jennapow

LabMom and MasonsMom - I think you are both right to be looking at PANDAS for your children. I think we sometimes question ourselves when our symptoms don't match the textbook description, but you've both described symptoms that go along with others I've seen in my own children or heard about from other parents. I have one child who developed tics, started wetting himself, and developed episodes of anger and rage. My younger son has Asperger's so it was harder to tell. He had always had OCD and mood issues. But they got progressively worse and he started having urination problems, asking to sleep with his bedroom light on, asking me to sleep wit him him, and refusing to go to school. With him I didn't immediately suspect pandas or pans because his symptoms developed gradually and because they were mainly his ASD symptoms but stronger. We had him evaluated by a psychiatrist because the mood was so bad and we were considering psychiatric medications, which scared me to death. At about the same time I found the pandas symptoms and was able to get him in to see a specialist. Within 10 days of antibiotics his symptoms had improved significantly. I'm sharing this here just to show that our stories may all be a little different. The other thing I will add is that my greatest source of support has been parents who are also on this Pandas journey. Keep posting questions and seek out the support of other parents. I sincerely hope that you are on the right path to get some help for your children.

If you searched the forum you probably found a post from me from a year ago asking the exact same question. DS11 has very similar symptoms. Things started fall of 2015 with urinary frequency/difficulty. Tested for UTI and nothing. Then we got mood swings, school refusal, separation anxiety, couldn't sleep without the light on, wanted me to sleep with him. He deteriorated to 24/7 anger with any small request turning into a rage episode. At the same time he had a red rash on his bottom and severely dry/chapped hands. Things improved drastically after two weeks on Augmentin. The rashes even went away, so I assumed it was perianal strep. He's had abx again several times over the last year for mild flares in his symptoms, but has had a bigger flare in the last couple of months. He had 6 weeks of abx November - December and a steroid burst in December. Most PANDAS symptoms were down with the exception of school refusal and occasional urination difficulties. Now yesterday he went to the bathroom about 40 times, spending at least 10 minutes on every visit. The rash on his hands is severe. I haven't checked his bottom, but I'm betting it's red. His labs did not show any increased bacterial or viral issues so we haven't identified a trigger. We go to the doctor today for the urination issue. I'm afraid the abx and steroids have caused yeast to flare. I don't know what's causing the symptoms - pandas, yeast or both.

Would a regular strep swab at the doctors office reveal this? My DS improved tremendously after one round of Augmentin (suspected perianal strep but no confirmation- just anecdotal observation that anal rash improved after abx). His symptoms are starting to return 6 weeks post abx. He started another round of Augmentin a week ago. Symptoms are mild but still there. Moodiness, anger, urinary problems, trouble getting to sleep. His Bottom is starting to look a little red and he complained of it feeling "moist" after he went to the bathroom. My other son (also pandas/pans) has also been complaining that his bottom hurts.

How was your visit?

Has he not been tested before, or did he just not test positive before? We have never had a positive strep test. My DS finished a course of Augmentin 5 weeks ago and his symptoms resolved but many of them are starting to come back. I'm going to take him in to get checked. Our ped is pandas savvy so she will do a swab for us. Strange thing to say, but congratulations on your positive test!

Good luck with your appointment! For us he ordered ASO and dnaseB titers, anti-nuclear antibody, EBV and mycoplasma as well as total IGG and IGG subclasses. He gave us a prescription for Augmentin which we were able to start right away. He asked about symptoms and did a brief exam with my son. We had a follow up appointment 2 weeks after. Be warned that his interaction with kids is unusual. He always calls the boys "Mary Lou" and asks them if they like to play with Barbies. I think he does it to judge their reaction and social skills. I hope you get some answers!

