Just now beginning to recover..

[shewise]

I would really appreciate any advice anyone has to offer. My 11-year-old daughter has had two PANS attacks, the first back in November of 2012. That one lasted until April, 2013, and I think was the result of the flu shot. We are just recovering from the second attack, which started in August, 2013. She got food poisoning in July and by August, had a full-blown OCD attack with serious oppositional behavior. The oppositional behavior in the past two months is mostly gone, and a lot of the OCD is gone too, particularly order and placement issues. She still thinks many things are germy and washes her hands often. She seems to have some post traumatic regarding the food poisoning incident, because she won't ride in our car since that is where the food poisoning reaction occurred. We considered IVIG treatment in Chicago, but we couldn't see how we could ever get her there in her condition. We used the wait and see approach, and she is improving now. I plan to get her counseling in the spring with a therapist trained in treating children with PTSD. But I am wondering, is there anything more we should do now? Is there sometime else we should be doing for her? She is completely gluten free for the past year. This past year and a half have been so terrible for her (and us). I don't want her to get any lasting damage or effects because we didn't get her treatment. Any advice is appreciated.

[Missmom]

Is she taking any meds or supplements? What labwork has been run. Many on this forum are running 23 and me to look for deficiencies. Glad she is improving but I know how hard it is not knowing if she will relapse. My son takes abx daily, but every time I try to stop giving them I am on edge wondering what will come next.

[shewise]

Thank you for that advice. I think DNA testing is just what we'll do. Digging through posts has made me think she may have Lyme. She got bit about three years ago, but I thought it was ok because I did daily tick checks and found the tick the same day (stuck, though). But now I wonder? She has been fighting H pylori these past eight months, but we mostly have that licked with two months of mastic gum. She refuses any meds or supplements so I have to slip them into her food. Mastic gum wasn't easy with its powerful flavor but ketchup and mustard, raspberry jam are all great. I just don't know what supplements to give her. I've given B12 mostly. I really haven't tried anything else.

 

I am so shell shocked after these past horrible months that I fight daily to keep my cool about what could happen. I just sort of accept the OCD now, compared to the unbelievable horror of rage and opposition that we faced, but I don't want her to get too comfortable with it. It has been toned down though, so that's good. I can't begin to express how it feels to know that there are people who understand and have been through or are going through the same things. It helps so much when you feel like this and are haunted by nightmares and horrifying memories as well as the day-to-day struggle that goes on even when you start to recover. Sure is nice to know that people here understand.

 

We certainly didn't get any help from any medical professionals around here. They insisted on giving her the stool test for H Pylori at the same time as she was taking the Prilosec they ordered (with huge side effects that practically destroyed her). When I told them it would throw a false negative and could she please take the blood test, they told me to consult the Internet less and a real MD more. Of course it came back negative ironically with a note on it from the testing lab that said if the patient is on a PPI, the test could come back falsely negative. We had to order the GI effects test ourselves, which lit up, and then the gastroenterologist scoffed at us for giving her mastic rather than the triple bullet he tried to give her. And then my daughter's regular Nurse Practitioner called CPS because we would not give her Prozac or put her in the juvenile mental ward when she ordered us to. Really helped having to deal with all that in the midst of a huge PANS explosion. CPS dropped it after three months, but the whole thing practically buried us.

 

I've read on these forums about Dr. K's willingness to treat over long distance. I wish I had read that six months ago. I literally felt like there was no one who could possibly help us.

 

I definitely think finding the genetic missing links is the answer. And after reading on these forums, I'm getting her checked for tick-borne illnesses, which not one medical professional has ever suggested in the past year and a half. I want her to sleep in her bed, go to school, go anywhere in the house without being afraid.

[rowingmom]

Good for you. Start thinking outside the box. Those on the inside will be of no help.

[Missmom]

I know it is heartbreaking to see her go through all of this. I have been fortunate to find great doctors. Our pediatrician thought I was crazy at first, but I begged and pleaded with him to run the lab work. He was certain that strep was not a factor when not one but two rapid tests were negative for strep and the throat was not red and no fever. Anyway a few days later he called and said wow! You were right, it was strep.

 

Anyway, what I am trying to say is that your mom instincts are way more important than some doctors opinion. Do whatever you have to do to fight for your daughter. The help you will receive on this forum will be invaluable. Search for doctors in your area. If there is any way to get her a trial of abx that would help you to see if you notice any improvements.

 

Take care and keep us posted.

[searching_for_help]

I'm not sure if she's still on the Prilosec, but if so, make sure she's getting some magnesium. Here's a quick read by a pharmacist about PPI's and acid reflux drugs and how they can cause deficiencies:

 

http://www.dearpharmacist.com/2011/03/28/dangerous-drug-mugging-effect-by-acid-blockers/

 

Absolutely drives me crazy that docs pass these out like candy, but I've never heard one mention the problems they can cause. Most health care workers generally don't seem to understand how the body functions (in my opinion), especially the gut, where all of our vitamins and nutrients are absorbed and used throughout out bodies.

 

I don't have time to look it up right now, but I've read recently that research is finding that many times the people that have symptoms of high acid in the gut, when tested, actually have LOW acid. Imagine the deficiencies happening when they have low acid to begin with, and add a drug to that. Ugh...

[riffleshell]

Your daughter is lucky to have you on her team. Sounds like you have all been through quite an ordeal.

 

One small thing you might try, if you haven't already: I would see if you can mix in some probiotic powder in her food. I find that they help greatly with my son's anxieties.

[Rachel]

Hang in there. It's hard to find doctors that will work with you. I am waiting on my son,s 23 and me test results. Have you tried any of the Gummie Supplements? I know they may have a sweetner in them but maybe you could do some supplementing that way. Or maybe mix some things into a fruit smoothie