GatsMom
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I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!
Wow! I'd call that a turning point! Good for you and your family! Wishing you all the luck, strength and faith needed and hoping this leads to giant step on your kiddos path to recovery. Safe travels to you.
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My son will still worsen for the first 3-5 days on abs.Then it seems like he will plateau or start to improve. This is an ongoing process that has lasted anywhere from 6 weeks to 5 months depending on which exacerbation I refer to. Along the way, he had improvement, setbacks, and more plateaus. For some reason it seemed like if he was experiencing abump in the road, it would last for a couple days then he would be better than what he was prior to the bump. That happened more than once so I saw it as a pattern for him. I followed a lot on instinct. If I saw all behaviors that had been ridden resurface, I just knew strep was back. If I saw some setbacks, I'd give him a few days and see if it was soemthing to be really concerned about.
Stress during the recovery period would definitely make things worse. I kept family get togethes to a minimum and I would be very aware of how he was acting in public. if I saw him getting more fussy or irritable, we'd stop errands and go home. With school, he actually did well most days. When I say well, I mean for the most part he got to school. Took a long time getting ready but went. He didn't necessarily interact or was himself, but he didn't have meltdowns. After school, I knew to just leave him be for about an hour and let him deprogram himself otherwise he'd go into overload.
I do think it is very beneficial to jot down how days go. This helped me see patterns in his recovery and kept me from many of my own panic attacks. I know Buster has shared his rating system as well. If you see a rise then make sure to note what was going on at that time, including taking a hard look if he may have a virus, allergies, etc at that time.Hopefully, you will earn you own child's patterns too.
Thanks Vickie,
I have adopted Buster's rating system though I still have a running journal by day that denote meds/meals/times/meltdowns. Kind of a day at a glance. He's out of school presently, there is no possible way that could happen. He pushed himself to go for weeks and everyday would end in failure (and he was keeping count of those failures which wasn't helping). Now we're home, he sleeps 12 hours at a time (very out of character) and progresses through days that are very stress contained. Once or twice a day, with little or no warning, there will be an episode of anxiety that normally spins to panic but sometimes he can contain to nervousness. The simplest things, like errands have to be done in the span of about an hour (if that). My musclebound 16 yr old boy is as fragile, in every sense of the word, as can be.
Thank you for your great insights, Vickie!
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Hi Gat's Mom- I am sorry you are going through this, again. Just wanted to offer you some hope. It took my dd 30 days on zithromax before we really saw improvement. It then took another month of sawtoothed progress. At that point, she was at about 90%. Unfortunately, it does take time. I really think you need to be prepared to give it 30-60 days before making any judgements. It is SO hard to be patient, I know. If you don't see a big improvement, will you consider a steroid burst?
I would absolutely consider a steroid burst because he responds well to Advil all provided his lyme tests come back negative. We just had a bundle of labs done a few days ago. I would sever a limb to get to 90% improvement right now. Thanks so much for the support, I can't tell you how much easier it makes the "wait and see" period. Everytime I read that a child improves on abx I feel relief in my own gut. This kid has recovered himself through the last two exacerbations, I just can't help but think that with some pharmacological intervention, he could be a recovery success story.
Thanks again, dcmom, so much!
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ds16 is on day 6 of augmentin 2000mg XR and azith 750mg. He's tolerating the abx along with other supps and probiotics well. The first two days I saw some improvement and lessening in severity of symptoms but I've seen no more improvement since then. In my desperate quest to maintain some hope, are my expectations for a big turn around in just a few days unrealistic. This is our 3rd major exacerbation in 7 years but the first one that's being treated correctly. Subsequent episodes took about a year to resolve on their own. His separation anxiety is at an all time high and now he doesn't even shut the door when in the bathroom (180 degrees his normal). I have't left the house in days, haven't worked in 1.5 wks. Like all of us, I spend every spare moment praying for a miracle for him (and I) but in doing so am I simply overlooking the fact that he's been sick for many weeks and unwinding takes time?
Sorry for the needy plea but I really need some legitimate, realistic expectations to pin my most intelligent hopes to while I continue to pray for a miracle for us all.