Just throwing this out here to see if anyone has had perianal testing done for strep? My son just finished 14 days of Augmentin, and according to Dr. K, his positive response to the abx confirms a diagnosis of PANDAS. All of his strep titers were low, and tests for mycoplasma and EBV were negative. I am trying to cover every possible source of infection. I didn't even think of it until now, but my son (age 10) has had a bright red rash around his anus for a while. Occasionally there are also little pimple like spots near it or on his bottom. I suspected it was yeast, and I had been treating it with coconut oil and an antifungal essential oil blend. I just found this article and thought I would see if anyone has experience with this. Sounds like antibiotic treatment for this would need to last longer than 2 weeks. We just finished 2 weeks of Augmentin but I'm afraid it's not enough. Dr. K says 2 weeks should be long enough to wipe out whatever infection was there and we should wait and see if the improvements hold. If he relapses in the next 2-4 weeks he wants to do IVIG. Here is the article: http://neuro.psychiatryonline.org/doi/pdf/10.1176/appi.neuropsych.12050126 Just throwing this out there to see if anyone has experience with this.

Diet is definitely an issue. He has been restricting his food choices more and more and has extreme sensory issues to the smell of different foods - to the point that it is a struggle for me to cook any meals at home for the rest of our family. He gets a smoothie every day with probiotics, chia seeds, & coconut oil. Other than that he eats bacon and eggs, peanut butter and jelly sandwiches, hamburgers and hot dogs as his meal options. And of course he eats chips, fries and dessert. At home we use all additive free foods, uncured meats, etc. but we are guilty of eating out more often than we should. We were GFCF for over a year and didn't see a real benefit. But I think we need to make some changes. FWIW, I just looked up his daily progress reports from school. His explosive behavior started October 9. He Wes home from school on October 16, 19, and 23 complaining of a sore throat and his mouth hurting. We used Thieves essential oil at the time but did not see a doctor since he didn't develop a fever. Suspicious.

You have all been so helpful with answering my questions - I am so thankful to have a place to ask them! My DS (10) has the following symptoms: ASD diagnosis. Prior to October was starting to self limit foods, was also demonstrating increased sensitivity to smell. Behavioral regression beginning in October after nonspecific sore throat. Tonsils were puffy but no white spots, no fever. He complained on and off about the sore throat for a few days. At this point he started having more difficulty tolerating any type of adversity. Started refusing more things at school. Very explosive about things that were not done the "right" way. Also started needing the light on to go to sleep. Frequent gas and complaining of stomach pains. Has gained a lot of weight in the past year, much of it in his stomach area (distended belly). Started having urinary problems - going to the bathroom 4-5 times an hour. Having the feeling that he still needed to pee right after urinating. Sometimes pee will continue to spurt out for 10 minutes right after he goes. Behavior and mood got somewhat better in early November. Mid-December it became worse, and has continued to worsen. He becomes explosive whenever something doesn't go the way he wants. School refusal. Saw Dr. K a week ago Friday. Is on 10th day of Augmentin. We saw one night of perfect behavior (day 3 of abx), but other than that things continued to be bad. Separation anxiety at bedtime spiked on the first few days on abx and is now getting a little better. Urinary problems have also increased this week. I have been dosing ibuprofen 2-3 times a day since Thursday. There has been an improvement in his mood, with longer periods of calmness. He continues to have periodic outbursts when he is frustrated. Dr. K ran labs for strep titers, mycoplasma, EBV, and IGE, IGG, IGM etc. We will see him again this Friday for the results. I am wondering how to differentiate if Pandas is causing this flare or if it is yeast. He does seem to be doing better on the abx and ibuprofen, but I just read that ibuprofen can actually kill yeast! I am very concerned that if yeast is the underlying issue, then the abx are a very bad idea. I'm afraid that the doc might want to continue the antibiotic just to see if a longer period makes a difference. (Though From what his website says, Dr. K is not a fan of long term abx and sees IVIG as the way to cause remission). I guess I just need help,with what questions to ask the doctor to see how to tease this out. Any thoughts would be appreciated. I may be jumping the gun here without having the blood work results yet, but I want to be prepared for my appointment on Friday. Thanks in advance. Edited to add:one reason that I suspected PANDAs in the first place is that my older son has had several rapid onset flares with mood disturbances accompanied by physical and vocal tics, separation anxiety and bed wetting. We never did identity the source of his flares, but the symptoms were pretty classic PANDAs

Thank you all so much for taking the time to reply and share your experiences. I am so grateful for finding this board! This process has made me feel so alone and it's so nice to hear from people who have experienced something similar.

