Satara

Thanks, I came to the PANDAS site because he had 14 out of 16 of the symptoms I read and his sudden onset. There are so many possibilities. My one fear is that if it is PANDAS we will miss the window to give him the abx (we probably already have because he has been symptomatic for almost a year). I will ask about a natural abx. Are you thinking of goldenseal? I've been on it a few times and it can taste pretty nasty. Same with oil of oregano. Cynthia

Hello everyone, I don't know what to think/do. I don't know if what he has is PANDAs or systemic candida (which he tested positive for and can cause neurological symptoms) or what the heck is going on. We have a fantastic naturopath who has him on supplements/a chelating agent (he tested positive for lead and arsenic), nystatin for candida, omegas, a natural anti-inflammatory etc. We have definitely seen improvement. He no longer has psychotic episodes where he thinks everyone is out to get him and the mood swings are getting better. He does have rages but they are much shorter lived and not nearly as extreme (we can always track them back to food (too high blood sugar/emotional triggers). He is doing well in school. It's funny because it's hard to know what is 'normal' moodiness/bickering between brothers because we are on hyper alert any time Liam starts to get agitated. We went to his cousin's birthday party yesterday and his cousin was way more moody/sullen and crabby. It makes us think we need to stop hyper focusing on Liam. I don't know whether to push for antibiotics because they would be great if it is PANDAS but we know he does have a yeast problem so it would make that worse. All the things that trigger his rages feed yeast which makes me suspicious that that could be the problem but I'm not sure what to do. What has your experience been with dealing with PANDA(ish) behavior? Cynthia

It seems like it can be a combination of a ton of things that cause these symptoms. So far Liam has systemic yeast, low iron levels, low lithium levels, wheat allergy, casein reaction, hypoglycemia... we are awaiting other tests. Cynthia

I know you just get saturated with possibilities. There are sooo many things it could/might be. We have noticed a difference in his mood since he's been on the nystatin. His symptoms have steadily declined since we changed his diet (which we call the air diet because he's off gluten/casein/yeast/and on blood sugar stabilizing diet so what's left?). Cynthia

Ours was ordered to rule out temporal lobe seizures because of the sudden onset and the fact that we can trigger his reactions/rages. I don't know how we are going to get him out of the hospital because after his sleep test we are going to trigger a reaction/rage (we are going to give him some milk chocolate sugar and casein set off an immediate reaction). We are hoping to find out whether it is a seizure disorder or whether it is to do with his systemic yeast. Cynthia

I have (as usual) been doing a lot of research and found a site that listed lesser known symptoms of severe candida infection. Although Liam has not been on many antibiotics and does not eat a lot of sugar (well none anymore) he has a serious candida infection. He has started on Nystatin and the mood swings are starting to disappear it is so exciting! Liam has 24 of the following symptoms. I can't believe my regular doctor wouldn't even consider the possibility that it might be a problem for him. Our naturopath did a urine test and was shocked at how high it is. Apparently some people are susceptible to it. I have dealt with it all my life. It is worth looking into especially because a lot of PANDAS kids are on antibiotics. Here they are: Symptoms of systemic Candida: Symptoms of systemic Candida: * GI Tract problems, such as Irritable Bowel Syndrome, Constipation, Diarrhea * Extreme Tightness in the Shoulders and Neck[/b] * Bronchitis/Build up of mucous, feels like a bad cold/allergy that won't go away * Flu-like symptoms Pain in the Joints and Muscles * Hyperacidity, Acid-Reflux * Blisters in the mouth, tongue, throat * Unrefreshing Sleep * Back Pain, Discomfort, Problems * Thyroid Disease * Adrenal Failure * Irritable Bladder Syndrome * Localized Yeast Issues: Oral Thrush, Vaginal Yeast Infection * Prostrate Problems * Fibromyalgia * Skin Sensitivity in the Sun: Skin Swelling * Bloated Stomach/Abdomen * Fatigue, an Incapacitating Fatigue, Chronic Fatigue Syndrome * Sensitivity to Chemicals * Weight gain (Over time you may start to look like the Pillsbury Dough Boy) * Cravings for Sugar, Carbs, and possibly Alcohol * Inflammation/Swelling * Whitish-like Coating on Tongue * Aversion to being Touched or Jumping * Crawling Skin * Menstrual problems including PMS and Endometriosis * Recurrent Yeast infections * Recurrent Ear infections * Rashes and Dry, Flaking skin * Eczema * Dermatitis * Acne * Skin Discoloration and/or Blotchiness * Allergies and Sensitivities to noise/sound, foods, odors, chemicals * Chronic Fatigue Syndrome (CFS) * CFIDS (Chronic Fatigue and Immune Dysfunction) * Fibromyalgia syndrome (FMS) * Lupus * Hypothyroidism * Leaky Gut Syndrome * Crohn's Disease * Irritable Bowel Syndrome * Celiac Disease * Chronic Sinusitis * Atopic Eczema * Alcoholism * Autism * Seborrheic Dermatitis * Tinea Versicolor * GI Dysbiosis * Adrenal Dysfunction * Rosacea * Psoriasis * Macular Degeneration * Barrett's Esophagus * Lactose Intolerance * Gluten and/or Casein Intolerance * Meniere's Disease * Obsessive Compulsive Disorder (OCD) * Irritability * Depression * Anxiety * Panic Attacks * Recurring Obsessive Thoughts * Personality Changes and Mood Swings (irrational rage or crying for no reason - fear of talking to people, any kind of confrontation, isolation) * BiPolar Disorder (Candida is a bi-polar look alike) * Paranoia * Short-term Memory Loss * Problems with Concentration * Brain Fogginess * Shortness of Breath * Dizziness and Balance Problems * Sensitivity to Heat and/or Cold * Alcohol Intolerance * Gluten and/or Casein intolerance * Irregular Heartbeat * Painful Gas and Abdominal Bloating * Low-grade Fever or Low Body Temperature * Numbness, Tingling and/or Burning Sensations in the Face or Extremities * Dryness of the Mouth and Eyes * Difficulty Swallowing * Projectile Vomiting * Anemia * Weight changes without changes in diet * Light-headedness * Fainting * Muscle Twitching and Muscle weakness * Restless Leg Syndrome * Low Sex Drive and/or Numbness in the Genital area * Chronic Sinus Problems and Headaches including Migraines * Chronic Dental Problems * Visual disturbances may include blurring, sensitivity to light and eye pain. * Chills and Night Sweats * Dandruff * Jock and Rectal itching * Chronic Athlete's foot * Chronic Toenail and Fingernail fungus * Ringing in the Ears Cynthia

