Best typing error ever.........

[charlie]

Meg had her sucrose challenge test on Tues and wow, got a report through today from hospital...................... after only 3 days....................... normally takes months.................

But got the best typing error ever, gave me a good laugh anyway.......................

In the results of the test it says highest reading 2ppm H2 (normal range 0 - 20 ppmH2) but one hour into test patient's behaviour started to change and she became more active - hyperactive and ERROTIC more than usual...............................

I burst out laughing and had to think quickly on my feet to explain what I was finding funny to meg and her school friend..........

Now as to diagnosis: they were testing for CSID but have they diagnosed it, I wonder if they might as it says
Primary diagnosis: Admission for procedure
Secondary diagnosis: congenital sucrase-isomaltase deficiency

Then further down after the typing error and Investigation results it says
Co-morbidities and complications:
Congenital Sucrose - Isomaltase Deficiency

The form is very confusing and lots of bits typed in wrong section so will wait for this delayed appointment with baited breath but does this mean we are finally at an answer???

[charlie]

AAAAAAAAARRRRRRRRGGGGGGGGHHHHHHHHHHH

Incase you haven't twigged, I am not happy.

We went for our appointment today. Maybe I had too many high hopes. As I have already said this was changed from last week. They were running late for starters, never good when you have a child that doesn't like hospitals and strangers.

Eventually got into room.Instead of the senior male consultant sitting there that we usually see there is a younger female............ sorry she says I am covering for Dr ............ so let me just read back on her history................ So we go back over everything, and stress that she was not good on the low fodmap diet as it records she was better on it...................... but she was better on less wheat...................... Then i said about her being better on lactofree milk....................... so has she had a lactose challenge test. Yes, says I, but she insisted they hadn't done one as there was no record of it........................ But they did one just after the first fructose test........................... Maybe we need to do one of those.........................NO you've done one. What about the sucrase isomaltase test I ask............. she had one done 2 weeks ago. Oh, what an enzyme test, no a sucrose challenge, so not an enzyme test. No............................ well thats not for sucrase isomaltase then........................

I took a deep breath, she eventually found the sheet.............. Lucky I mentioned it then ............................. Oh that was negative................................ Count slowly to 10. But what about the behaviour changes................................. Hmmm, well they suggest a metabolic problem............................. so could it be CSID? Oh I don't think so says she, they usually get really bad diarhea literally running through them, well the 2 cases I have seen have.....................................

But she used to when she was younger, till we stopped fructose and sugars therefore decreasing the sucrose................... I had to repeat this several times.

So we went through the changes when she has something, the behaviour changes especially. Yes that sounds metabolic.............. so we are getting somewhere then................ So she suggests we do a lactose challenge but do bloods and urine test if she shows changes, but last lactose challenge she didn't change.................. but of course they have no record of that................. I asked why not do it with sucrose................ but that was negative she says..................... but it was the most dramatic on the behaviour changes so surely that is a better starting point for metabolic problems. She'll have a think and chat with the specialist and we will wait to hear............................. Meanwhile make an appointment for 6 months...................

Now I apologise to any guests that are medical but ***** ******* *************** ********* ********* *******..........

As a parent this is not good enough. I am an intelligent human being, obviously very rational..... well I like to think so but this is not a good way to carry on. This has been going on for 5 years now with them but 9 years for her. This has a huge effect on her life, her schooling, her sleeping, her well-being. So lets get serious. Why does it take so long to get any sense and why do they not read over the notes properly before seeing the child. I took a day off work again, she missed a day of school, we drive for over an hour to get there, then have an hours drive back, for what, to sit there and go over old ground without going any further forward. Well I suppose it is starting to make sense slowly but why oh why so slowly.............

I understand this is an unusual condition, I understand there are kids much sicker............ but this is still a child with a problem. I feel like putting her back on a normal diet that any kid would have and start all over again when she is sick. But could I do that to her, or even myself.

