Thursday, September 11, 2008

Response to Jeanne and Daharja...

Quickly.. today is turning into a crazy day (I just realized that Salamander's IEP needs to be revised and reissued by September 27th!!! and this is a really big year for us as we need to address transition to middle school/appropriate middle school program. So yes, I am freaking out big time). And I have the usual paying work stuff that needs to get done, and I need to make a dent in all the school related stuff (art supplies, snack packs) that I need to get in place.

Jeanne - thanks for linking to the good (gut) stuff post.

Daharja - the easy answer is that for my boys it took much more than GFCF to address stool issues. I have a list of foods that we avoid or use only very sparingly on my GFCFetcFKitchenChemistry blog (not saying that that is where YOU are going to end up - you made changes for your child at such a young age ... Salamander was 6 years and 3 months old before I started changing HIS diet). I also have done and continue to do a TON of gut healing/gut balancing work. It's a loooooong term, work in progress kinda thing (wish I could make it easier for you).

Is your child consuming soy and/or corn? It may be worthwhile to experiment with eliminating soy and corn (I know, I know) to see if that improves the poo situation at all. Another dietary approach to seriously look into is the Specific Carbohydrate Diet (Elaine Gottschall) - I probably would have gone that route for Potatey, if not for the fact that SCD tends to be a fairly high protein diet. Protein, when digested, can add to a person's ammonia load. And my boys have trouble in the ammonia processing department, so I need to keep their diets low protein.

I have not had time to look into the qualified DAN! doc situation for NZ. If there is a qualified DAN! doc anywhere in NZ, it may be very worth your while trying to get your child to be seen by this person (and yes, I do understand travel, money, time constraints - we are on the East Coast of the USA; about a year into biomed for Salamander I ended up working with a DAN! doc all the way over on the West Coast..TG this person did traveling clinics with the Great Plains Laboratory folks.. ).

I will write more as soon as I have time.. what I may do, with your permission, is use your comment as an intro into an actual blog post. Please do understand that I am not an MD, I am just sharing what I've learned for my two boys over the years as their MomMD...


At 6:41 PM, September 11, 2008 , Blogger daharja said...

Thanks for the response.

We're currently keeping him vegetarian, but with a fair number of eggs for protein (good quality, free range eggs). We don't eat a lot of soy, as a rule, but he does get some tofu - maybe a few grams a week, not much. And we don't tend to eat the processed soy products that a lot of vegos eat, instead eating more beans and other more natural sources of protein.

We *did* notice his behaviour going AWOL when we replaced his rice milk with soy milk a couple of weeks ago. The soy milk was gluten and dairy free, but we switched back to rice milk and once again his behaviour was fine. We'll re-introduce it again (the soy milk) to confirm it is a problem, just to be sure before starting to eliminate soy. So you may certainly be right there.

All of this is hunting in the dark, isn't it? None of the mainstream doctors have been of any use to us, and the next step is naturopaths and homeopathy. We'll give anything non-dangerous a go, and simply see what works.

We *have* noticed behaviour improvements with high dosages of B12, and are going to try a high doage multi B vitamin next, to see if that helps. We're also trying to add essential fatty acids to his diet, but hiding them in foods is a nightmare.

We haven't noticed his stomach being bloaty, but his stools are definitely running and non-solid, so something is amiss. feel like if we get his BMs normal, we'll be halfway solved - and then toilet training may actually be successful! :-D

Oh, for the easy life! Still he's an odd one I wouldn't change for the world - so mathmatically and musically gifted we don't know what to do with him, but still having problems with basic grammar. *sigh*

Well, the world would be boring if we were all neurotypical, eh?

There are no qualified DAN docs anywhere in NZ AFAIK, but if I can find a GP who is helpful that may be a start. Currently the GP we hae is lovely, but thinks we're a bit cuckoo for suggesting that we can cure my son's autism. As for me, I think *she's* a bit cuckoo for not wanting to try! Our kids deserve the best - all of them, and all of us in the middle of this horrible epidemic.

Love and thanks,

Daharja (Leanne)


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