Many thanks,
Gat's mom
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Hello to all. I have been reading this forum for four weeks. First, I am so thankful to have found this forum and the PANDAS Network. I really believe there are outside forces at work; me finding this site. You see, my ds9 most likely has had PANDAS since the age of 3 or 4. One day, about a month ago, I was cleaning out my favorites on my internet at work. I came across a site I had saved when my son was 4- a site on PANDAS. I must have bookmarked it since it was such a good site for PANDAS info. I'm sure I had not seen the site in the last 5 years. Turns out, it was Dr. K's site. I scrolled down to see this picture- you know the one- of the dolls the little girl drew before and after IVIG. I was FASCINATED. This school year, my ds has had trouble with drawing and writing issues more so than normal, and mostly when sick. At one point, he brought a paper home from school, and I could not even read the handwriting. The pictures above it I swear were SCRIBBLES only. But when he was better, the writing returned to normal. I have spent this entire school year so far trying to figure out why my mostly straight A son has been failing the state standardized tests. We had a full speech evaluation and appointments with pediatricians and developmental pediatricians. No one can find anything wrong. But that is not the whole story. This is our experience, but it is long. But I think the more info that is out there, the better.
My dh and I have spent the last 5 years assuming our son does not have "PANDAS" but rather classic OCD and Tourette's with "PANDAS LIKE" exacerbations. He does well, but definitely has symptoms when sick or with strep. Where to start? Let's see...
Age three, lining up letter puzzles nonstop. He'd make us buy more puzzles to make more words, and we would do it. Hand flapping. Food aversions. Severe separation anxiety. Took him to preschool the first time and he threw up he was so upset and did not drink anything the whole day. Went to pick him up and he was standing by the fence waiting for me, crying, while the other kids played.
Age four, hand flapping, but also now has head shaking back and forth and this marching hop thing. I mean, what the heck? But this is transient. So when I tell the doc, she has no answer. Still severe separation problems. A few months later starts the eye blink. I took him to the eye doctor as any good Mommy would do, and his eyes are normal. Then the real stuff starts a few months after that. March, 2005. I can remember this like yesterday. My ds starts spitting. Not just a little. Spitting all the time and saliva everywhere. He does this spitting thing for about four days. Then, in a 2 day period, he lost it. The spitting was joined by huge unusual body movements: arms up and down and around. Marching with head moving back and forth and arms moving at the same time AND humming and unusual noises. In addition, he could not eat. He was so hungry but could not eat. He would only try to eat an english muffin but we had to make it a certain way and we had to let him oversee. He would sit there, all of four years old, and pick up his plate and lower it multiple times with these unusual vocal noises. He would put the plate down and then do an arm rake thing over the food. Most times he still could not eat it and even if, only a mouse bite. Plus, he was seeing flies and was upset there were flies on the muffin. He would see flies while riding in the car. We hid his board book "I know an old lady who swallowed a fly" which I'm sure is where that came from. At one point his body is moving in all directions and he looked at me and cried " I just want to eat my food!" He was so hungry but could not eat. I still get upset thinking about it, as he could not eat for almost 2 weeks and were close to taking him for hospitalization. At this time, he is also doing a robot walk thing and doing this staring thing- like he was not "in there". He would be gone for up to an hour at a time, then come back. SO scary. We were very aftraid one of those times he would not come back. Of course, this was so distressing as it exploded over 2 days, we were sent to the ER. They just watched him. And, decided it was OCD so see psychiatry. You know what? In hindsight, thanks for nothing. That led us to no where a la Saving Sammy as of course, it was an 8 month wait to see a psychiatrist. We were then also told to see a neurologist. It was there, with him that we first heard the word PANDAS. This neurologist ordered a CT scan of the head and an EEG to rule out seizures. He ordered an ASO titer. I remember taking our ds for these tests, and in addition to his other symptoms he developed this horrible leg/hip/knee pain; but no swelling. He had to be carried to the bathroom, as it was so bad he could not walk. I remember asking the doctors about this pain, but to be honest, the other symptoms were so distressing at the time I think it got shoved under the rug by us and the doctors. This severity of symptoms lasted about two weeks, and at our follow up appointment with the neurologist, we were told this was not PANDAS as the ASO titer was normal. It took both my dh and myself 3 weeks off work to care for him. He very very gradually improved. About 6 weeks after this happened he could go back to preschool, but he was still spitting. They let him spit in a trash can but still come. I took about 3 months for these symptoms to fade. Since the ASO titer was normal, my dh and I assumed this was OCD and Tourette's and dealt with it, and have ever since.
Over the years since that horrible time, our ds has done very well. He does well in school. He has friends. He goes to birthday parties. But the symptoms still come back; but not in a debilitating way. I have watched this over these 5 years and can say with confidence that he will begin with tics one day, the next day get a mild sore throat and fever, and the following day have a high fever and be positive for strep. He will get Omnicef for the strep as he is allergic to amoxil and our ped doesn't like zithromax. And he will gradually get better. My dh and I joke that his tic increase is a better indicator of strep than the rapid test in the office, and we had a few negatives of those when testing "too early".
