Thinking of you, hope all goes well (((hugs)))
Sounds like you will need that yummy gluten to calm your nerves. Sorry you’re going through this.
Do you have to test for it? Isn’t it obvious enough that she has it by her severe reaction to gluten? Just wondering what good it will do to put you… and her body… through three weeks of hell.
worth it in the end.
chant that to yourself.
thinking of you. our family just has the intolerances, no celiac. glad you are finding out now, sorry for your 3 wks of hell!
Is there no other way to test for Coeliacs? Isn’t there a saliva test for it, for example? Why do you have to go through hell for 3 weeks? This just doesn’t seem right.
OK now listen all of you with the “doctors are crazy, there must be another way to test, why so long” … There isn’t another way, and 3 weeks on gluten is the bare minimum for villous atrophy to show up on biopsy and the antibodies to show up in the bloods, which is the ONLY definitive way to diagnose Coeliacs. I speak here as a Coeliac myself, and parent of a Coeliac child, and someone who read every bloody thing I could get my hands on *hoping* that there was no need for the gluten challenge – but I’m sorry to say, there is a need. Doctors may often like to torture us for no apparent reason, but this is not such a case.
None of the foregoing should be taken as abating one jot of my profound sympathy for you, V, as I know what you’re about to go through and it is hell on wheels. All I can offer is, at the end of it you’ll *know* if she has Coeliac Disease or not, and knowing is much better than not knowing. Also, Isaac’s skin condition sounds to me like a textbook definition of Dermatitis Herpeteformis, which is a side effect of Coeliacs. Fun times at the ranch, indeed 🙁
Thinking of you through this three week ordeal and hoping you get good news at the end of it (if it’s an allergy rather than Coeliacs, she may grow out of it in time, so a nil diagnosis on Coeliacs would be a good thing).
I’m not an M.D., but do you really need an official diagnosis? Could you just go with your gut, so to speak, and stay away from gluten without going through the next three weeks just to get someone to tell you what you probably already know?
Yikes! Hold tight – thinking good thoughts for you.
I’ve been thinking about you since reading the comment you left on my blog yesterday. I hope you’re hanging in there and that Amy is okay. I think you’re one strong woman to handle all of the things you’ve got going on right now.
You’re absolutely right, Kathy, a definite diagnosis is better than just assuming or guessing.
Wow, glad you’ve got all those referals – it will be good for you to have some concrete information to deal with but oh my god, 3 weeks? Best of luck with that.
I think the “it will be worth it” mantra is probably quite key and also stocking up on (and hiding so only you know where it is) some quality chocolate.
Thinking of you.
Ugh. I’m so sorry. I think you deserve extra rich dip for sticking it out. I hope everything turns out well at the end of this.
Oh honey, I’m holding you tight in my heart. I could comment on each point you make, but I won’t. Just know that I know this is so hard for you and I understand. For each of us it’s a little different, but overfuckingwhelming is universal.
Hang in there! My Stepmother has Coeliacs and she is what sounds like a 50 year old version of Amy, glowing eyes, tantrums and everything, she can eat a slice of garlic bread without thinking about it at dinner and will be feral for the next week!
Almost two days down, only nineteen left to go!
So I’m confused, they do have EDS? Or you are thinking they do?
Sorry, it’s late and I’m not too bright right now 🙁
Hang in there, it’s six more days now. I hope it will have been worth it when you look back on this.
Just popping over after a link from your mums blog.
Another blogger I read has the EDS in her family genetics – http://hedra.typepad.com/hands_full_of_rocks/2008/11/off-to-the-spec.html
Looking at the date I think your 3 weeks are up. I’m off to read more and see if you survived.
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