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My daughter had an emergency laproscopic appendectomy at 9 years old on March 2015 after her pediatrician let her walk around with a busted appendix for 2 weeks.
She was in the hospital for ten days due to the infection and even had to be repunctured to drain the cyst the infection had created.
She has been in the er several times due to throwing up daily multiple times at school and having to come home. She has had two ct scans, several blood tests and an x-ray with only constipation showing. Her pediatric-gi specialist told her to take two cap fulls of Miralax every night.
Her throbbing pain still comes and goes every couple of months. She has gained a lot of weight and both her face and stomach are swollen.
Any ideas to help her would be great as she has now seen 6 doctors with no resolution.
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Oh my goodness.
Your poor girl! Through so much. Can really empathize due to similar experience, strangly in same spot, but her appendix was normal upon removal.....pain going on.
Don't give up, hang in there, have stamina.
On the one hand we dear parents are asked to not drag a child to too many doctors and are excused of confirming the pain in child's brain by showing our concerns and trips to docs and invasive tests, on the other hand we dear parents know, what is 'normal' and what is not in our child, if it was 'just school avoidance' (oh yes, we were accused of that!) induced real pain or something out of the blue simply wrong and happening.
So if you feel, there is something different after 2 years, by all means go on looking. Your girl is near 11 years, isn't she, the ovaries set on doing their job.
- Has the CT revealed anything about the ovaries? Can you ask? Could there be adhesions from her inflammation, surgery, that now play havoc with ovaries, that start to get bigger or simply by growing anyway?
- Has her cortison level (can be done in urine) ever been checked?
- Is HAE (hereditary angiodemea) excluded (C1Esterase Inhibitor tested during a pain episode)
- Is Porphyria excluded, would it fit in with symptoms (the not skin showing forms)?
- Is fever involved? If yes, could there be a slight chance of familar mediterranean fever?
- We also thought in my daughter to be abdominal migraine (low right side cramping pain like appendicitis, appendix gone, pain staying) and got 3 lots of different medication to try, which did not work, hence was not the cause. Sometimes a trial of medication is also producing a result, by simply showing if it worked or not.
- We also had to try neuropathic pain treatment, and it did not help (Gabapentin, Pregabalin)
- Have you had CALPROTECTIN in STOOL tested? Pretty good marker if something inflammatory in guts was going on. (gut inflammation does not neccessarily show up as elevated CRP or white blood cells in blood)
Yes, ask all these possibilities if they fitted in or not, if worth exploring or not.
If again one of those beautiful imaging, could you ask for an MRI? CT have pretty high radiation in the abdomen area. Girls should not have more than two per year. MRIs are wonderful. I am trying to get one for angiogram and venogram assessment of the area of pain, MRA, MRV. There might be contrast agent gadolinium given, but that's it, and no radiation and no, it is not an angiogram (going through vein with catheter)
We also had ascending colon constipation and better results with a level teaspoon of 'Calm' magnesium citrate per day than with Movicol.
But also when colon was squeaky clean (for colonoscopy), the pain continued.
First we were told, the stretching of colon walls was more painful sensation than cutting it and needed days to settle once stretched by constipation, but even when constipation was long gone, the pain continued.....
We got then told, that sometimes the brain still interpreted normal movement, peristalsis as pain and we 'should just get on with life and enjoy', hello? With pain, vomiting?
You have to be strong and persistant. And lots of cuddles for your girl.
One pain specialist dared to say to give no special attention since it would 'reinforce' the pain pattern, in our case a load of rubbish. Again here you as a parent know your child better than anyone. Actually only being more understanding and the school assisting us much, actually helped, not by being firm and 'die'....
Many docs make very general assumptions as if every case was the same and I am pretty sick of that approach.
Getting rid of constipation is sure no mistake.
We tried also probiotics and so on with no success. We tried so many diets, exclusions, for nothing, only meat and nuts are really making more pain it seems, but keeping them off does not ease the pain away. (kept food diary, exhausting)
Amitriptyline, palmitoylethanolamid and low dose naproxen seem to do a bit of pain tackling for us to get finally some sleep. Have a look into low dose Amitriptyline, it is not given for antidepressant (as it was originally designed), but for abdo pain.
You might want to enquire about a gastric emptying study, if a delayed emptying could be reason for vomiting, yet again, it does not explain the pain down there in guts and does not explain as to why it is delayed.
Also you might want to ask, if there was any stump of appendix left as this can get re-inflammed. ?!!
If you have her blood tests, have a look at 'urea', if it was low, she can't digest proteins and you need to provide amino acid drinks. (some are yuck, invest in a few brands, tasts and lot of ice cubes crushed)
all all all the best!!!
We also do Epsom salt baths, warm water bottles, oil wraps, but it's all just not cutting it and no painkiller killing the pain, except for narcotics/opoids, which are not given...due to slowing guts down again unless one shows up in ER, your child gets pumpt full with them....????....hello, that's not the answer. At home my girl gets them on special occasion like birthday to have 3 hours of simply: no pain.
We have been through 9 docs so far and counting, finally after 15 months of waiting time seeing the 3rd ped gastroenterologist who might have a fresh approach. We never got even a barium meal follow through study for small intestine assessment, did you?
Most 'risk' = celiac predispositioned patients are HLA DQ2 positive,
but only some are only HLA DQ8 positive. You don't need both to be predispositioned, have a 'risk' of maybe developing it. Most common: HLA DQ2 (95%).
Important would also be HLA DQA1*05 and DQB1*02 alleles.
There are about 40 genes by now known for the celiac predisposition puzzle and growing....
BUT having a mutation in one of those genes
does NOT mean one has celiac disease,
doc very correct
(only 1 in 10, or 1 in 30, depends on study, on ethnic),
you have some risk of maybe developing it, shown via:
Blood antibodies (Anti-transglutaminase type 2 antibody (anti-TG2) levels and anti-endomysium-IgA antibodies (EMA) are relevant for active disease during gluten diet
and of course: the biopsy confirmation of duodenum mucosa reaction.
These two tests will tell, how relevant a celiac disease diagnosis is, if it was celiac or not, not a gene test. Correct.
Basing a diet change on genes, that predisposition on risk only without having a positive biopsy or antibodies in blood, will maybe not cut it,
but maybe does
as many respond positively on a well monitored gluten free diet since whole diet tends to be better monitored and healthier,
(less prepared food as content is a huge mix, impractical in order to avoid gluten, hence avoided for example).
A true reacting celiac patient (not gene carrier only) has another risk and has to stick to gluten free diet, not because of feeling unwell/bloated/pain/malabsorptions, but higher risk for gut cancer/lymphoma. THAT is the real danger of undiagnosed but existent gut mucosa reacting celiac disease. I have it running in my family, loads of celiac experience, including deaths from lymphomas due to going undiagnosed for decades or not sticking to stricked diet as the smallest amount of gluten can throw 3 months of stricked diet away. A gene alone does not worry me, but a celiac positive duodenum biopsy, blood antibodies, yes, does worry me heaps.)
Also if your daughter is HLADQ2 positive, it is a good idea to get immediate family members screened (including yourself), if someone has the blood antibodies floating as a screening test and go from there (to biopsy in case blood antibodies positive since they are often false positive, as screening tests should be more sensitive than specific to rather pick up one to many than having one go undiagnosed slipping through)
since many celiac patients do not have physical symptoms
(only the tip of the iceberg shows symptoms),
but are exposed to the high risk that gluten diet brings to true celiac patients as mentioned sadly above.
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