When our ds was 6, he had his tonsils and adenoids out after having strep throat nine times in a row. That was not fun- it would not go away. After the surgery he would still get strep, just not as often. My younger son has had some bouts of strep, to be expected. I have had strep throat several times over the last 4 years. My husband had his tonsils out so doesn't get it as often. Two years ago, I was sick for several days with what I thought was a virus. Then, the first day my fever was gone I had a rash from the neck down. One of my coworkers swears I had scarlet fever, as she had seen it before. I couldn't get in to the doctor until after the weekend and by this time both my knees were swollen. At my appointment I was given prednisone and told it was most likely viral. But about 4 days after that, my ds had tics and of course a few days later positive for strep. My doctor then checked my ASO titer and it was elevated. He gave me amoxil. What a joke!
Looking back now, I can put the pieces together. My ds mirrors many kids on this forum: frequent strep, strep in the family. Allergies. Sick all the time with all kind of crap that isn't even going around at school. Asthma. You name it, we have it. Plus all the other family stuff you all mention. It really is truly amazing to me, all of my ds's little quirks and nuances are listed here. So for now, I plan to join this forum, continue to research as much as I can, and see Dr. K (he is closest) as soon as we are able. If Dr. K says he has PANDAS, I will not be surprised. If Dr. K says he does not have PANDAS, I will not be surprised.
And, by the way, if anyone is still reading this ridiculously long post (I should be in bed), it took me awhile to choose my "name" for this forum. I chose "reactive" because I was diagnosed many years ago by a rheumatologist with "reactive arthritis". This autoimmune disease causes arthritis and swelling in multiple joints. When I first got it I couldn't walk for a month. It comes and goes. It is considered "reactive" because your body is "reacting" to something; like Lyme disease, or other infections or to some thing else that is unknown (as is my case, cause unknown)...I am starting to think maybe strep?
Your history is a recurring theme but you've found a great group and there is strength is numbers. Hanging around (virtually) with seasoned, bright parents and aligning with one of the big gun docs is the best thing you can do for your son...and I'll bet you end up tackling that reactive arthritis once and for all in the same step.
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So, I find out that a kid in my non PANDAS son's class has strep. I bring my son to the ped for a strep test to make sure he didn't contract it. He's non-symptomatic with strep. The rapid came back negative, they will run a culture.
He also has had a cough for about a week and figured it was allergies and sinus drainage causing the cough. Instead, the ped said he has mycroplasma! He is contagious right now. He shares a bedrom with my PANDAS son. Obviously, the will not share a room tonight.
Are my other 2 kids in the clear as long as they don't have a cough? My PANDAS son has a sinus infection but no cough. I know the Augmentin wouldn't protect him from Mycroplasma. I am freaking out. The ped said not to bring the other 2 in unless they develop a cough.My non PANDAS son recieved 5 days of Zithromax.
Side note, a bunch of kids in my PANDAS son class has a cough. I now have a headache.
Good thing, non PANDAS son not showing any PANDAS symptoms. Will contnue to watch with an eagle's eye.
Is Azith the best treatment for mycoplasma? Given the way your PANDAS son could react to mycoplasma, won't your ped see fit to treat him with a prophylactic abx?
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Does anyone know if NC has pockets of strep resistent to Zith?
Also, in regards to the Inositol, LLM or mom2pandas did a post describing how you work up to the desired dose. But not sure on what you start with and what you ideally should end up with. may be worth looking up.
Hang in there and know that answers are making their way to you. I'm from E. TN and have spent the past 4 years of my life trying to explain PANDAS to the local medical community. Now we're working with Dr. T. There is a night and day difference when you are aligned with a physician who truly understands the underlying mechanisms that are at play in our kids. I cannot recommend highly enough seeking help from one of the experts. Find the success stories, print them and read them multiple times each day until the belief that recovery happens is firm in you.
Vickie: I'm looking for the inositol schedule we used for my son during the last exacerbation. At the time, it didn't make a noticeable dent in anything for him BUT we were not treating with abx at that time. I absolutely would not rule it out as a valuable adjunct in combination with any other therapy.
Gat's mom
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I'll try to keep this brief. Our son, 13, has been fighting PANDAS for almost 3 years. Originally diagnosed with acute rheumatic fever / Sydenham's chorea, then changed to PANDAS. Three major exacerbations, each worse than the previous ones. Three rounds of IVIG that helped but only temporarily.
