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

Hello everyone, We tried ibuprofen 400 mg (the prescribed dose for his weight) for two days. I didn't tell him what it was I just put it in with his supplements. Within a few hours the cycles stopped (he goes up and down throughout the day), the extreme frustration/anger/rage was gone. He was his old self for two days it was incredible. My older son asked, "what's up with Liam?" I braced myself thinking he'd done something and he said "he's so calm we played for two hours with no reactions, it was great!" When I asked Liam how he felt on the second day he said "better than I can ever remember feeling." I know this isn't a definitive test but to me it points towards an inflammatory reaction to something ie PANDAS/celiac etc. We are waiting to get his results from his titers/celiac/allergy tests. It sucks that ibuprofen is tough on the liver because I would love to keep Liam on it. I'm going to look into an anti-inflammatory diet and see what we can do. Has any else had success with this? Did the doctor think anything of it? Cynthia

Thanks Nancy you really know your stuff! I am so thankful that the OT will be there to go over things because I felt lost trying to decide what to ask for. Most of the time I feel like I have to be the specialist in all aspects of this. It's hard to know what to ask for when he changes hour to hour.

Thanks everyone. Peglem: Thank God for mommy and daddy warriors who are willing to fight for their kids. I can't imagine how many kids have been institutionalized over something that is fixable. Kath: Thanks. That is really interesting about iron. I never knew that. Nancy: It sure is a roller coaster. Highs, lows and queasiness not the easiest way to live! I pray that we all find solutions and can heal our kids. Have a fantastic night! Cynthia

Holy cow after months of beating my head against the wall and feeling beaten up and bruised by the system I finally feel like I'm getting somewhere! Today we (finally) got an appointment to see a psychiatrist in our community it's in October but originally it wasn't supposed to be for 8 months (nagging and pushing sometimes does get you somewhere ; ). My GP actually listened to me and did a barrage of tests. She has a PANDAS patient in her care and has co-treated with a specialist. She is doubtful about this diagnosis for Liam because she says PANDAS comes on remits and comes on when reinfected whereas Liam's symptoms are up and down daily. I explained that he had a bug a couple of weeks ago and it was a horror show he was on lockdown in our house and some days he does great. Plus on here it seems there is a variety of symptomology. I have a meeting with our principal/vice principal/resource room teacher/teacher/one person who I'm not sure what their position is and it looks like our OT is available to meet with all of them!!!!!!!!!!!!! I thought I would be there by myself (my hubby is working) and had no clue what to ask for (other than what I've already asked for). Our naturopath called and all the test results are in we are seeing her Monday so we will know about allergies/deficiencies/supplements/heavy metals etc. I got copies of all my son's test results for the last year and noticed that his iron levels are REALLY low from tests done in June I'm not sure why no one in the office noticed this but apparently they weren't paying attention. This would go a long way to explaining his lack of energy and some moodiness. The last two days I have given Liam ibuprofen and holy cow what a difference. He has had NO episodes or mood swings today and says he feels better than he's felt in forever. I know this isn't a treatment but I wanted to try just to see if it is an inflammatory reaction. Not bad at all considering I was crying with despair in my car this morning feeling like nothing was ever going to happen. It's weird that it all happened on one day. Thanks for listening. Cynthia

Hello again, Basically I have developed a technique honed over many years where I go into my dr and say these are the tests I want/medication I want to try and present a very persuasive case and she generally will agree to it. I have a long history of curing myself of things (I was told in my twenties that I had three days to live and well I'm still here and was also told I couldn't have kids and I have two so I don't tend to listen to people who say I can't do things especially doctors) so I think although she thinks I'm a bit strange I do get results. I was surprised as well that he would have yeast. He is on 1000 mg of fish oil a day and EMpower by Truehope which is a multivitamin that they use to treat bipolar disorder but has also seen some effect with Tourettes. It seems to stabilize his moods and we are using it until we see our naturopath (in a couple weeks) she will put him on a more specialized program. He got allergy/heavy metal/yeast and gluten/casein sensitivity testing. There is a test for systemic yeast but I think you have to get it through a naturopath or order it online through Great Plains Labs. I hope that helps Cynthia

Well we got through the first day of school without any incidents. I gave the teacher the report from the private OT and had a chat with her after school. She seems great! A couple hours after I got home she called and asked if I could come to an appt. after school on Thursday with the outgoing principal/the new principal/a teacher from the resource room/our teacher and one other person who I'm not sure of. HOLY COW! I'm not sure whether to be excited that things are happening or to be scared stiff that so many people are involved. My biggest fear is that they will say he has too many problems and needs to be at home (this happened to a friend of mine). My hubby is working so I will have to go face this panel by myself. Man this whole thing is overwhelming. On tomorrow's agenda I am seeing the GP to get requisitions for strep/mycoplasm titers among other tests and to point out all the inaccuracies (they even got his hair color wrong) in the report from the psychiatrist. Any advice from someone who has been through this? If you had told me a year ago that I would be doing all this I would have said you were nuts! How can a kid who was perfectly 'normal' this time last year have so many problems this year?

