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Nightcat - are you around? I need help with some of ds1's test results.

(7 Posts)
moosemama Tue 04-Oct-11 18:39:57

Hi Nightcat - or anyone else who might be able to help.

Been to see the paediatrician today for the results of ds1's stool samples - take a fortnight ago.

Apparently the enzyme results had to be sent of to a lab the other end of the country and aren't back yet and the pathogen test didn't turn up any nasty organisms, but while we were there the paediatrician said he'd look over the bloods taken by the GP back in late June, when we discovered ds's weightloss.

At the time we were told his bloods were all fine - but I know from past conversations with several GPs at the surgery that the results for children always come through as adult results and there is only one GP that's any good at interpreting them. hmm

So, today we found out that ds1 (who is a vegetarian, btw) has raised protein, esinophils and B12.

The paed did say that the esonophils could have been related to ds's very mild hay-fever - but iirc ds wasn't actually suffering when the bloods were taken.

He didn't seem to think the raised protein or B12 were likely to be a big problem, despite admitting that they are anomalous for vegetarian results, but wants to see what the enzyme results turn up.

I have googled a little (I know, I know) but have stopped because I don't want to scare myself and - as is the way - the first couple of links looked pretty scary.

The paed is going to call me with the enzyme results and send out a follow up appointment to review him in a couple of months.

From what I can make out, it could, possibly, be related to a liver problem - which, if it is the case, I suppose would be confirmed by the stool/enzyme results when they come in.

In the meantime, any thoughts on what we have so far? Ds's weight has dropped a pound and a half in the two weeks since he was last seen at the hospital - although he has had a fluey bug in the meantime - and he still has a painful abdomen, intermittent diarrhoea and regular-ish episodes which he describes as 'raging pain'. sad

ImperialBlether Tue 04-Oct-11 18:47:16

So sorry for you and your son - there's nothing worse than a sick child.

I hope everything's better soon.

Northernlurker Tue 04-Oct-11 18:49:20

How old is he?

moosemama Tue 04-Oct-11 19:32:14

Thanks Imperial.

He's 9 Northernlurker.

This has been ongoing for a couple of years now. He tested negative for coeliacs, but continued to have symptoms until we removed gluten from his diet under the direction of his paediatrician and dietician (they agreed there was a correlation between his symptoms and diet based on his food and digestion diary).

He drastically improved and gained weight and height properly for the first time - well ever really, after we removed the gluten, but the symptoms came back earlier this year and were particularly bad over the summer.

We also found he had lost over half a stone in the first half of this year. He's gained most of this back now, but is still tiny and hovering between the 2nd and 9th centiles for weight, when as a baby and toddler he was always hugging just under the 25th. He first fell to the 2nd centile when he was 4 and had repeated strep infections, including two episodes of scarlett fever during which he was really ill. He also had raised lymph nodes for over a year, but by the time we saw the paediatricians for the first time they'd gone down. After that he gradually crept back up to the 25th centile and stayed there from around 5 1/2 years old until he was 7 1/2 ish.

He was back down to the 2nd centile in June this year, but is now closer to the 9th again.

To be honest, I thought the paediatrican might say he wasn't concerned as nothing seemed drastic or terrible and if the enzymes came back ok he would discharge, but he wants to see him back for another review and for us to monitor him in the meantime, so at least he's not writing him off.

Northernlurker Tue 04-Oct-11 19:46:23

Ok well I can guess what you're frightened of but his bloods would show the real scary stuff so put that out of your mind. It is good that he has gained some weight as well as losing it. With the diarrhoea going on and abdominal pain I would think it's something digestive that's the major issue. I am not medical btw but I do work in the NHS. Doctors like to keep an eye on patients till things settle. Booking a review doesn't mean something's wrong, just that something obviously isn't right iyswim. When anything really horrid happens they don't leave you hanging for a month or two - your feet don't touch the ground - so try not to fret too much.

moosemama Tue 04-Oct-11 20:10:08

Thanks Northernlurker.

That's why I didn't read the top links in Google. I know if I started matching symptoms to results on one of those links it would be far too easy to talk myself into something that's the least likely option.

I think the most likely explanation is something digestive related as well, its just so frustrating when its been going on for this long and we still have no answers, while he is still suffering. (I know its not their fault by the way, they are working their way through various tests and investigations and its not their fault that the results aren't coming up with the answers we need.)

Every time we go, we get called back for another review in a few months and then at that appointment, we are no closer to finding the answer and ds is still not right.

Half of me is thinking they will just end up putting it down to ASD related 'gut issues'. Once they've ruled out all the nasties (which can only be a good thing) they will end up with no choice and that may just have to do as a dx - which would be fine, if I knew how to help him.

I guess sometimes we just have to accept that they don't have all the answers and hope that some research turns something up in the future.

We are one of those annoying auto-immune type families I'm afraid (rhuematics and arthritis, fibromyalgia, ME/CFS, IBS, asthma, lupus - blimey it sounds like we should never have carried on breeding doesn't it! blush) and I think medical science still has a long way to go with sorting out the tangled connections between a lot of those types of illnesses/disorders.

moosemama Tue 04-Oct-11 20:36:34

Just realised there was a typo in my first post eosinophils not esinophils. Sorry.

There are probably more typos, but that one just jumped off the page at me.

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