We started the "Saving Sammy" dose of augmentin XR about 4 months ago. Before that, our son's Y-BOCS score was 35 (Extreme). Today he was retested... and his score has dropped to 9 (Mild), almost subclinical!!!
Five months ago, we were hanging on by our fingernails, wondering how much longer we could cope. Now, we can see our son coming back to us a little more each week. There is hope for all of our children!
We're on day 4 of the Saving Sammy dose. I couldn't ask to have read anything better than your post! Congratulations to you and your family and thanks for updating, and thereby encouraging, the group!
Gat's mom.
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ds16 has had 2 full days of Augmentin 1000 mg XR twice daily (he's also on day 12 of azith). He's still having a couple episodes of anxiety when one of his triggers is present but it has not spun into a full panic attack. This is unusual for him. Typically once the wheels get set into motion, he's unable to wrestle the anxiety down until we go through the full spectrum including the panic attack. There appears to be a lessening in the severity of the anxiety. I'm hopeful that this is indicative of augmentin doing its job. Can an abx switch (to augmentin) produce a result that quickly in a child who was 5 wks into an exacerbation before starting treatment?
Many thanks,
Gat's mom.
Perhaps sawtoothed will be our word for today. After another good morning, took him for bloodwork which over the years has never been an issue for him but recently has become one. No go! It was horrible but I suspect it was because he was so far from his comfort zone and with the last 2 days of healing notwithstanding, he's been a very sick kid for a couple weeks. After a failed attempt at getting him in the chair, he was furious at himself & life (again). However, once we got back home he recovered quicker than I've ever seen from a panic to that degree. It was a really horrific afternoon BUT there is clearly a change in how he's rebounding after a bout of anxiety (mild or, as in today, severe). I credit 2.5 days of Augmentin and we'll soldier on and try to put this afternoon behind us.
Thanks SO much everyone for your input!
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YES! And I am so glad you are showing early positive signs! Give it another 3 days & then call it a sucessful intervention. And by the way, 5 weeks is EARLY! I am embarrassed by all you guys that are "on it" so early in the disease. That's what antibiotics did for us - stopping the "slam against the back of the head anxiety" and turned it into stuff that could be dealt with. Hope to hear this continues.
Thank you! I was hoping I wasn't just looking at everything through rose colored glasses. We are only "on it" this quickly because of this group and leads to docs like Dr. T. The previous episodes went improperly treated even when they were properly diagnosed...ugh! Those days are gone. We're smarter and stronger now. You really nailed it with the "turned into stuff that could be dealt with" truth. Thanks so much for taking a minute to respond!
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ds16 has had 2 full days of Augmentin 1000 mg XR twice daily (he's also on day 12 of azith). He's still having a couple episodes of anxiety when one of his triggers is present but it has not spun into a full panic attack. This is unusual for him. Typically once the wheels get set into motion, he's unable to wrestle the anxiety down until we go through the full spectrum including the panic attack. There appears to be a lessening in the severity of the anxiety. I'm hopeful that this is indicative of augmentin doing its job. Can an abx switch (to augmentin) produce a result that quickly in a child who was 5 wks into an exacerbation before starting treatment?
Many thanks,
Gat's mom.
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Friends - here's a brief update: We switched my dd from the augmentin to zithro and she has been on it for 6 days. She is SO MUCH better today...like night and day since last Tuesday, I can't believe it's the same child. When my child has had such a hard relapse it really shakes my faith in this entire thing. I question whether this really is treatable, if she is just plain insane and that's the way life is and I should stop deluding myself, and I lose all faith. But then to see such a change and the only thing that is different is abx restores my faith and hope that this is treatable and that I have to keep on fighting and trying until this is a distant memory. Thanks to all of you on this forum, I'd be lost without you!!!
Such good news!
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My ds16 is 5 wks into this episode, his third major one since age 8. first, 8 days of azith 500, 2 days ago that was up'd to 750mg. Began Augmentin 1000mg XR today at 1p.
For the past 3 days at 2:45p (umm, exactly) he has had a huge panic attack, today's lasted nearly 2 hrs despite Klonopin .5mg which normally helps him immensely. During the panic he has stiff jerky movements, rage, and utter panic because his stomach hurts and his biggest fear in life is throwing up.
He hasn't been engaged in the same activity for any of the past 3 days at 2:45 and is actually quite unaware of the time of day, so I'm completely confused as to what might be happening, seems an awfully big coincidence. This is our first big abx trial and I've never prayed harder or more diligently for anything in my life. A huge profile of bloodwork is being drawn on Monday including the Cunningham tests.