Hello everyone, I had been noticing over the summer that our 11 year old son's tics were increasing/adding new ones. When I thought about it the main change over the summer is that he has been eating more sugar (sleepovers/camping etc). On a hunch I got his GP to prescribe nystatin. Well two weeks later the throat clearing tic that he's had since he was five is gone (possibly temporarily) but last night for the first time we read together without him clearing his throat constantly. The other tics have noticeably improved. We are going to endeavor to cut down on sugar and other yeast causing foods so that when he comes off the nystatin he won't have a huge relapse. The weird thing is that he's always been on probiotics and we have limited his sugar he hasn't taken a lot of antibiotics so it's odd that he would have yeast.

Hello, I am exploring all this as well. My older son's tics had been getting worse this summer with some new ones emerging. He's had a throat clearing tic since he was five (it took years to figure out that it wasn't a cold/allergy) but now he had a neck twist and a hand tic. The main thing that's changed for him over the summer is his sugar intake so I thought it might have something to do with yeast (sugar seemed to bring them on). I managed to convince the dr to put him on nystatin for a month and tadaa we are two weeks in and his tics have noticeably improved/the more recent ones have disappeared. Last night for the first time in years when we read together he didn't clear his throat once. He usually does it constantly. Now I'm not saying this is a permanent improvement but it does give me hope. Good luck on your search. Cynthia

Hello Nancy, We are in Canada. Thanks for the information. The assessment he had was through the Children's hospital not his educational assessment. I'm not too hopeful about him getting his educational assessment any time soon (although it was recommended by the psychiatrist at Children's and the principal is actively pursuing it). There is often a waiting list of 8 months. I am taking my 'marked up' version of Liam's report to the GP and the mental health team we have been referred to to try to clear up the mistakes. We are awaiting the results of his allergy and gluten/casein tests hopefully they will come in in the next couple of weeks. I know what mean about burning out I did it a while ago and had to take some time off of all of this but due to the complete lack of support from the "medical team" I feel like I'm the only one fighting for him and as time goes on I am seeing less and less of him and more of whatever is taking over his brain. It's horrifying to see him slipping away. I feel like if I don't get on this I may lose him permanently and I couldn't live with that if there was something I could have done. I am making sure I go out with friends and do things with my sons' and my hubby but this all needs to be addressed as well. Our other son had onset of something at the same time but his is presenting more like Tourettes with mild mood swings not nearly as horrifying as Liam's symptoms but I feel like there has to be a link. Why else would they have onset at the same time. They are three years apart in age and they had strep/pneumonia last winter and our dog had tics after camping last summer so there are a lot of avenues to explore.

This is all soooo bizarre up until Christmas last year he was perfectly fine and now he's a mess of weird symptoms. I feel like I'm beating my head against a wall with our medical system I keep getting referred from dr to dr with no actual help. The only thing they have suggested is putting him in an inpatient facility for observation for a month. How we can go from a brief assessment to basically committing him is beyond me. The weird thing is that he is the most charming engaging sweet wonderful kid half of the time and he can read social cues then he gets into some weird cycle where he goes into manic mission mode where he fixates on topics and endlessly goes after what he wants with us saying no a hundred different ways. I hope I can get somewhere with the doctors this week. This forum has been such an amazing help and has prevented me from thinking I am going crazy. I read the report from Liam's assessment and the dr got tons of facts wrong including his hair color/symptoms/my husbands family history. What the heck? How can a psychiatrist make so many mistakes on a five page report. It just shows he wasn't really paying attention. Thank God we have an amazing pit bull of a principal who is going to bat for Liam. She is retiring after Christmas so we are trying to get everything in place before then. We are trying to set up some kind on counseling through the school but because our school is small we don't have a lot of hours allotted. Do you find food triggers behaviours? What is your treatment plan like? What successes have you seen? Sorry if this is kind of nosey but I need to grasp on to some hope that we will have our son back at some point.