When diet and supplements fail

[Guest bean]

My 7 yr old daughter has been on a strict elimination diet for almost three months now. No gluten,casein,egg,soy,citrus,yeast and more. She has been unbelievably diligent about sticking to the diet. She is taking l-carnitine, magnesium taurate,Nystatin, caprylic acid,DHA, probiotics and good vitamins. This is under the supervision of a DAN doctor. She did not test positive for any Mercury but was positive for lead and aluminum. I started a detox but it was about the same time the tic was starting so I stopped for now.She sees a therapist and also goes for cranialsacral therapy.Things had been going very well with one week of minor flare ups in September. We are now on about a month roll of her arm stretching tic which I hadn't seen in probably six months. She just got a fabulous report card and coference from her teacher.

The only thing I haven't tried is the screen elimination but I don't have the heart to take away something else from an innocent 7 year old. I really don't see a correlation with the screens.She actually seems more relaxed when watching TV.

She also is on clonidine which I was hoping to get her off once her diet and gut were stabilized. Clonidine is known to help with motor tics more than vocal tics which leads me to believe the med is not effective anymore. So was it really the med that was helping and the diet all for nothing? I feel like I have left no stone unturned, I have spent thousands of dollars-out-of -pocket in medical expenses and for what? Any other suggestions would be appreciated. I feel like there is nothing left to try.

[Claire]

Sorry for your lack of success. I assume you are also eliminating artificial ingredients? I think it is critical to continue the detox, though our DAN doctor did it slow and gradual. The lead/aluminum detox and yeast are definitely needed.

 

Did your DAN doctor retest for the yeast? This made a huge difference for Heather's son. Unfortunately yeast can be very stubborn.

 

My other suggestion is to do a labcorp.com test for methylation. undermethylation seems to be common with tics and this needs separate treatment. Ask your doctor about TMG. Finally, a pyroluria test (sorry I can't remember if you did this).

 

Re screens--As you know based on our experience---I saw no correlation with TV/screens until I removed them. Plus this was the ONLY thing we had to do for our son. Guest_Jennifer's son actually seemed BETTER while playing computer, but the major tics all disappeared when she removed it. My son was 8 when we removed screens and it wasn't cruel at all. I just loaded him up with comic books and Harry Potter tapes during the trial, and made arrangements for a ton of fun activities with us and friends. For him the diet restrictions and supplements were the 'cruel' part, but every child is different. You know your child, and if this is too cruel, you could just go to COSTOCO and buy a cheap LCD TV/computer monitor and try it with the brightness down (no visible difference) for a couple of weeks and see if any improvement at all in tics occur and then reassess TV as a possible trigger. However, that is only removal of a trigger--you still need the healing.

 

 

 

Claire

[Mustang Carole]

Hi,

Give the diet more time . The gut needs to heal and it just takes time.

We are all in a hurry to get our kids well, unfortunately again, need patience and deligence.

The casein is elimatinated in a few weeks and all gluten takes 5 months to clear.

Then you have the additives, the dyes, the hormones in the meats, the cooking with the aluminum, the microwave cooking and the plastic seeping into the foods, the oil molecules turn to bad stuff. It never ends.

Just think " Grandma " and how she did it, cook in the stainless steel pots and the oven, try to reduce the frying and BBQing.

You are doing a great job with the vits and working with the DAN, but you do have a road to travel and this is all so new that no one really has a roadmap to follow. Welcome to the wanderers who are at least going some where in life,,,,we will all get there eventually, it just takes time !

We have been on the diet for 2 years and just found out his gut is NOT digesting and not healed either. So, been there, done that and stil trying,

DO NOT GIVE UP and do come here again. We need to continue top learn from each other/

Blessings to you.

Mustang Carole

[Ausclare]

Hi Bean,

Does your Dan Dr know about the effect of Salicylates and amines and msg in fruit and veg. These are naturally occuring chemicals. A lot of our natural therapists have rarely heard about these things. I know that it is hard to comprehend eliminating more stuff, but sometimes it just has to be tried.

 

One of our hospitals has released a cookbook for allergy and intolarence sufferers, it list all the recipes with egg free, or dairy free, wheat free. It also focuses on the salicylates and amines in the food. If you need a copy, I would be happy to post one over. Just email me at home. I'll be offline until next week.

One of the most crucial aspects of eliminating is definately natural and artificial colours, flavours and preservatives. I agree with Mustang Sally when she suggests that you cook like your grandma or like her grandma!

 

Our kids problems are definately the effect of the last few generations eating adulterated food.

Water is a big issue as well. make sure you use a good filter. Over here we are mass medicated with flouride, whether we like it or not. I don't think this is great for our bodies either.

Hope I haven't confused you. It is a slow and painful process, but the results are worth it in the end.

Good luck

Clare