Contemplating Our Raven's Reality...

....well, it isn't a nice one. Constant wind pain, bloats that rival most pregnancy bellies (relatively speaking), and now he's started pooing his pants again. At this stage, Andrew and I decided we are totally unhappy with the medication he's been given (parafin wax) from our paeditrician, and stop it and decided to research it.

This is what we find. From the Royal Children's Hospital (Melbourne) Only give such medications as a final resort. To begin with ensure they have plenty to drink, and give prune juice (mixed with other juice to make it taste better), eat at least two pieces of fruit (he's offered but we don't push it) and add into it good breakfast cereals with lots of fibre. We do have these on offer to him everyday, unfortunately, he just refuses most meals and drinks. So we are going to attempt to try and get him to eat these things every day somehow and have lots more to drink. If this does not work we are going to take him off dairy and gluten. Waiting for this deadline in September is ridiculous, he's in pain and he needs something real now.

Dante already drinks loads of water and eats OK. He is suffering too, though, so he obviously needs to address what's happening in his body. He's mostly lethargy, pallor, dark circles, bouts of the big D, occasional constipation, bloating, wind pain, brain fogs....

Andrew was actually the one to come to the party on this one, he researched the RCH stuff. This was after he said, "let's just put him on a gluten free diet and see if he improves." We will do this if the above tactics don't bring the desired results within several weeks. We are also considering going on a fully asian diet, which will be both healthy and cheap! I will miss the variety we've come to enjoy though... and our pizza nights and our Gluten Free Goodness ... and Quinoa grains etc.... Umm mostly Asian? We'll we will look into the results over the next few weeks with great interest. Q.

So not a "morning person"...

Woke up between 5:30/6 am this morning to a sure knowledge I am so dairy intolerant I won't be touching it again unti maybe next time I've forgotten all this... Hell, I like the subs I use now, but a good hard cheese is something I miss. Even found a nice choc sub.. Sweet Williams, both gluten/dairy free.
Worried about the boys, they have been on this treatment for constipation and still in pain. Raven was not good yesterday, he had a huge swollen belly even though he refused nearly all food yesteray (and the night before). You might think malnurishment, but it isn't that apparently according to all those tests... just bloating and wind pain/digestional issues. You know, you don't really want to put a child on a strict diet, but honestly, isn't it better not to have a childhood of pain? Dante tells me he still has the Big D, which says to me he might not even have constipation at all (the doctor never even examined him at all).

As for Labyrinth's issues: the psychiatrist is very helpful, NOT. He has come to the conclusion we are doing the best for her at the moment by homeschooling her (umm... of course), and he doesn't need to do anything for her right now but will keep an eye on her (and agrees with a IQ test taken a few years ago and considered redoing it this time)... It doesn't explain her bad moments... self harm, problems with eating (to the extreme - we have considered locking kitchen cupboards/the kitchen itself as she can't seem to control her urges), her lethargy, depression, anger, violence, extreme mood swings, agitation, screaming and yelling that goes on for sometimes half an hour. Problem is she only exhibits such behaviour at home or with people who know her well, she is on a mission to impress her psych. Sometimes she acts like a teenager, other times a toddler, mainly dependant on if things are going her way. She's also mostly OK at the moment, but things could change again and probably will down the track. It isn't enough to keep us here though...

So unresolved at this stage. Raven self treats in a way (he refuses to eat most of the time), Dante complains and has pallor that rivals most, gives him an angelic hue (actually both have it), however the tests for Raven suggests in borderline normal and not necessary to do anything about. Raven is most likely botching his results. Basically, the paed will reassess in early September to see if his 'constipation' issues are resolved and no more pain. ARGH!

In the mean time he remains in pain and nothing really changed for him. Q.

Some Yummy Gluten Free Goodness!