Does anyone else with an older kid have separation anxiety and contamination fears as their catalyst to overwhelmiing anxiety? If so, can you offer any advice or guidance? I haven't been to work in a week, I can't keep this up for long financially and I can't seem to stop crying which isn't helping anything.
Many thanks,
Gat's mom.
It is very comforting though I hate the thought of another family going through this. I've been through it twice before without this board. I'm so thankful, even in the worst moments, for this group. It makes so much difference in my day to day life.
Thank you!
I am sorry I don't have any ideas of what is happening with the panic attacks, but I wanted to let you know that my daughter is 19 with high anxiety and one of her biggest fears also that presented when this all began was the fear of throwing up. She has a lot of separationg anxiety. She has been treated wtih augmentin for the past 28 days and is feeling better but I will say that she did experience some panic during that time where she became somewhat dizzy and then just didn't feel well and the panic set in, it happend about 3 times while she was being treated with the augmentin and were short lived episodes. We are seeing how she is feeling off the augmentin now, she feels better but it is hard to tell stomach wise since the augmentin seemed to bother her stomach some, she wants to see how she feels without taking anything for a bit and see where her level of anixety is at this point. sorry I didn't have anything helpful for you here but thought maybe knowing about the throwing up and anxiety at an older age might be a bit comforting knowing you are not alone. I cried too, lots of time when I got out of the house on my own, it's a release.
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Just wondering, has anyone else had a child to have a compulsion with eating? I know my son will be 13 in March and it is normal at this age for them to have a big appetite. However, he is litterally obsessed with food right now. He wants to stick something in his face constantly.
Example: This evening when he came home from school, he put his bookbag in his room and went straight to the fridge and got a soda. Then to the cabinet and got a snack cake. Not 5 minutes later he was eating cheese nabs. I told him I had spagetti on and it would be ready in a few minutes. When I gave him the spagetti he handed me the cheese nabs back. My husband will not eat spagetti, he had salsberry steak and mashed potatoes. Before you couldnot have made Harley eat salsberry steak. Anyways as soon as he finished his bowl of spagetti he asked his dad if he could have some salsberry steak and mashed potatoes. When he finished this he got a bottle of water and drank it straight down. About 10 minutes later he eat a cup of apple sauce and grabbed a banana off the table. All of this was between 4 and 6 this evening. When he got the banana I dared him to get anything else for a while. I told him his belly needed a break. At 6:40 he was back in the kitchen, got another water and a pack of peanutbutter and chees crackers. I told him he wasn't allowed to have anything else tonight. Of course he tried and I made him stop. But if he could have snuck and got something he would have. This has been going on for the last few months. If I buy snack packs of candy bars, I have to put them up and give them to him one at a time, because he will grab the whole pack and run to his room and set and eat everyone of them. I couldn't tell you how many empty cracker wrappers and candy wrappers I have found stuffed away in his room. And if he's not eating, he wants to be drinking something. I know he is growing. Grew 3 inches in the last 5 months, but he also put on 20 pounds in the last 5 months. Has anyone else seen this compulsion out of there child.?
Mine's 16 and can really put away some food. That's just a teen boy in many ways. I love to see a healthy appetite on him since when he's really struggling, he'll limit the amount of food he allows himself to eat. Since boys at that age tend to pack away a lot of food, I'm kind of careful about what's in the house. Soda only comes in 2 liter bottles and even then its only on a night when we have pizza. I always have iced tea and 2 types of juice in the house. Water at all meals. No snack cakes but I do make cupcakes (for portion control)and cookies occasionally. I'm more apt to make an apple crisp using fresh apples and oatmeal or rice krispie treats to cut wheat. I put Yoplait Whips yogurt cups in the freezer for a cold snack. Always have grapes and will move heaven and earth to get my hands on fresh blueberries regardless of the season (and often price). I've found that if I slowly narrow his options, he manages to find a string of suitable substitutes.
Gat's mom.
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Gat's Mom --
On a previous "Augmentin XR" thread here, it was noted that XR should be given immediately before a meal, as opposed to after it. I've not circled back around to research the efficacy of that, or to see why it might be the case. But our DS12 is very sensitive to stomach and elimination issues, also, and we're finding that taking the XR before he has his meal, eating, then taking his other supplements, and giving him probiotics in between XR doses, is working well now. We're also big on bananas and apple sauce because he's more afraid of diarrhea than he is of vomiting, and the diarrhea seems to be the more eminent threat for him, typically.