The school that they are suggesting we change to is about 25 miles away, so would be about a 45-minute bus ride. It is also a highly structured therapeutic school that only focuses on students with autism. OT and Speech are built into the classroom. They have sent our IEP over and we will probably visit next week. It just seems so extreme compared to what I was expecting for my son. Even at his best, he did require a lot of modifications at our home school and socially he has not made connections with any other kids. He is essentially tuned out to relationships with anyone other than trusted adults. With his behavior the last several months I am certain that the kids don't want to have anything to do with him - they're afraid he'll blow up. We are planning on visiting the new placement and seeing what we think. My fear is that it will be too "behavioral" for his current state of functioning (rewards/consequences for things he can't control right now) and this will only exacerbate his stress. I will also ask the doctor if homebound would be a consideration so we can keep that in mind. I do think that someone coming in to do homebound instruction would also be difficult for him, especially since he wouldn't know them and also is very rigid that you don't do school at home. There are so many factors to consider. Thanks for your input. It's helpful to "talk" through it.

This regression started in mid-October. Since that time his behavior and mood have gradually deteriorated and it is a struggle to get him to go to school at all. Last week I just kept him home all week (without a doctor's authorization), and this week he is going to school 2 hours per day. While he is there he is staying in the resource room and being given the choice of whether or not to attend events (art, music, PE, etc.) with his class. When he is "well" he still has autism, and attends our local elementary school with the help of an assistant. He is very high in math, science and reading, though he has challenges with socialization and critical thinking. Prior to this flare he was also attending an accelerated math class at the middle school receiving instruction 3 grades above his level. We also recently started working with a psychologist who specializes in autism. When I suggested homebound due to his anxiety/irritability she was not in favor of it. She thought it was just too long for him to be out of school. After observing him at school (in full-out refusal mode) she suggested that a change of placement would be appropriate. I was just wondering if a PANDAS doctor would write the note for home-bound. We are still working on ruling PANDAS/PANS in or out. He is on day 6 of an antibiotic and we meet with Dr. K again next week to review how he did on Augmentin and look at his blood work. I am praying to get some answers from this!

Just wanted to see if anyone's PANDAS doctor has prescribed a homebound placement during a flare. We have just started seeing Dr. K in Chicago. We are not even sure if it is PANDAS but something is going on where my son is not able to function. We have an IEP meeting today to change his school placement. I agree that he can no longer go to our neighborhood school, but I fear with how bad he is doing, that any school is going to be miserable for him right now. Wondering if homebound might be an option while we investigate and try to treat.

We have now completed 5 days of the antibiotic. DS has continued to show much more difficulty with being alone at night, and his urinary problems resurfaced last night (basically he goes to the bathroom urinates a normal amount, but then urine continues to spurt out for another 10 minutes or so). Behaviorally we have not seen much of a difference, other than Monday night. Monday he was cheerful, laughing, interacting with his brother, and not getting upset about things. Since then he is back to being irritable. He has not had a fever at all, but he did complain about a sore throat and a bit of a stuffy nose at bedtime last night. I am continuing to monitor and keep a journal. Right now he is going to school 2 hours per day and they are basically letting him choose to stay in the resource room and do his own thing, or attend class. He has not gone into the classroom all week, but at least he is going into the building. We have his IEP meeting this morning and we will be discussing alternate placement for him because his school participation has deteriorated so much over last quarter. I just can't believe how far he has gone down. I will try ibuprofen today to see if that makes a difference. Thanks.

Thank you so much for all of the resources. I am trying to read as much as I can. We used to see a DAN doctor, but it has been years since we have been in. I got overwhelmed with the whole process, especially with trying to get my kids to take so many supplements that they wouldn't take. We ended up just trying to work with diet and a few key supplements and we just stopped our follow up visits. Right now we are trying to manage this flare, which is so bad that school is ready to outplace my son. We also have an appointment with a psychiatrist for evaluation but I didn't want to start any other meds without looking into PANDAS first. We clearly need to do a lot more digging with his health. We had another night where he wouldn't go to sleep on his own and wanted the lights in his room to be on. Managed to get him into school for a 2 hour window today. Hope willingly got dressed and went with me. There were essentially no demands placed on him and it was still hard for him. He just thinks the world is all wrong. Got blood work done today, which is also a victory, though it was a miserable experience. Thank you again. It's helpful to see everyone's experiences.

