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Post by catherine on Nov 14, 2011 10:20:42 GMT
Hi Everyone
We are still trying to get a DS. Sarah aged 16 has had problems with borderline iron levels and amenia for the last 4 years. The ibs has developed in the last 12 months. She has a couple of faints while exercising which results in heart tests (all clear).
She has had breath tests for frustose and lactose this week. Now the wait for result. Interestly her stomach ache occurs about 8 hours are the test.
Catherine
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Post by Charlie Arnold on Nov 14, 2011 18:37:11 GMT
Hi Catherine,
Megans stomach aches started the day after the tolerance tests and carried on for several weeks. Good luck with the test results, keep us posted.
Anemia is quite a common problem with celiac, maybe it is also likely with FM if the bowels are not absorbing properly as they are awash with water.
Megs also tends to faint if she overdoes running about, or has a hot bath or hurts herself, I think with her she gets hypoglycemia.
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Post by catherine on Nov 15, 2011 22:08:55 GMT
Charlie
Another 8 days to results. Now having trouble keeping up with everyday activities. Sarah was swimming 8 times a week. She has only made two training sessions in the last 10 days. She 10 year exams start on Thursday.
Any suggests on food?
Regards
Catherine
PS Looks like I should have awaiting to after exams for testing. At the moment I feel like I have made my daughter ill.
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Post by catherine on Nov 16, 2011 11:57:22 GMT
Results are back.
Lactose results were higher than baseline Lactulose
Fructose has come back as boardline.
Planning to start the Low-FODMAP Diet.
I have purchase a book called Food Intolerance Management Plan by Sue Shepherd and Dr Peter Gibson.
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Post by Charlie Arnold on Nov 21, 2011 18:31:52 GMT
Hi Catherine, well good to get some results. Did they do both tests on the same day or close together, if so which order, I'm wondering if the fructose came out lower as it was close to the other one, therefore is borderline accurate. It'll be interesting to see how she gets on with the diet changes.
If lactose is high then thats hard, I was going to suggest milk to boost energy but that is no good.
Thats a tough training schedule for swimming on a non-food sensative kid never mind an FM one. she may suffer more hypogylemia than normal kids as all spare glucose is being used to clear the intestines of stray fructose. Lots of small protein snack are her best bet and gluten free pasta dishes for carbs.
Keep us posted.
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Post by catherine on Nov 22, 2011 2:51:01 GMT
Lactulose on 7/11/2011 - 84 ppm after two hours
Fructose on 9/11/2011 - 10 ppm after two hours,
Lactose on 14/11/2011 - 92 ppm after two hours
There were also rises in the Methane levels.
Catherine
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Post by Charlie Arnold on Nov 22, 2011 17:24:48 GMT
Does that mean she has a bacterial infection, I think methane and the lactulose are positive for SIBO. That fructose reading is ok but I wonder if doing them so close together gives a negative reading for fructose.
I suppose the other way is to do elimination diet for a while, then try fructose again and see how she goes.
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Post by Charlie Arnold on Feb 17, 2012 18:34:52 GMT
Hi Catherine,
How are things going with Sarah, I hope you are getting some answers and help. I posted this on Fmmom page too as it seems relevant to a few of us but maybe the carbohydrate metabolism problems are causing metabolic acidosis. symptoms of which are:
Symptoms are aspecific, and diagnosis can be difficult unless the patient presents with clear indications for arterial blood gas sampling. Symptoms may include chest pain, palpitations, headache, altered mental status such as severe anxiety due to hypoxia, decreased visual acuity, nausea, vomiting, abdominal pain, altered appetite (either loss of or increased) and weight loss (longer term), muscle weakness and bone pains. Those in metabolic acidosis may exhibit deep, rapid breathing called Kussmaul respirations which is classically associated with diabetic ketoacidosis. Rapid deep breaths increase the amount of carbon dioxide exhaled, thus lowering the serum carbon dioxide levels, resulting in some degree of compensation. Over compensation via respiratory alkalosis to form an alkalemia does not occur.
The whole acticle is on wikipedia and maybe worth considering, I suppose the only solution is removing it from the diet but may explain a few things.
Anyway do keep us posted on Sarah, we are all thinking of you.
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Post by catherine on Feb 23, 2012 23:30:39 GMT
Haven been here for while.
My daughter Sarah has dx of Crohn's disease.
Has began taking medication. Is back at school gain 4kg in the two and half week since treatment again, she is now 48.6 kg.
She had her first session back at swimming today.
Begin hunging out at the Crohn's forum.
Catherine.
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Post by Charlie Arnold on Feb 24, 2012 17:42:22 GMT
Hi Catherine,
great to hear from you, have been wondering how things are going. I'm so glad you have an answer and that things are picking up, that must be a huge relief to you and Sarah. And great that she has been able to go back to swimming, that must be a big positive step for her.
All the best. good luck with the other forum. Keep us posted when you have time.
Charlie
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Post by catherine on Mar 25, 2012 22:04:39 GMT
Hi Charlie
Sarah is no longer anemia. Her hemoglobin levels is 115, this is the highest it has been in at least 2 years and 9 months. (This was she first ever blood test). Amazing how quickly it improved.
Iron level have gone down (slight concern). But maybe she body can't store iron when making so much hemoglobin.
Now thinking Sarah has had crohn's for least 3 years prior to dx.
Catherine
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Post by catherine on May 15, 2012 23:03:56 GMT
Hi Everyone
Sarah is doing well back to swimming 4 times a week. She is steadly improving. I visit to the GI are now out of two months.
She is 54kg, this is a gain to 10 kg in three months.
She is currently in a taper of prednisolone now down to 5mg per day from 30mg. She also taking a nasty drug called azathioprine 75mg (we try not too look up the side effects). All prednisolone had improve her lungs, so her asthma medication has been reduced.
Catherine
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Post by Charlie Arnold on May 16, 2012 11:27:10 GMT
Catherine, that is fantastic news, I am so pleased for you both, it just goes to show how perseverence with a diagnosis pays off.
Yes, I agree, don't look up side effects too much if they are doing the job........
All the best, keep us posted.
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Post by catherine on Jul 3, 2013 13:46:53 GMT
Sarah now also almost 18 year old. She is symptom free and studying hard in her last year of high school.
I wish you all the best with your children.
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Post by Charlie Arnold on Jul 7, 2013 11:25:46 GMT
Oh Catherine, I am so pleased for you, Sarah and the rest of the family. It just goes to show it is worth that search to find the correct diagnosis and treatment for each individual child. Well done, you can now sit back and enjoy watching your young lady flourish.
All the best for the future Sarah.
Thanks for updating us. See folks, there can be an answer at the end of the long road. Not always the one you expect.
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