Thank you! I will try this today with XR dosing. I have now come to believe that what he had yesterday might have been some legitimate stomach pain due to a stomach bug that is going around and half our county has presently. Last night at 11:30 he started complaining of stomach pain again. I jumped quickly to Klonopin and Phenergen to stave off a panic attack. He was nervous but it never evolved to something horrible. I sat with him in his bed watching tv til 1a afterwhich he went to sleep. He saw his little girlfriend on Tuesday and sure enough, Wednesday she came down with it. He's been fretting about that fact all week and I think we might have been seeing a little of that bug here yesterday.
Regardless, I have a new plan for XR dosing. I have been waking him up early in the morning to get probiotics into him on an empty stomach. He rolls right over and goes back to sleep. Tonight I'll be getting up in the middle of the night for a probiotics dose, then again early morning. I know I have a kid with a propensity toward yeast so I really need high dose probiotics that aren't interfering with our long awaited abx dosing. I'll put the advil in the dosing right after the meal.
Thank again, so much for chiming in!
Gat's mom.
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When episodes were the worst, we found that certain foods would trigger panic or anxiety in our son. Seems dairy and gluten were big triggers for him. We had to check ingredients carefully!
We are all but gluten free around here now, an easier transition than I thought it would be happily. He doesn't do a lot of dairy by choice, yogurt is what he likes and I'm happy for the probiotic content. He's boycotted cereal with milk in the morning again and I guess that's probably for the best right now. I know when he's not in an episode, no foods bring him down. He eats like a horse and has no negative backlash to anything.
Thanks for your input!
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Can Strep infection Cause TS: Is PANDAS Real?
Join us for a Webinar on February 10
Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/774906745
There has been speculation that some childhood immune system disorders may have a link to TS. Parents of kids with TS and healthcare professionals who treat them will want to attend this important upcoming presentation which will cover the latest information about PANDAS (pediatric autoimmune neuropsychiatric disorders) and its potential link to TS.
Roger Kurlan, MD received his BA from the University of Rochester, and MD from Washington University, St. Louis. Dr. Kurlan was a member of the faculty in the Department of Neurology, University of Rochester from 1984-2009. Recently he became the Director of the Movement Disorders Program at the Atlantic Neuroscience Institute, Overlook Hospital, Summit, NJ. Dr. Kurlan is the founding and current principal investigator of the Tourette Syndrome Study Group and has more published than 50 articles related to TS.
NOTE: You will not hear audio over your computer only the video component is there. You must dial in to the number provided, in a confirmation email containing information about joining the Webinar, to get the audio portion of this webinar. The webinar is scheduled for Eastern Standard Time.
Professional Development credits will be offered upon completion of the exit survey.
Title:
Can Strep infection Cause TS: Is PANDAS Real?
Date:
Wednesday, February 10, 2010
Time:
7:30 PM - 8:30 PM EST
After registering you will receive a confirmation email containing information about joining the Webinar.
Saving Sammy page 201
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If it means anything, I think all our kids have Dr Jeckyl and Mr Hyde syndrome. My son did the same. One minute he wanted to die , even used those words. he'd say how he hated me and would hit,kick, etc. Then ...bam....all lovely hugging, etc. One time I even asked if it was him. I was thinking split personality.
As for anxiety, my son's would reach a limit two different ways. One was when he was in the middle of an excaerbation and he had the big contamination fear. If he thought he saw you possibly touch your face, he'd go over the top freaking out. Then he had during recovery, extinction bursts of anxiety when we would try to get him to overcome an OCD habit/ritual and that building anxiety can be very overwhelming. Unfortunately, sometimes you do have to ride them out. When a child or teen is in an exacerbation, reason is gone. You can't explain to them why what they are doing doesn't make sense. You can't threaten them with ultimatums.
If you think it's stomach issues, be careful with the Ibuprofen. Make sure that is taken with something like milk so it coats the stomach. I give my son Ibuprofen with his antibiotics as well.
He had the abx today 30 mins after a good hot lunch. Tonight's will be after some ice cream, just to make sure. Yeah, it was a little tough to hear out of him today, "You're not doing anything to help me!!" ugh. I do know, though, that he is sick. There's never been a question in my mind about that. No typical teen behavior can hold a candle to a PANDAS episode!
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There were no allergens in more abundance than normal today, or any of the last three days. I have noticed, though, that he is more sensitive to his usual allergens when he's in an exacerbation. Everything is harder for him when he's in a backslide! Today's event came while he was trying to do some math homework. Should have been material he could breeze through but he had been at it for 45 mins and completed 5 problems. Maybe that's what got him frustrated. I do KNOW that frustration, regardless of where it comes from in him, is a direct line to panic.