Hello everyone, You have all been so helpful. We just got in on a cancellation to get an EEG next week. Our issue is that he has to stay up until midnight get up at five a.m. and his appt isn't until one p.m. He is a nightmare if he doesn't get enough sleep. My hubby is off that day (thank God) so I will have assistance keeping him awake in the car. The other thing we are going to do is after the sleep part of the test we are going to feed him sugar because this triggers a really extreme reaction. He's been off it for months. It will give us some results from the the test but I have no idea what to do afterwards. He is pretty much psychotic when he eats sugar. He was tested for candida and has a systemic candida infection (which is what we figure causes this reaction). I have no idea how we are going to get him out of there after the test. YIKES! What happened to my 'normal' life? I never thought I would be dealing with crazy stuff like this! thanks Cynthia

Kiera that is good to know. My hubby has some joint problems so I'm going to see if I can get him to give it a try too.

Thanks everyone I am going to pick some up today. I will introduce it slowly along with everything else.

We use Nordic Naturals (it smells like strawberries). He has never complained about taking it. Cynthia

Thanks for the information. My brain is spinning from all the different things he is on and the new diet. I don't know how I am going to get it all in. Cynthia

Hello everyone, We had such a great outcome with our ibuprofen trial we are looking for a long term anti-inflammatory that won't have adverse affects on his stomach and liver. Has anyone tried circumin? Our naturopathic doctor recommended it. What dosage have you used? Thanks Cynthia

Airial, He is on an omega supplement. We have a company here that exclusively makes flax products. We used to get their stuff all the time I will look into the ingredients thanks for reminding me. That's funny about him sneaking healthy cookies. My sons' are horrified when they catch me adding stuff to their food. I puree veggies and put them into sauces my older son busted me pouring pureed spinach into the spaghetti sauce he insisted that he could taste it, little did he know that he had been eating it like that for years. Have a great day! Cynthia

We have an appt to get the results of Liam's allergy/heavy metal/vitamin deficiency tests on Monday so I think that will help as well. On Wed we will hopefully get the results of his titers/celiac tests. We have considered doing GAPS but Liam hates soup/anything mushy (like veggies in soup) so it would be hard. We will know Monday whether we should do GF/CF we already have him off of gluten because we notice that he has mood swings every time he eats it. I am hoping the doctor will listen to me about the anti-inflammatories. It gets very tiring having people look at me like I'm crazy but hey it's all worth it if we can find out what's up with Liam. Have a great day! Cynthia

You have gotten some great tips on here. You are incredibly lucky to have a doctor who is willing to look into it and try things we are still fighting for that months later. I have two boys one who has Tourettes and one who has some unknown disorder possibly PANDAS. It is incredibly hard for us to see our children struggle in any way we want to fix it. I have run myself ragged with tests/assessments/advocating for him. It's tough on parent/families and siblings. My best advice (that I am still working on) is pace yourself, breathe and set aside time each day to just be with your family. Have fun with your kids it's hard but they need things to be 'normal'. I tend to cry in my car because it seems to be the only quiet place where I'm alone. I feel better once I've let it out and feel like I can keep going. Assemble a team of people you trust. We have a GP/psychiatrist/occupational therapist/naturopathic doctor who specializes in kids with neurological disorders/family and friends who we know love us no matter what. I wish you and your family the best of luck. The people on this site are amazing, they have been a huge help to us. Cynthia