Above and Below: Whole Roasted Ocean Trout with Lemongrass/mushroom/bacon/scallop stuffing, and below served with avacado, scalloped potatoes with a rice milk bechamel sauce with goats fetta and steamed vegetables. While it could have looked prettier I doubt it could have tasted finer, it was a knife edge perfect cooked fish. And of course, GF goodness. The roasted trout is obvious, cooked in foil with buttery dill for around half an hour per kilo. The Bechamel Sauce, a staple in our household is now prepared just like a normal bechamel sauce ensuring the corn flour is in fact 100% maize, with Nuttlex (totally dairy free), and the milk is rice (as I can't tolerate cow's milk at all anymore. (I miss cream/ice cream/yogurt... will eventually find good subs I hope... any suggestions?) All prepared, cooked and served by my wonderful man, Andrew. Many moons ago he had a small repotoire of cooking abilities and recipes. I taught him to make a bechamel sauce and since then he's taught himself everything else and now outdoes me in the kitchen.

Below we have the lovely Gluten Free Patties that I put together for lasts nights tea. This was enough to feed 7....

Take 3 kilos premium mince, add in 1/4 cup rice bread crumbs, tomato paste, roughly chopped spanish onion, fresh neatly chopped basil, can of diced tomatoes, 1/4 cup all purpose Gluten Free flour, lemon zest, arabian spice mix, dried thyme and 2 tablespoons of tahini and good olive oil, mix very well. Set in fridge 24 hours and roll into balls dip in whisked egg, dip into rice breadcrumbs and serve. Not a single piece was left, even my normally fussy children woofed it down and they all ate seconds.

Could pull my hair all out...

It's terribly true. Life is frustrating and challenging but doctors make life so so much worse, superior and often wrong... and loathe to admit that it ISNT an exact science...

This flares up in days, we have to be constantly vigilant about his eczema or this happens... and it is a constant war.

We went to see the ped at the hospital on Friday. He simply wants to treat his "constipation", and apparently it is so common that "we have a clinic just for it... and guess what its always overbooked." So we have to treat the symptoms first and if they clear up and don't come back, great, and if they clear up and they've still got something then they might look into it further. ARGH..!!!

As for results... He got a score of 40 for his auto-immune test, which means he tested positive but apparently not positive enough unless he gets a high enough score on his IgA (which the ped said he didn't which means he doesn't have coeliacs disease.)... I've been to enough Coeliac sites to be aware enough to question this... I asked him several direct questions after he exclaimed "Congratulations! Your son is NOT coeliac!" I asked him did he do the DNA test, he told me he doesn't need to now (what? This one test can determine whether or not he has the potential to develop CD or not.). I also pointed out that if he hadn't consumed enough gluten that can botch the results, he conceeded. I then said why don't you run the same bloods/stool tests on Dante since he is suffering the exact same intestinal symptoms... he said we'll stick with the plan and just treat the diahrrea URGH! This could be helpful I pointed out, and he told me that constipation is so common that he's certain that is all it is.

Raven unfortately eats very little, he is underweight and his height is erratic, but he is damned short. He has bad skin problems as seen above. Hello! There is the possibility that he didn't have enough gluten at the time of the test, hell I can't force him to consume anything! On the other hand, Dante eats lots of everything, yet he is so thin its crazy, he can't put weight on and you can definately determine his bone structure under his skin (wirey as Andrew puts in), he's constantly in pain and constantly got bowel issues, he's got pallor and dark circles, little energy - yet he won't do the blood test until a month (or more) of laxatives. Does this seem normal? By the way posting on my other blog will show his pallor/dark circles.

Andrew would like to accept that its all over and no CD, just constipation. I certainly don't want them to be waiting 28-30 years for a diagnosis if that is their problem, I just want the doctors to do their jobs and find out! But what do I know, right? Andrew just thinks that I am never going to be happy to have a diagnosis of CD. Maybe he's right but I'd like it done thourougly with all avenues taken.

