My daughter.

[tireesix]

This should really be in health and healing maybe but I think it is more about parenting and I am kinda scared about it all. She is 5 by the way.

First blood test she had a couple of years ago showed she is IgA deficient, the docs say there isn't an issue with this, even though she suffers constant tummy problems, takes forever to feal with any infection she gets etc.

She was sick last week with the flu and woke up Friday with a mouthful of blood, I freaked, took her to the GP who did a blood test and it shows clotting factors are borderline, she has to have repeat tests in a couple of weeks. I know that chances are her clotting factors are probably affected by a dietary issue, with her problems with food and diarrhoea etc, chances are she is deficient in Vit K. I am still concerned though.

The other things she was having issue with before are still plaguing her as well, the noise/pain sensitivity, she is very anxious and unhappy, she still doesn't sleep well, she suffers from pain due to her EDS.

With all of it combined, every day is really hard work for her, I just want her to be happy and I wish the Docs could find out WTH is going on with her, I hate seeing her like this.

Thing is though, with for instance the IgA deficiency, the Docs say this shouldn't cause her any problems and yet she suffers from gastro intestinal problems and gastro intestinal problems is something that symptomatic people with low IgA have, so surely it shouldn't just be ruled out of hand?

I swear she has fibromyalgia and that some of her problems are down to that but they keep telling me that fibro doesn't exist in kids which isn't what I have heard (I also have EDS and fibro).

Also, she has little behaviour issues, she is good, but there are just some weird behaviours and its hard to explain.

I just don't know what to do anymore, the Paed is seeing her in January but they don't really seem to listen to me. The GP is brilliant and even though I wish I hadn't put them in school (we gave up home schooling due to health reasons) at least now we have a bunch of school teachers backing us up saying that there is something wrong with her.

I am just scared that all the odd little test results etc are going to add up to become something big, I dunno. I don't know what to think. I am just worried for her, she is a kid, she should be happy etc but she is not, she is really sad all the time, she hurts all the time, eating causes her pain, when she goes to sleep she gets nightmares, it just seems like every little thing she does has a negative impact on her. I didn't want this for my kids, and she is such a sensitive soul, its definitely not what I wanted for her........... Anyone got any ideas??????? I can hopefully answer more questions, I just feel like I need some ideas to look into just in case they have been missed etc, something to throw at the Docs so that they can consider it. I don't want anything wrong with her but there is obviously something going on, I just want to find out what it is.

[Jaimee]

I'm sorry you and your dd are going through all this!  I don't have any experience with the conditions you mention, but I do have a suggestion to do along with pursuing conventional medicine.  Ask around for recommendations for an excellent classical homeopath and pay the $200 or so for the full interview leading to a constitutional remedy.  I am scientifically trained and was therefore very skeptical of homeopathy.  I also never see any results from acute homeopathic remedies, but twice now I have witnessed a constitutional remedy actually work to clear up an unsolvable medical issue.

The first time was myself.  I had been suffering from attacks of internal pain for years and all tests came back inconclusive.  Finally it was decided that my gall bladder was not functioning properly and should be removed.  I didn't want to remove one of my organs especially if it was just b/c nothing else seemed to be wrong.  So, I went to a homeopath as sort of a last resort.  I had the interview (very strange, very personal) and my remedy was decided upon that day.  I took one dose.  I had an attack the next day.  And never again.  It's been 4 years now!

The second time was with my infant daughter.  She suffered from moderate to severe eczema.  The kind that was open and oozing, so itchy she would scratch until it bled.  She appeared allergic to every food she ate- flaring up all over her face.  We went to doctor after doctor.  Allergist after pediatric allergist.  Test, test, test.  Elimination diets.  Environmental allergen controls.  Creams, salves, prescriptions, this natural remedy, that old wive's tale...  Nothing worked.  So, as a last resort, I took her to a homeopath.  This time I was interviewed about her.  A remedy was decided upon.  I gave it to her once and three days later she cleared up.  She still flared occasionally with illness, teething, really dry weather, but I would just redose her and poof!  Clear.  I haven't had to dose her in 2.5 years and she is eczema and food allergy free!

The beauty of a homeopathic remedy is that you don't need to know what the medical cause of the problem is.  The idea is to put the body back in balance.  So, through the interview process, the homeopath gets an idea of what is out of balance and the remedy corrects that.  Once the imbalance is corrected, the body will heal itself.  Again, I don't know why it works.  But, after all the running around I did to doctors, all the money I spent on co-pays, tests, OTC stuff, and prescription stuff, the one time payment to a homeopath was SO worth it.  I highly, highly recommend you try it.  Your daughter will need to avoid anti-histamines and steroids, so if that is a problem, you may need to think about it further, but I can only say how worth it was for us.

Good luck!  ((HUGS))

[tireesix]

Thank you!!!!! We tried homeopathy but it didn't do much......... We tried a chiropractor but due to DD2s pain sensitivities and not liking to be touched it was a just big waste .

I dunno.....

Anything else??????

(I will look around again at the homeopathy angle, maybe it was just a crappy practitioner????).

[sbgrace]

I'd want to talk to immunology about possibly treating that IGA deficiency with (perhaps) immunoglobin if that is at all an option. My son has low IGA in his intestines and it causes a lot of GI infections and other issues. What we're doing is trying to boost his immunity generally and specifically in the GI system right now with: eipcore, colostrum (cow), florastor, healthy vitamin D levels, and other probiotics, optizinc, etc. 

My son was recently tested for a newly discovered metabolic condition. Part of the picture was mitochondrial dysfunction (causes fatigue and issues that can mimic fibro....) and IGA deficiency if I recall correctly with the effects on elasticity and GI function.

I guess my initial thought in reading your post is that there might be another metabolic condition as well (unless fibro and the IGA is part of the EDS picture).

This is information I put together about metabolics including mitochondrial stuff and the link with fibro symptoms. http://www.mothering.com/community/forum/thread/734501/mitochondrial-disorder-information-and-video

My initial suggestion is maybe run a Metametrix labs.

Urine http://www.metametrix.com/test-menu/profiles/organic-acids/organix-comprehensive The urine will look at metabolics and might uncover some things like mitochondrail issues and nutritional deficiencies. It would be my top pick I think. I love their stool labs but you know at least the IGA issue which undoubtedly messes with her GI function in major ways.

Stool http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects

[Jaimee]

Originally Posted by tireesix 

Thank you!!!!! We tried homeopathy but it didn't do much.........

(I will look around again at the homeopathy angle, maybe it was just a crappy practitioner????).

You had the full 2-3 hour interview with a classic certified homeopath and got a constitutional remedy?  Or was it more of a brief consultation where the homeopath suggested a remedy based on the symptoms only?  The latter would be more of an acute remedy, which I haven't had any luck with either.   I think the practitioner does really matter, so ask around for recommendations within natural parenting circles.  But it's also possible that homeopathy isn't the right course...

[tireesix]

It looks like the dietician wants to check for Coeliac again. When they tested her the first time they came up with the low IgA but that can cause false negs in the Coeliac test and with her having a lot of pain as a result of eating I guess its a possibility although lord knows how I am supposed to reduce foods further when she is hardly eating anything anyway.........

I will have another look around at homeopaths I think.

As for the low IgA, apparently there isn't anything they can do for it (well, I don't know, we are in the UK so its down to the NHS but from what I can gather, no one is willing to do anything about it, while I appreciate having health care that is free at point of service it does make it difficult when trying to see a specialist etc because you have to argue for tests and for referrals).