Tomorrow, in an attempt to break the 2:45 curse. We'll be doing a dose of magnesium in some grape juice after lunch and aiming for a happy, content place. We'll see how that goes.
He's taking an epsom salt soak tonight for sure then later when the water heater recovers itself, it's my turn!
I appreciate your help!
Is he being exposed to any particular allergen at that time, or could it be something he's eating for lunch that he may be having a reaction to, even if he is normally only subtly allergic? I have had only one really major panic attack like you described during my life, during a significant exacerbation, but it was notable because it occurred at the allergist's office during allergy scratch testing. I got the the scratches, started getting huge inflammation at the scratch sites, and then BAM I'm in the ER with a massive panic attack.Do you have some valium or something you can give him just to get through it? If it's so predictable, would an epsom salt bath at that time help? Not a real solution but at least to get through the next few days.
I have noticed with both myself and my ds6 that during an exacerbation, allergens exert stronger triggering effects than normally. I think the immune system is so ramped up that there comes to be a lot of overreaction to any kind of immune challenge.
My ds16 is 5 wks into this episode, his third major one since age 8. first, 8 days of azith 500, 2 days ago that was up'd to 750mg. Began Augmentin 1000mg XR today at 1p.For the past 3 days at 2:45p (umm, exactly) he has had a huge panic attack, today's lasted nearly 2 hrs despite Klonopin .5mg which normally helps him immensely. During the panic he has stiff jerky movements, rage, and utter panic because his stomach hurts and his biggest fear in life is throwing up.
He hasn't been engaged in the same activity for any of the past 3 days at 2:45 and is actually quite unaware of the time of day, so I'm completely confused as to what might be happening, seems an awfully big coincidence. This is our first big abx trial and I've never prayed harder or more diligently for anything in my life. A huge profile of bloodwork is being drawn on Monday including the Cunningham tests.
Does anyone else with an older kid have separation anxiety and contamination fears as their catalyst to overwhelmiing anxiety? If so, can you offer any advice or guidance? I haven't been to work in a week, I can't keep this up for long financially and I can't seem to stop crying which isn't helping anything.
Many thanks,
Gat's mom.
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Does he have a BM afterwards? Sorry, there's no delicate way to ask that! Sometimes my daughter seems to break down for no reason at all- then about 1/2 hour later she'll produce a motherlode, and then it all makes sense!
Yes! I've just always attributed that to a little post adrenaline/cortisol release, almost like an IBS. He, otherwise, has very healthy bowel habits. BM's do not normally produce anxiety in him. Is that always an issue for your daughter? How old is she?
Thanks!
My daughter is 15. No, this is not always an issue for her- just that the post ragey BMs are extraordinarily large. It never occurred to me that the adrenaline/cortisol
could be causing the BM. I always thought it was the physical discomfort of intestinal pressure triggering the episode...hmmm, chicken or the egg?
No kidding, if I say "chicken or the egg" once per day, I say it a dozen times regarding his behaviors and what is either the cause or the effect! I wouldn't wish this on a soul, but it is so comforting to remember that we are the not the only ones.
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Does he have a BM afterwards? Sorry, there's no delicate way to ask that! Sometimes my daughter seems to break down for no reason at all- then about 1/2 hour later she'll produce a motherlode, and then it all makes sense!
Yes! I've just always attributed that to a little post adrenaline/cortisol release, almost like an IBS. He, otherwise, has very healthy bowel habits. BM's do not normally produce anxiety in him. Is that always an issue for your daughter? How old is she?
Thanks!
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My ds16 is 5 wks into this episode, his third major one since age 8. first, 8 days of azith 500, 2 days ago that was up'd to 750mg. Began Augmentin 1000mg XR today at 1p.
For the past 3 days at 2:45p (umm, exactly) he has had a huge panic attack, today's lasted nearly 2 hrs despite Klonopin .5mg which normally helps him immensely. During the panic he has stiff jerky movements, rage, and utter panic because his stomach hurts and his biggest fear in life is throwing up.
He hasn't been engaged in the same activity for any of the past 3 days at 2:45 and is actually quite unaware of the time of day, so I'm completely confused as to what might be happening, seems an awfully big coincidence. This is our first big abx trial and I've never prayed harder or more diligently for anything in my life. A huge profile of bloodwork is being drawn on Monday including the Cunningham tests.
