Heartbroken--I feel like were losing ds, age 6

[rowingmom]

Certain children with specific genetic predispositions can not handle all the crud that is in our environment and food so they fall apart physically and psychiatrically AND (infections can push them over the edge).

 

So wonderful to hear of your DS's improvement and how right you are!

 

Many LLMDs are starting to realize that the infections are not the basic problem. These infections are everywhere and most people have the immune capacity to fight them off.

 

But lately with the increasing number of required vaccinations and the amount of pesticides now sprayed on food, it's small wonder our little ones' bodies can't cope.

 

The microbe is nothing; the terrain is everything.

 

Improving the body's terrain is as important as killing bacteria.

Edited July 22, 2015 by rowingmom

[Sirena]

Hi All,

Thanks for encouragement and support. For the record, we are still very new with this diagnosis, but we are lucky that we have a diagnosis relatively quickly (1-2 months from major onset). We have done Lyme and Co-infection tests, but all normal so far. I was worried about those even before all of this especially because my husband has Anaplasmosis. I think we've now ruled out just about all other likely alternative diagnoses and so I'm settling into a PANDAS diagnosis.

 

So, game on! Somehow we'll get through it... Right?!!

 

Holding on,

Sirena

Edited July 30, 2015 by Sirena

[MaryAW]

If ibuprofen was helping, you should continue with it. I had my DD on it for 2 years with no negative effects. I would do 2 doses daily - one before bed, and one after breakfast. The best things we did for our DD (who is a real standard case of PANS) was to raise her vitamin D level to over 50 ng/ml. I use NatureMade D3. HUGE improvement. The PANS docs want it ideally between 50 - 80 ng/ml. This takes monitoring thru bloodwork. If he is below 30, try 3000 IUs daily to start. Once you get it up in the range, you can reduce the dose(my DD is now on 2000 IUs with a level of 70 ng/ml). The next huge thing for her was Omega 3s. I give her Nordic Natural Ultimate Omega Junior - 2 pills/2X a day. HUGE improvement!

 

No flares for her since January, and that was nothing major. Her overall health has improved too. God bless and good luck!

[michelleb]

Can you tell me how you treated the Bartonella and Babasia?

We are not getting good response from IVIG or PEX. there was some improvement - the violence and rages have gone away, but depression and suicial obsession continues. I am unable to get him anywhere to do a blood test. He used to have no problem with needles. Now he won't leave the house and has an absolute horror to needles, doctors and hospitals. He won't go. I would have to force him into the car with two other people to hold him down, he would never sit still for a needle to go in and would in fact pull it out if it did.

Anyway, I did get doc to prescribe doxy which he was on for 90 days. That did coincide with PEX and claiming from rages but hard to tell if that is what helped. He continues on a prophylactic dose of Zithro.