I am new to this PANDAS/PANS journey. My son is 10 and has autism. In addition he has a history of behavioral regressions about once a year. His mood has plummeted since about mid-October. In addition he is showing some other PANS characteristics including increased urinary frequency, fear of going to sleep, etc. We were able to see Dr. K for an appointment on Friday. He prescribed a 14 day course of Augmentin and ordered lab work. DS has now had 3 doses of the antibiotic and it seems like he's getting worse! Last night it took him about 90 minutes to get to sleep. He kept saying he felt nervous and insisted that I stay with him. He woke up again at 3:30 screaming for me to come to his room and then asked that I stay in bed with him. Now he is pitching a huge fit about having to take a bath. He also doesn't want to be left alone in a room. Just wondering if anyone else has seen an increase in agitation, fears, etc, when first starting an antibiotic. Is there such thing as a die-off reaction with the antibiotic? I'm not sure I'm going to make it through 2 more weeks of this! His mood was so bad I kept him home from school all of last week. He's supposed to go back tomorrow but there's no way it's going to happen if he's still like this. Any insight would be appreciated. I of course have no idea if it really is PANS or his other autism issues. Jenna

Thank you for all of the replies! We decided we have to at least try this and see what happens. He seems to be getting past the flare, but we are still seeing behaviors. The pervasive negative mood seems to have past but we are still seeing rages, OCD behavior and work refusal at school. We just gave the first steroid dose this morning. Wish us luck! Do you have any suggestions on what to do if we do see a negative reaction? Would Epsom salt baths or charcoal be helpful at all? What about ibuprofen? Thanks again!

Hi there, I took my DS (9) to Dr. Kovacevic last week for a PANDAS consult. He prescribed the 5 day steroid burst with instructions to watch his behavior for 14 days after the steroid burst and email the results. After reading some of the other posts about negative reactions to the steroid burst I am scared to death to actually give it to him! Here's our history: reflux, colic as an infant, but generally normal development as a toddler. Precocious and very verbal at home. At age 3 1/2 had an infected preauricular cyst (developed cellulitis on a spot just in front of his ear). Required a double course of augmentin to clear it up. Started having behavioral issues at school. 4 months later - same deal. Infection and double course of abx. 1 month later (age 4) had surgery to remove the cyst. Cyst became infected again after surgery = more abx.. Pus was cultured and found to be strep. Other than that DS has never tested positive for strep. After this time he developed certain OCD behaviors - obsession with the color green, only washing his hand with certain soaps, etc, difficulty with transitions, sensitivity to noise... Transferred to special Ed preschool. Starting in first grade we noticed episodic tics - eye blinking, foot stomping, grunting. They would last for a couple of months and disappear. A year ago in the late summer the tics became SEVERE - constant noises, banging fists, jerking head. Also had emotional difficulties, frequent meltdowns, OCD behaviors, urinary incontinence. We were seeing a DAN doc at the time who ran a bunch of tests. Strep titers were low. Also tested for EBV, CMV, toxoplasmosis - all negative. hHV-6 titers were high. We treated with 5 months of valtrex. The tics gradually subsided, but who knows why. Was it the valtrex or just the normal waning of symptoms? Fast forward to this year - both kids got a viral infection the last week of September. Fever, sore throat, croup. Again no strep. But DS tanks. Mood is horrible - everything makes him upset and anxious. Can't go to sleep on his own. OCD kicks in (this time obsessive need to smell everything). Verbal tics return. Explosive rages - hitting, kicking. Can't/won't get work done at school. I was hoping someone could give me more information about the steroid burst. The way Dr K explained it, it is a test to see if there is an autoimmune component to what is going on with him. Basically he said if we see noticeable/unmistakeable change post burst, it is 90% likely he has PANDAS, and we would go from there as far as treetment. We gave him all our lab results from last year and he said he didn't need to run any other tests right now. I had the prescription for the steroid filled but I am reluctant to give it. I don't want to give it to him before school without knowing how it will affect him. I am afraid of a negative reaction. Let's say I give it and he does have a bad reaction. Anything I can do to calm him down? Should I keep giving the rest of the doses (5 days total)? Thank you in advance for your wisdom! Jenna