SSS

If he just has a week or two until he switches schools, can you pull him out? I would. It sounds too damaging. I'm sorry if you work outside the home and it's conflicting-

Your son is okay with getting scoped? Sounds invasive. I would think it much easier to do an IgG food panel. A scope will not tell you WHICH foods are causing the issues. Yeast/ Candida is one way to cause a leaky gut, it can puncture holes in the GI tract. Anyway, trying to help. No matter what the 'label' ie: ADHD, ADD, getting the GI tract healed can be a huge part of the picture, and you certainly seem to be struggling with this issue now, and in his past.

For yeast, a urine test from Great Plains Lab or Metametrix called an Organic Acid Test http://www.greatplainslaboratory.com/home/eng/oat.asp you can combine it with a new IgG food allergy panel. I understand how hard it can be with the food issues. Gluten is very, very often inflammatory, and dairy. It's much easier now days to substitute gluten and dairy, lots of options. I also stopped giving my dd Ibuprofen, I confess, I used it a lot, but she started burping frequently, and I worried about her GI tract. I had her 100% GF/CF/SF for a solid 2 years, then put her back on all foods with digestive enzymes. It seemed okay for awhile. About another 2 years went by, and this year in school, not as sharp as she used to be, pot belly again, I got lazy with fast easy prepare food, and I wondered. But I waited, thinking she would fight me going back, and more money on my huge groceries. But I felt guilty, I think I knew. Finally, I put her back 100% GF/ CF about 6 months ago again, and you know what? No fight. I was shocked. The girl who loved pizza. No fight. And her thinking is clearer. Pot belly gone. And her diet is much, much healthier. As you probably know, it has to be 100%. Just cutting down on gluten or dairy doesn't cut it. That little bit still inflames. There is also a very interesting theory about leaky gut and the food proteins then hitting the blood stream, causing an opioid affect on the brain. Which causes the 'give me, give me more.'

Used to be severely allergic to? As in IgA allergic? That is quite a few allergens. Or was it intolerances? (IgG?) I don't remember your DS's age, but I think he is young, and it's easier to implement better food changes when they are younger. Have you checked lately for yeast? Eating, eating, eating trying to feed it is a sign. Easy to get yeast imbalance if on antibiotics. If you change the food you have available at your house, they are left to eat what's available in the house.

That's a good thought from Nancy. I also thought: How's his diet? Overgrowth of yeast, food dyes, too much sugar, too much carbs made my dd hyper. Going GF/ CF made it easier to get more proteins and healthy food in her.

I also no longer expect my dd to never have a more complicated emotional life than a completely healthy neurotypical child, a child who never had PANS. However, my dd was seemed to struggle more from birth (colic.) We were never 'normal, 100%, then woke up a different child.' Having said that, we are no longer in debilitating, dark days, she behaves 100% beautifully in her typical 3rd grade public school, and has no accommodations. We no longer treat her medically for infections, or prophylactic. It is not easy. She can 'pass' in the outside world, so far. But there are issues. We are taking it one day at a time.

No, there is no history of PANS, strep infections, or mental illness on either side of our families. I believe my unknown and untreated Bartonella infection caused me past anxiety emotions in my adult life. I have 2 other healthy, completely neuro- typical children, so it's hard for me to get behind a genetic component in my dd's neuro issues/ illness. What does seem clear now, looking back, she was born with infections, and then had aggressive and excessive CDC vaccination scheduled shots and her immune system came undone, during formative years in childhood.

http://www.ageofautism.com/2014/01/dear-autism-and-pandaspans-researchers-listen-to-the-parents.html#more

Hi- the IVIG high dose is a big deal (what makes it 'work'), sure you know that... Going through a medical procedure was the scary part for me. Needles, medications, amped me up with anxiety for her, had to pull out my best actress skills, coupled with the worry could she handle it? She did! Kept the IV thing-y in her arm overnight, too, as to not get re-stuck. Congrats on 'catching' PANS so fast- Hang in there, if we could get through it, so can you :-)

