Atlanta conference

[ashley]

Thanks, cara. We have not made any dietary changes yet (just diagnosed last month and had hoped abx alone would fix things.) My DS is vegetarian, so I'm hesitant to remove gluten and dairy from his diet, not to mention soy and corn as Dr. Bhakta suggests . . . but if it makes a difference then we will figure out how to do it I guess!

[cara615]

I will tell you this. My ds had his first real exacerbation last May (he mad mild symptoms before this) and at the time we did not suspect PANDAS. I decided to heal his gut through diet and supps. We went GFCF, corn free and low sugar. We killed off yeast and partially addressed methylation. Within 3 months, I had him back to baseline. This was without antibiotics or any other wetern medication.

 

Then in November during his 2nd exacerbation, we discovered the strep trigger and PANDAS dx was given.

 

So, I can attest that the diet changes, at least for our son were integral in helping reduce his symptoms. Fankly, the effects were dramatic.

[ashley]

That is really encouraging. My son is in what we think is his 2nd episode. Had 1 episode of tics last year but no other symptoms that we recognized. Last month tics returned along with a host of other issues and he was diagnosed with PANDAS. Trying to educate myself as much as possible and this forum is immensely helpful. Thanks so much for your advice!

[cara615]

You may want to consider running an ALCAT test. This tests for food and chemical sensitivities/intolerances. Then you can really know what to remove from the diet instead of just guessing. I will say that gluten/dairy and corn are the three bigest culprits. Soy is up there too but since my ds only had a mild sensitivity to it, we keep in in his diet in small amounts.

 

If i removed EVERYTHING that was on the ALCAT test in the severe/moderate and mild columns, my son would be eating air.

[3bmom]

If you choose to keep soy and corn in your diet PLEASE make sure it is organic. Over 85% of corn and soy in America is Genetically Altered and has huge amounts of pesticide with it. This pesticide Round-Up, just like the one in your garage for weeds is also sprayed on wheat to make it dry faster.

 

Round-Up has an ingredient called glyphosate which collects the weeds minerals so it dies of malnutrition. It also collects our minerals too wreaking havoc on our gut and immune system.

 

Our Dr has a 6 month wait list and will not continue you as a patient unless diet is followed. I am not saying it is easy, and is a journey, but our allergy numbers dropped from life threatening (which we had no idea, except change in behavior) to near normal.

[ashley]

Thanks, cara. We have a followup appointment with the pediatrician next week and I will ask about the ALCAT testing.

 

3bmom, the more I learn about all of this the scarier and more overwhelming it gets. We do our best to buy mostly organic, but looks like we may need to step that process up and go 100% organic. Thanks for the advice.

[cara615]

All the soy my son gets is organic. I speicifically buy foods that say non GMO project on them. This is why my food bill is over $1,500 a month!

[airial95]

I too wasn't very impressed with Dr. Niccolades presentation, she did seem to push psych meds indiscriminately, however, one thing that she said made sense, and even Dr. T somewhat agreed with it. Psych meds may be absolutely necessary if you are in crisis mode (when the child is a danger to himself and others). My son went through his worst crisis stages (rage, etc...) as a very young child, so we could still control him. However, when he is 15, 6' and 170 lbs, I could see where we may need to resort to something to keep him safe until we can get the PANDAS treatments on board.

 

The reason that struck me is that we all often shy away from these types of drugs (rightfully so) forgetting that there may be short periods of time where they may be needed in order to even GET the child the appropriate PANDAS treatment.