Does anyone else with an older kid have separation anxiety and contamination fears as their catalyst to overwhelmiing anxiety? If so, can you offer any advice or guidance? I haven't been to work in a week, I can't keep this up for long financially and I can't seem to stop crying which isn't helping anything.
Many thanks,
Gat's mom.
We give the antibiotics together and as long as my dd eats food with them, she is fine. Yes, separation issues are huge here, not sure if they are the catalyst to the anxiety though, rather one symptom of many.
No advice really, other than to remind yourself that he is NOT DOING THIS TO YOU. He is sick and he can't help it. I cried all fall and it didn't help but I couldn't help it.
Try giving him some Advil and see if it helps. It may reduce inflammation in the basal ganglie and reduce his symptoms. I give it at the same time as the antibiotics with no problem. (with food) It helps my dd a LOT.
I give the probiotics mid day usually. In between the two doses of antibiotics. Sometiems I give them as early as two hours after antibiotics and so far we've mostly kept the yeast at bay.
Hope that help. Hugs to you. Sorry you are going through this. Glad you found this forum though.
Angela
I'm so thankful for this forum. I assess blessings every night before sleep, this forum has been at the top of the list for weeks. He's been doing well with Advil independent of abx. I will see if I can get advil in with abx. I always make sure there is food to minimize stomach issues. I hit his first dose of probiotics while he's asleep, wake him up enough to take it and he rolls over and goes back to sleep. I'll add it again mid day. He is a yeasty kid so I'm pushing kefir and yogurt too. We're also pretty darn close to gluten free around here.
Vickie, AFTER the meltdown, he's fine, nearly perfect. Today he was a little tired because this one went of forever. He goes from telling me he's ready to die to telling me a movie he'd like to see...all within the span of an hour or two.
He recovers, then I sit on the edge of the tub and tall apart. If he sees me cry when he's in a rage it only makes him more angry. I'm with you, Angela, it does no good but I just cannot hold it back.
Thanks so much for your response, ladies!
Gayle
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Are you giving his meds at the same time everyday? Are there any constants near that time- like a train whistle or some other thing in the environment that could trigger something?
No constants. Yesterday we were in the car. Today he was working on some math. We're still settling into a routine with meds now that he's not in school. The last meds before todays events were 1.75 hrs before and it was the Azith AND Augmentin together. My pharmacist said he could take them both together but I wondered if that wasn't too much to hit his gut all at once. Yesterday's we were out running week overdue errands and I thought I just kept him away from home too long. The day before that, I was trying to leave and head to my office for just 2 hrs so I assumed it was acute separation anxiety. May all those are accurate and today it was the meds. Any idea what the space between abx and probiotics needs to be? I will say I'm more than a little apprehensive about 2:45p tomorrow and I'm going to split the 3 dosings of abx just to be sure.
Thanks much!
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My ds16 is 5 wks into this episode, his third major one since age 8. first, 8 days of azith 500, 2 days ago that was up'd to 750mg. Began Augmentin 1000mg XR today at 1p.
For the past 3 days at 2:45p (umm, exactly) he has had a huge panic attack, today's lasted nearly 2 hrs despite Klonopin .5mg which normally helps him immensely. During the panic he has stiff jerky movements, rage, and utter panic because his stomach hurts and his biggest fear in life is throwing up.
He hasn't been engaged in the same activity for any of the past 3 days at 2:45 and is actually quite unaware of the time of day, so I'm completely confused as to what might be happening, seems an awfully big coincidence. This is our first big abx trial and I've never prayed harder or more diligently for anything in my life. A huge profile of bloodwork is being drawn on Monday including the Cunningham tests.
Does anyone else with an older kid have separation anxiety and contamination fears as their catalyst to overwhelmiing anxiety? If so, can you offer any advice or guidance? I haven't been to work in a week, I can't keep this up for long financially and I can't seem to stop crying which isn't helping anything.
Many thanks,
Gat's mom.
Realistic expectations
in PANS / PANDAS (Lyme included)
Posted
Very true. We've actually come to learn that the panic attack is a direct response to a thought that enters his mind that scares him. Those thoughts sometimes come through an obvious trigger (a friend telling him that she's been sick and throwing up) and sometimes a not-so-obvious trigger. He is so easily overloaded right now and his ability to filter incoming information is out of commission.
The hellish middle school exacerbation also carried 12 hour sleep cycles. As soon as he was well, he went right back to normal sleep patterns. Like you, I believe he is healing at his best at that point, unencumbered by intrusive thoughts. We all heal more effectively when relaxed.
Thanks, Vickie!