On a positive I suppose at least we are narrowing it down to a metabolic condition that is having a direct effect on her behaviour, therefore probably her brain function to, which explains everything else. But what do we do about it to improve things..........................

Watch this space.................. slowly........................ but don't hold your breath........................

Read more: fructosemalabsorb.proboards.com/index.cgi?action=display&board=general&thread=148&page=1#ixzz2A8djw2jw

[colormist]

This is one of the things about the medical profession that makes my blood boil. "Oh, well, they're not showing symptoms of having this condition so clearly they don't have it." They're not showing symptoms because they have the condition MANAGED. What they should truly be saying to the patient is that "They're not showing symptoms of a person who is poorly-functioning with this condition."

This is why doctors think adults with HFI do not have HFI. With their logic, children with this condition would clearly die because nobody in their right mind would ever think to omit things from their diet that make them feel like nuts. I mean, clearly everyone follows the general medical rules about diet and exercise to a "T" and nobody would ever, ever, ever go a day without eating lots and lots of fruits a vegetables. And because people would follow these rules so very blindly as the doctors demand patients should, then all children would die from following a doctor's advice.

AUGHHH. Charlie. I feel your pain. *sigh*

This reminds me a lot of the test for Celiac's Disease. In order to confirm you have Celiac's, you have to eat gluten for several weeks straight (to the point where you've damaged your digestive system and are feeling quite awful). Then they go in, take a biopsy of the system, and go "yep! It's damaged! Don't eat gluten." Of course, you could always omit gluten from your diet for a few weeks and see if that makes you feel better. If you do feel better, then you could safely presume that perhaps you shouldn't be eating gluten. But then you wouldn't have medical proof that you have Celiac's... Catch-22, I guess.

[ukbill]

Charlie I think under the freedom of information act you have the right to have a COMPLETE copy of Megan's medical records.

Might be a good idea to have a copy of everything before they loose some, and do a conclusions report I don't mean that but I cannot spell the right word tonight.

You know what I mean a brief note as to why each test was done and the circumstances (I.E. controlled diet for months before the test) followed by the test results do it all up in a folder and take a copy with you to the next meeting.. beat them at their own game.

Do what they should be doing looking at all the test results in a global fashion not finding results one at a time and not having time to understand the conditions of the test etc..

I would further suggest sending the copy of the compiled test results and covering letter to the specialist about 3 weeks before the next appointment and have it marked URGENT PLEASE READ!

That might get you a better response!

I know you should not have to do this but this is the modern NHS we are dealing with where patent care comes a long way behind boxes ticked and reports filed these days.

Alternatively somehow get private funding for a consultation with a metabolic consultant.

We had to do this for my mother because she was getting the run around all the time.

She had been treated for Gout for 5 years when she did not have it! and the tablets for gout were interfering with the other tablets she needed to control her blood pressure.

The Consultant kicked everything into line and started my mother on new line of treatment for arthritis not Gout (on the NHS) and she has been 100% better since!

£150 Well spent!

[charlie]

Oh, believe you me, I now have a file with 9 sections to it, ranging from school to general info at the back and each separate specialist. I did it in the spring as I realised her notes were getting into chaos. Unfortunately I cannot locate the old file at the moment with her test results from 2008 when I am sure they did the lactose test. That way, every time I see someone or we have a TAC meeting I can quickly locate anything as soon as the question is asked.

I thoroughly recommend it to any parent going through the grey area club with their children. Slowly, and I do mean slowly, it starts to make sense. but make sure you store everything from birth.

[carolyn]

Charlie, I feel for you. That was appalling treatment. I have had to deal with incredible arrogance & patronising attitudes from some medical staff in the past regardin my HFI. Keep strong! You're a great advocate for Megan. Our youngest son (now 21!) has had ME since he was 13. I've had to fight like mad for him over the last few years. (Think at long last he's slowly on the mend). I too have kept copies of everything to do with the illness. Good luck.