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Post by catherine on Dec 18, 2011 21:36:01 GMT
Hi Everyone.
When you don't know the cause of IBS symptoms eg stomach ache which occurs around 4pm and get worse until about 3 am.
What are the safe foods?
Rice
Chicken
Potatoes
Sarah has bordline Fructose Malabsorption and Lactose Intolence. Iron deficiency anemia which is not improving what iron tablets.
We are going to stop the iron tablets for a short time to see if we get any improve in symptoms.
Any advice
Catherine
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Post by Charlie Arnold on Dec 19, 2011 18:22:35 GMT
Hi Catherine
has Sarah been tested for helicobacter pylori? Its a bad bacteria infection of the small intestines and stomach and can cause painful ulceration. it may explain the high methane levels in the breath test.
Meg was diagnosed with this when she was 2 as she used to get bad stomach pain and would be screaming in pain at bed time sometimes until about 3 am then it would settle, usually at the time I got through to the doctors for advice!!! They treated it with specific antibiotics and a speciall antacid (sorry can't remember the name of them) and they did the trick to ease her pain at night. Unfortunately it meant they went off track diagnosing a fructose problem as they thought that was all that was wrong with her but at least it stopped the screamng pains.
They diagnosed it with a breath test. Not sure if this helps. I assume it isn't low blood sugar, food would ease that.
I would say all 3 things (as long as white rice and old potatoes as fructose content lower) should be good if bowel inflamed. whenever Meg is having a food reaction I put her on chicken and rice for a couple of days and that helps settle things.
gluten free pasta would be good too if hypoglcemic.
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Post by catherine on Dec 20, 2011 22:26:38 GMT
The chemist believes it maybe the iron tablets. That they have bound she all up. So for now we have removed them is they are not helping the the iron deficiency anemia anyway. eg iron stores have gone up and all other iron levels are still low after 4 months.
Stores now 80 and you should have anemia at this level.
Catherine
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Post by catherine on Jan 4, 2012 21:33:41 GMT
Hi Everyone
Sarah has not improved since being on the diet. she has lost a total of 9kg. 4kg have been between Christmas and now.
She now weighs 47 kgs (she is 5ft 8).
We are awaiting on a specialist appointment on 25 January, although we are on the cancellation list. She GP believes that she is bleeding into her bowel.
A test that she had in June 2011 which were led in believe was clear actually said that if Imflammable Bowel Disease was a clinical possibility other test should be considered.
My daughter no longer swims, and is sleeping up 16 hours per day. We had two trip to the emergency room over Christmas.
Regards
Catherine
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Post by Charlie Arnold on Jan 5, 2012 17:34:27 GMT
Oh Catherine,
I'm sorry to hear things aren't going well for you at the moment, that is certainly a worrying weight loss. It would certainly expain the anemia if she is bleeding. let's hope they get on with proper investigations. Unfortunately, certainly here in the UK they do need to end up in A & E several times before they take you seriously. That is a shame if she has had to stop swimming if it is something she really enjoys as they need that motivation and stimulation to feel good about themselves. Meg is the same with riding, she loves it and its all she talks about but half the time she just doesn't have the energy. what I do now is we just do five or ten minutes when she feels up 4 it, I guess that is harder with swimming as I just pop her on the pony while I fiddle about, but would it work just to keep her ticking over with it?
How is her diet going, it must be hard with cutting out dairy as that is such a good energy product with kids. I suppose the best thing to do is keep her diet as simple as possible and as easily digestible as possible to help her bowel heal, but then you almost need her reactive when they test her to give positive results otherwise everything may come out a false negative.
Can she tolerate bananas as they are a good energy source and easy to digest, especially if eaten on their own ie two hours after a meal or 20 minutes before a meal. That actually goes for any fruit eaten if you read the food combining diet theory.
But good luck, thinking of you, there is nothing harder than a sick child with no clear answers. Keep us posted.
All the best,
Charlie
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Post by catherine on Jan 8, 2012 0:30:36 GMT
Thanks for the concern.
