putting together the piece

Read Doris Rapp "Is This Your Child?" for a full explanation on allergic responses and behavior.

Hi Everyone, DS8 is currently in severe PANDAS flare caused by stomach virus. Intrusive thoughts are worst ever very violent and sadistic in nature. I am trying to address the brain inflammation with ibuprofen and EPA (2 caps ) every 4 hours. Symptoms are starting to stabilize with this protocol so far. Also using fresh blue berries, pineapple and coconut oil for cooking. Already GF and DF. If anyone has any more ideas please let me know. This is a rough one.

Many children have dysgraphia (deterioration of handwriting) during exacerbation's. Our kids need an OT for fine motor skills. Also there is a great deal of time when many PANDAS kids have short term memory problems, cognitive processing issues, deterioration in math and or science skills. My DS8 even has visual distortions which really become apparent during a flare. These are all learning issues and really should be addressed with an IEP. Additionally an emotional support person should be assigned to help get our children through the anxiety and panic attacks that can flare. Our school tried to offer a 504 to us as well. I read it very carefully and refused requesting mediation. It was not an easy accomplishment but our DS8 now has an IEP and I have far more control over his education than before. There is hope. I suggest a book called from Emotions to Advocacy from Wright's Law. It will help you understand and negotiate the Special Education system and the legal part.

We use coconut oil for everything except salad dressings in which we use extra virgin olive oil. The coconut oil that my DH buys is the more expensive organic refined oil because much like your DS I hate the smell and taste of coconuts. Once DH got the regular stuff and I just couldn't eat anything cooked with it.

DS hates the taste of coconut oil, but we found it in capsule form. We've been giving it to both DS's for about 1 1/2 years. Stopped for several weeks as a trial, and during that time he started getting depressed, and having more neuro symptoms. Just started him back on it 2 days ago. Seems to be happier. I don't know for sure that it's related, but for now, at least, I'm going to assume that it is.

I am really researching food allergies and sensitivities. Nightshade family veggies are like other things only an issue if you have a sensitivity to them. They are one of the more common triggers like gluten or dairy or corn but not necessarily a problem unless you have a sensitivity. Best way to know for sure is to try elimination diet.

Thanks for the responses. I really appreciate the explanation about hyper-immune kids because while my DS does get everything under the sun his symptoms are far more behavioral and emotional than physical. I have been kind of thinking that there may be some universal issues which if addressed would certainly help our PANDAS/PANS kids. For instance gut health. Our entire world has become much more poisoned than it used to be, perhaps our kids are more sensitive even if it isn't glaringly obvious. I recently took both my kids off of all gluten and all dairy and restricted processed sugars. Guess what, both kids the milkoholic PANS child and the picky bipolar (I only want sugar or crap eater) are not only complying they are (dare I say it?) happier. I think they both have milk sensitivities and it has compromised the gut. If the gut heals then the neuroendocrine system should start to reset which should help reset and strengthen the immune system. But it's like peeling an onion. This is just the start. I also suspect that there are many of our kids with chronic infections. Bacterial like Lyme, mycoplasma, Bartonella, parasites, viruses, etc., all causing more immune dysfunction which of course causes more inflammation. Inflammation which could be addressed by immune modulators but won't be cured by those modulators unless the underlying infections are addressed. I think the subject of methylation really needs to be looked at in depth. Because genetic markers or not it makes sense that there is some type of disruption here. Look at our symptomology. These are my thoughts. Feel free to agree or disagree I believe that it will be a parent driven effort which will show us the way to address this best. Research is great but I don't have time to wait till everyone stops arguing about the things we as parents already know.

Hello All, I have been going round and round with a few questions and I hope your input can help figure it out. 1. It seems to me that my DS has always caught everything that was going around ever since I can remember. Are you kids as susceptible to infections as well? 2. I just finished reading 2 books which our new doc. highly recommended. I believe my DS may have a few sensitivities (food and otherwise)that just maybe compromising his immune system. Has anyone else thought about this possibility? Is so how is it going? 3. I keep reading about all the IVIG treatments (with prophylaxis antibiotics) that work but they seem so temporary (some more so than others). Could it be that there is something beneath the PANDAS that keeps our kids so vulnerable? Or is it simply a reinfection? 4. I guess like everyone else I want to figure out where the core of the issue is. 5. Please give me your thoughts. Thanks

Thank you!

Hello Everyone, Does anyone know a good LLMD near Hamburg Pa? I suspect that at least 3 out of 4 family members have Lyme and co-infections. I had the bulls eye rash a couple years ago and only got 10 days worth of abx. Now I have many suspicious symptoms. My PANDAS son seems to, at the very least, have chronic mycoplasm P. infection but regular doc. seem to think IGG means past exposure only. And my husband really should be checked too. Please help us find someone good if you can. Much Thanks, Michelle

Lemon Balm Force. I have never heard of that before but I will check it out. Thanks.

Thank you Nancy, Crisis didn't want to assist when I said it was a medical issue with neuro-psychiatric symptoms. They practically said "best of luck and good bye". I will take him tomorrow for a medical eval at an ER that may have some enlightened doctors. Right now he is resting, gave him some melatonin which will help him drift off. As long as he is safe I am happy to try to find a better option in the morning. Can't wait too long though he is definitely destabilizing overall.

Our ds is flipping back and forth emotionally really fast. Also dealing with "voices" or intrusive thoughts of SI and HI. TSS is calling crisis. Is there a hospital that can handle PANDAS? I don't want Psych. drugs for him he needs abx. protocol maybe IVIG or steroids. Is there anywhere in eastern central Pa. that can handle this?

Thank you Lilly! I made an appointment with a doc. who claims Lyme literacy I hope this will give us some answers. From what you treated with sounds like I may be on the right path. I hope.

Hi Everyone, Sorry to interrupt but mt DS age 8 complains a lot about feeling weird, pain in the belly/stomach, dizziness and feeling like a bullet is ricocheting in his head. He says this both on and off of abx (no other meds in play). Has anyone else heard these things when not herxing?