Update and more questions

[zinto]

Hi everyone ,
I really appreciated your comments and questions last month when I asked your thoughts re the environmental doc protocol my 7 year old son was on .
I don't have all the answers to the questions you asked but I do know pandas was ruled out ( this remains open in my mind though )
He completed the course of anti biopics and other supplements I listed atwell as continuing dairy, gluten , processed food free diet and Epsom salt baths. Worsening has continued and now instead of just the one main eye Blinking tic he also has a low grade vocal and a fairly pronounced neck head tic too .
We went back to our doc who said right let's try something elseamd he have us another amino acid combo a taurine , inositol and GABA mixture plus another probiotic .
A week in and he is worse or just as bad . The doc said that if there is no improvement in one week then switch him over to ' plan b ' which is a zinc and vit b6 combo . There is also a plan c to try out and then he wants us to see what worked best and formulate plan d .
I have been reading about pyrrole disorder and wonder if that is our issue?
I have also been reading about essential oil treatment being successful anyone have any thoughts on that?
I am happy to keep trying all these things but just worry that given we are only trying things for a short time it just isn't enough .
Im also keen to try acupuncture but worry it will hurt him. Also worry that the overlap of new things to try wil mean that we don't get time to monitor what did and didn't work over longer periods
It's all such an unknown !

Edited March 23, 2014 by zinto

[searching_for_help]

Sorry, I'm not up on your history. Have you ruled out the main infectious triggers with testing? (Many of these kids don't show the typical symptoms, so docs should test and not assume!) Has the gut been tested for signs of yeast or clostridia overgrowth? I guess I'm just wondering what all your doc has ruled out from actual testing!

[zinto]

he has had microbial faecal testing, hair analysis and blood work which ruled out everything except for being slightly high in heavy metals. all else appears ' normal'...which makes things harder.....

[Pilbara]

Does seem to be changing things quite fast. I think it took my son a month or so before I noticed any changes and it was a slow reduction to the tics, not an instant fix. He still has minor tics, but we are extremely happy with where is and know that the supplements do have a positive impact for him.

[TeamTyrion]

Hi Zinto,

One thing I have learned from this forum is the "low and slow" idea of supplementation introduction. It is really important to introduce supplements one at a time (with low doses at first, then slowly up) and see how your child feels after 2 - 3 weeks. Only then should you introduce something else (again with low and slow in mind).

 

I learned this the hard way recently when I just jumped into GABA at a high dose and boy, that did not work out well for my Son. I have since read (in the PANDAS forum) that there are others who did not respond very well to GABA.

 

Also, my Son responded quite badly to Epsom Salt baths which surprised me considering how beneficial it seems to be for so many here. We have since done 23andme genetic testing and learned that he has CBS issues, which means that he will likely not tolerate sulfur intermediates (Taurine, NAC, glutathione) very well, or the epsom salts (which is magnesium sulfate).

 

So, now I go really slowly and one-by-one with the supplements so I can monitor my Son's behaviour carefully.

[TeamTyrion]

Oh, and be careful with probiotics too - so many (including my son) have had adverse reactions. I know there is the die-off effect (herxing) that can cause a negative reaction but if the reaction is too strong you may want to decrease the dosage, or even try a new one. Chemar recommends using Kefir (http://lifeway.net/P...r/Original.aspx) by Lifeway. I am just starting to try this out, but again, I'm monitoring very closely because I generally wanted to be casein-free.

Edited March 24, 2014 by teamtyrion