At moment concerned that she eat something. Doctors are concerned that anorexia. At this point I am telling them it is not anorexia, we need them to look for the underlining cause.
She fainted again yesterday and has a lump on the back of head.
On a bright note very managed to get appointment brought forward to Wednesday.
She asked me yesterday what happens if she never gets better.
Catherine
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Post by Charlie Arnold on Jan 10, 2012 18:47:55 GMT
Hello Lucky, welcome to the site. Thats amazing to find that was what was wrong with your son as well as a great relief to you I should imagine. I think alot of these diagnoses are found by default after everything else is tried and sometimes it just takes another persons different perspective to crack the problem. It is also very dependant on the parent taking a stand and persisting that something is wrong, I know in Britain that if the basic tests are negative they just tend to shrug and say oh well, some kids are ill and we never find the cause. Oh well, poor kid then just has to put up and shut up, that has to be wrong.
Do you have to monitor his fluid levels now or have they balanced out.
Catherine, good luck today (for you) tomorrow (for the rest of us). Lets hope you get some decent answers and poor Sarah can get on with her life.
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Post by Charlie Arnold on Jan 11, 2012 12:47:48 GMT
Hi Lucky,
your sons history sounds very similar to Megs with regards the is it or isn't it with fructose. Sadly because so little is really known about it then the answer tends to be medically - we don't know.
They discounted Megs as HFI because her liver readings were ok and when they did hypoglycemic tests ie 12 hour fast then bloods every hour to see what happened, everything that should have happened did happen even though her blood sugar went very low. So on that basis they say it is FM, however all the tests they did were a year after stopping fructose so is that a false negative. In britain they don't seem to gene test for it.
On the HFI diet she was generally alot better but still had low energy, went down with every bug going, blanked out alot, night pains, poor sleep etc, but is that fructose or something else?? When do you stop looking. they decided to try the fodmap diet and I do think she is better off wheat but not convinced still on the fruit and veg and sugar added in as responses are up and down. It is so tricky to know whats what.
I do wonder if these kids that get symptoms from birth have a different type to those that develop it later in life and theirs is not HFI but more akin to it and they just havent' researched enough yet what is going on so we all get bunched together. My feeling though at the end of the day is if the kid can cope with the limited diet stick to it for a happier, healthier life!!!
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Post by catherine on Jan 11, 2012 22:16:47 GMT
Hi Everyone
The first comments to Sarah was that she was not a very well girl just by looking at her.
She is sitting on 48kg (if she losing anymore weight will be hospitalised)
She believes there are no iron stores. The iron marker that was going up is also a marker of inflammation. She has inflammation for least 6 months.
Her colon is not working. She has constipation but her bowels are still working.
She will have a urgent colonscopy and the test via other end at the same time in early February. Hate to know when the test would have been if not urgent. The prep for test will sort out constipation issue but this is not the cause of anemia or pain.
On doctors advice have order supplement from the Chemist with no lactose. Need not to worry but the fructose in the supplement at this stage.
Now giving prune juice morning and night.
Catherine
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Post by Charlie Arnold on Jan 20, 2012 17:52:25 GMT
Hi Catherine,
how is Sarah going. Any news
Hoping all is ok with you, thinking of you.
Charlie
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Post by catherine on Jan 21, 2012 5:27:45 GMT
Testing has been moved forward to Wednesday.
She is now 45kg.
Hopefully testing will show something otherwise she will then have MRi.
We have moved to the private health system
Catherine
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Post by catherine on Jan 25, 2012 12:54:16 GMT
Sarah has Crohns, awaiting more results.
Catherine
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Post by Charlie Arnold on Jan 25, 2012 18:35:25 GMT
Oh Catherine, at least you finally have some answers so hopefully now you can help her symptoms properly. I have a friend with Crohns and although she has some tough times she does lead a very active life. At least it has been picked up relatively early so the bowel should heal with the right help but it certainly explains alot of her symptoms.
If you need any advice on Crohns I could ask my friend if she can get in contact with you. Let me know.
Thinking of you both
All the best
Charlie
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