I had strep B with my first child, my nearly 16 year old son, who is 100% neurotypical, never an issue, thank you God healthy and thriving. 2nd child, my PANS dd, no idea about strep B as she was a planned C-section, full term baby. However, hours after she was born, the hospital, without asking me, gave her a shot for Hepatitis B, a sexually transmitted disease, and in the year 2005, that shot contained mercury. Did that throw off her immune system? Or the subsequent 3-5 CDC required vaccinations at 1 time every 2-3 months as an infant? Or was it congenitally passed Lyme and Bartonella combined with excessive vaccinations containing mercury, aluminum, formaldehyde, animal DNA, embryo DNA? Don't know. She had colic out the gate, never crawled, poor, poor child seemed unhappy and struggling. She did have a wicked case of strep at age 3, given amoxicillin, which is weak for strep, maybe it never cleared, never double checked, assumed and trusted the Dr.s. Too hard to play the guessing and blame game. I am glad I am done having children, grateful 2 out of 3 are happy and healthy. Also grateful for my gorgeous PANS dd, of course. Came here to teach me, that's for sure.

Hi- my dd seems to have congenital issues, so no glaring regression/ overnight, but wanted to mention she did have selective mutism, and the first 'health' thing we did was go 100% gluten and dairy free just as she turned 4, and to our amazement, it opened her up and she started speaking to children in preschool and stopped just whispering in teachers ears within weeks. Looking back, it was probably reducing inflammation. Treating yeast overgrowth also helped this issue, and if your child has been on antibiotics for 18 months, gut health is something you may want to look at... Her first time on Azithromycin at age 5 also gave us an 'opening up socially' and reduction in anxiety... Merry Christmas, welcome, this board is a wealth of help.

Testing for Lyme and co- infections would be a good idea. When that very same thing was suggested to me here on this board, I thought it sounded crazy- My sheltered daughter having Lyme disease? What? Dd had a sensory processing disorder dx at age 4 by an Occupational Therapist- 10 months of SPD therapy, which included me brushing her and joint compressions every 2 hours! Listening therapy, etc. Did not bring about recovery. Maybe it helped in some brain areas? I can not pinpoint, but there was no big victory flag. Later, I realized some of what I thought were sensory issues were really OCD- like the clothing issues, which I could write pages and pages about, and which are now thankfully gone.

Are you giving her another probiotic, a multi strain one, at least 2-3 hours away from the antibiotic? That would be advised....

Constipation can be yeast related, so just a reminder about giving good probiotics and very low sugar diet. It's important to keep the bowels moving- Natural Calm (magnesium citrate) is a good tasting powder to mix into a drink, tasteless aloe vera juice (George's) Oxy Powder capsules, all else fails, Miralax, but takes a couple of days to work- some thoughts---

Peglem, you are amazing. Truly. Golly, what we've been through. I don't have sage insight about the smooth transition/ improvement (although the thought he might be an infection carrier is intriguing) but with my dd, I am often caught off guard that on one hand she seems oblivious or nonchalant about others feelings, yet at the same time incredibly in tune with the undercurrent about what's going on (with me, as I am her main person.)

wow, your describing my 13 year old son. these last three years have been some dark years, with the last 10 months so scarry I am afraid to be alone with my son. the rages happen every three hours now, sometimes they are so long they just run into each other with continuous exhorcist rages attacking me with kill in his eyes, so out of control it scares him to death also. he has punched me in the head, kicked me in the chest beat me so hard I am covered in bruises, not to mention the beating himself so bad it is scarry. the episodes come on with him going OCD too, then he has a huge panic and tells me a rage is coming, he says his legs hurt, stomach nauseous and he turns beet red all over with overheating and freezing cold hands and feet, this is also described in a book I got called help for the violently aggressive child, where the author calls it beta and alpha rage, adrenergic crisis, adrenaline overreactivity. we are about to try some alpha blockers while we are waiting for our HD IVIG, would love to hear more about your experience with the IVIG and the rages and other symptoms and what dose you used.... I am scared to death this isn't going to help and then what... we have driven to emergency room so many times I lost count but I chickened out and drove home. ** hi- your response to my old post, of course, is tugging at me. Let me be clear, I do not have the PANS answers or cure knowledge. But let me also be clear on this: I am fearful for you. You CANNOT be the victim of violence. So whatever you have to do, physical violence MUST stop. IMO, if that means you get your son on a trial of Risperadone or Abilify, that is what you do- I am not sure of your previous bio- medical treatment history, or medication trials- of course, we all want to fix the root of the problem. However, if there is physical violence happening to you, you are bruised, attacked, afraid to be alone with someone that overpowers you, please, please get help. Sending you support in my thoughts----- S

