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HelenJenn

PANDA REGRESSION

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We have taken a path of treatment that involves following the GAPS diet(Natasha Campbell Mcbride) and treating infections, minor sore throats etc with vit c to bowel tolerance. Our son had presented with OCD(mild Jan 2011 to increased in Aug 2011) and with this approach we managed all symptoms except he had still refused to use bathrooms other than those at home. Over Christmas(2012) he had a cold and I got quite ill with a flu. While I was out of commission my husband did not follow my protocol for vitamin C and our son regressed to the place he had been 1.5-2 years earlier. It has now been about 10 weeks with no reduction of symptoms. We are back on our diet(stage 4 gaps) after giving it up in Jan. I am not back to supplements yet but will start to include again soon.

 

Just wanted to share this. It is sooo hard to manage regressions. I had worked day in and day out to get him to where he was. There are some positives out of this. My husband now sees what happens when not cared for with diet and vit c. As well it affirmed for me what we are dealing with(PANDAS). I had prevented all reactions(regressions) by starting vit c at the beginning of sore throats etc.

 

I also just wanted to connect and sympathize with parents and kids going through this - the up and down nature of it, the endurance to work with and heal, the extreme crisis this puts a family into. I see that we can become closer through it but it is hard work, isolating, and the rewards are not always forthcoming.

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If i understand you correctly, you don't want to or cannot give abx. How about anti-inflamatories like Ibuprofen and steroid taper? have you tried those?

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We have taken a path of treatment that involves following the GAPS diet(Natasha Campbell Mcbride) and treating infections, minor sore throats etc with vit c to bowel tolerance. Our son had presented with OCD(mild Jan 2011 to increased in Aug 2011) and with this approach we managed all symptoms except he had still refused to use bathrooms other than those at home. Over Christmas(2012) he had a cold and I got quite ill with a flu. While I was out of commission my husband did not follow my protocol for vitamin C and our son regressed to the place he had been 1.5-2 years earlier. It has now been about 10 weeks with no reduction of symptoms. We are back on our diet(stage 4 gaps) after giving it up in Jan. I am not back to supplements yet but will start to include again soon.

 

Just wanted to share this. It is sooo hard to manage regressions. I had worked day in and day out to get him to where he was. There are some positives out of this. My husband now sees what happens when not cared for with diet and vit c. As well it affirmed for me what we are dealing with(PANDAS). I had prevented all reactions(regressions) by starting vit c at the beginning of sore throats etc.

 

I also just wanted to connect and sympathize with parents and kids going through this - the up and down nature of it, the endurance to work with and heal, the extreme crisis this puts a family into. I see that we can become closer through it but it is hard work, isolating, and the rewards are not always forthcoming.

 

 

AMEN sister! I had ds at such a good point. Do to, at least in part, to a family emergency, everything went off track and so did ds. I would think that getting back to that good point would be quicker than the last time, but that does not seem to be the case.

Regarding C..look into oxalates..i think. You may be at point where it is creating an amonia type thing in the body?? idk

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his initial ocd symptoms only came on after having a course of antibiotics. we feel that it is his gut that is creating his issues. it was not only the antibiotic issue we encountered but also that he had had his initial symptoms(frequent urination) after eating at an event-wheat, dairy, sugar, strawberries. we were not sure what was the trigger but it happened within about 10 min and lasted for 6 weeks. so we could see his symptoms were triggered by food and for us with antibiotics. due to his rapid decline with every small sore throat etc i researched natural antibiotics and found vit c to do the trick for him. the gaps diet works at the level of healing the gut, immunity, etc etc. this fit with my understanding of things and worked for him.

 

today... 10 weeks from his regression... i saw a small reduction in symptoms. not sure but fingers crossed that this episode may be settling down again.

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