Looks like I'll be going back to Dr Hughes and saying "put me on the list I'll do the gluten challenge and get a biopsy." Because the doctor refuses to accept that I have it and so doesn't take that into account. 10 years of diahrrea gone in 3 days is not a significant result!

Oh, and I nearly forgot to mention when I asked the doctor does constipation explain their acid reflux he was actually stumped, asked how we knew they were having it, I told him Dante complains of a hot, burning chest and Raven has an overactive sensitive gag reflex. It made him sit back and think a bit then said, "we'll still do the constipation treatment first and see if it fixes it, OK?"

Well, we will be awaiting the results of the laxative keenly. Q.

The Quest for Dante's Diagnosis....

Is an ongoing saga, as is Ravens.

Our GP hadn't rang about the results of his latest stool sample (if he still carried the intestinal parasites) even today, even though its nearly been 10 days. We even got the pathology bill on Tuesday, but still didn't know. Now my memory is still shocking and I'm coming off anti-depressants cold turkey (headache and nausea city), so these things didn't help. I remembered on the way home today after searching after the question of what to buy Kai for his birthday next week (which still remains a mystery.)

So I rang but of course he couldn't take my call and the admin staff said he'd call when he got a moment. He called back around 7:30 this evening. So the verdict after 10 days? A broken promise. The stool sample came back negative to infestations of aliens in his intestines. The promise was he'd was simply going to refer him directly to the hospital. Now he says to wait and see what happens with Raven on the 16th. Maybe, as Andrew pointed out, there may be some reason for this, if in fact the results on Thursday for Raven say X then it can fast-track a diagnosis for Dante. Where is House when you need him? Either way, we still don't know what's going on and to date its been over 18 months of this pussy footing around. What a hassle if it were life threatening conditions.

As for personally, I haven't gotten any better since going GF. Yes, it was a rather dramatic life changing couple of months, then its no changes. I don't think it is the whole story, I need to be off dairy, but is there more? Is it a true diagnosis since I never had that biopsy? Maybe I should have it, but I know I can't tolerate Gluten, and it does horrible things to me if I as much as smell it...

Oh, it is hopefully going to have some confirmation one way or another come Thursday - we do have the confirmation of a autoimmune disease of some variety, but have you seen how many/how very scary some are? I mean he does have eye symptoms, they are huge and heliosensitive, that might lean him towards something else, but checking over again and knowing my own positive response to a GF diet I am fairly certain it will be Coeliac's Disease.

Wish us luck, will us the best case scenario or pray for us or whatever it is you do if you feel for our cause,
Good Night, Q.

The Horrid Happenings of the 6th of July

Today we had to take Raven to the hospital first thing in the morning for more blood tests/stool samples...
Well, naturally they kept us waiting for nearly two hours while "something unexpected was happening in the treatment room." Eventurally after some pestering they agreed to take him into the quieter 'children's waiting room' to do the test. All this time he was anxious and upset because he remembered how they bled him last time (pushing the blood out his veins because "he just wasn't a good bleeder."
I asked him if he wanted mum or dad to take him in to hold his hand? He asked for me... well, long, tiring, stress filled 10 minuted was never to be had by anyone (OK but it wasn't very nice)... while I and two nurses restrained him they gave him a 'finger prick blood test' and took out about thirty drops (plus all the ones the nurses wore) as he thrashed around shouting 'stop, just stop" whilst the nurses pushed blood out of his finger over and over again. Even my diabetic mother who does the finger prick blood test 3 times a day said that was cruel, one prick hurts enough but to continue to push blood out?
Needless to say he wouldn't co-operate with other sampling and tests, and we still have to get that stool sample into them ASAP (I'm writing this on the tail end of his birthday).
I asked them why the finger prick test, they said it normally was done for tests to do with muscles mostly, then later volunteered it also is used to study certain enzymes. I am in the dark as to what they are searching for here.... I'm really concerned now.
Dante is still waiting to hear back about his stool sample, but they haven't failed to send us a bill for it.
And so the anxious wait goes on...