3bmom, have you read the New York Times best selling book 'Grain Brain' by Dr. Perlmutter "A provocative, eye-opening scientific account of how diet profoundly influences nerve health and brain function. Grain Brain explains how the American diet rich in gluten and inflammatory foods is linked to neurological conditions. Dr. Perlmutter outlines a blueprint for optimal health and a more resilient brain through proper nutrition and lifestyle. Grain Brain is a must-read!"--Gerard E. Mullin, MD, Associate Professor of Medicine, The Johns Hopkins School of Medicine, and author of The Inside Tract: Your Good Gut Guide to Great Digestive Health Quite interesting! Along the same theory here- with Alzheimer's going the rate of 1 in 3 people by 2020, and 'ASD' currently 1 in 50...

The 'problem' with steroids is, if there is a current infection in the body, the steroid shuts down the immune system and can therefore allow that infection to flourish. How many children labeled ASD do you think have leaky guts/ gut dysbiosis, with an overgrowth of yeast and bad bacteria? A lot. A short steroid burst was NOT good for my dd. However, 1 of her IVIG's did give us great improvement- until it wore off.

My daughter never 'changed' from running a fever, and would have month long time periods of running low grade fevers (99-100 degrees, sometimes morning, sometimes afternoon) w/ no other illness type symptoms. I read Dr. Goldberg's book, and also had my dd w/ a biomedical Dr. trying to work on gut health/ immune system/ heavy metals from vaccinations before we realized PANS. Inflammation seems to be the core issue, IMO. Whether it's coming from bacterial infections, viral infections spiraling out of control, or damaged intestines/ leaky gut letting food proteins out into the blood stream to have antibodies go on the attack. As I am sure many can relate, I can ask 10 different Dr.s their opinion on my daughter and get 10 different answers.

** Is she gluten and dairy free 100% ? Has she tried this? Personally, I recently went 'Paleo' diet for my gut issues (no grains, no dairy, no legumes) it's meat, veggies, fruit, nuts (except peanuts) And I cannot believe how much better I feel, my mood has been lifted, sleeping better, and hungry (eating.) I was 100% gluten free, but it wasn't enough- I found myself just eating gluten free bread products, and not getting enough fat in my diet. I added teaspoons of coconut oil in my hot drinks too. With a history of eating disorders for your daughter, tho, not sure how food changes go over.

I think DH and I are too afraid to be left alone with all these kids, so we treat each other well. J/K. (sort of) Yes, this journey has been painful. Unforeseen, and frankly brutal at times. On my knees. This is my 2nd marriage (almost 10 years) and I chose a kind man. With every possible negative, there can be a positive. Yes, he let me spend the money. Now, kind of wish he didn't so much. See? We've learned together- when one of us 'loses' it, don't shame or judge, because it will probably be your turn next week. I tend to verbalize out- he takes it all inside. He had a trip to ER last Spring w/ heart attack symptoms- heart disease in his family. Stayed overnight. Scared us something good. We learned: It's not worth it. We HAVE to not let this stress take us down. Let go of controlling everything and outcomes. We are doing the best we can, and have done the best we could with what we had at the time. We love the kids dearly- but cannot 'fix' or predict everything. We have other children in the house, and their well being factor into our decision making. I learned: don't dump my worries and fears on the guy so much- he takes it inside. And, call me old fashioned, maybe another name, sex is important. Not saying all the time, but important to connect, seems very important to the men. We have favorite TV shows, rent a movie, after kids in bed. Our shows, our time. This doesn't mean I don't get depressed sometimes, or have feelings of grief come up around my dd and how much of a struggle it can be for me and her.

Ice packs right on your head can help- Also, holding ice packs in your hands can help (sounds crazy, but it's helped me.) For unbearable, ice packs on the head. Hang in there--

I'm an adult, getting older by the minute, but I started Bactrim DS about 10 days ago for the first time, and I'm okay. When I took Rifampin, it really messed with my hormones.

Philamom, just curious if you feel like sharing, what prompted you to retest for Bartonella? Was she symptomatic again? (I loathe Bartonella)

Oh wait, I don't know if you can have the enzymes before surgery, thinking not, sorry!