JoyBop

Its so sad! The truth is, its a great little school with wonderful teachers. It's just unfortunate that we lost our wonderful principal who always advocated for the kids AND the teachers. This never would have happened if he were still here. After we withdraw him, he is the first person I'm going to notify as he was promoted to assistant superintendent. I happe. To know there are at least 2 other kids that were withdrawn this year. He is going to ave a fit! Does anyone else have a kid who becomes too overstimulated in places like gym and the cafeteria? How does your school/teacher handle it? Any suggestions could seriously help as we love forward to another school.

That's interesting qannie about your nephew. It seems that many mental illnesses can trigger an overstimulation episode to mimicking the symptoms of adhd. For my son it seems to be the thing that lingers, along with mild OCD and anxiety, but the hyperactivity seems to be the one that gets him in all sorts of trouble. I'm beginning to think with PANDAS that a lot of doctors are listing adhd as one of the symptoms (as in diagnosis codes) to describe behaviors that they see, but this can be very different from getting an actual diagnosis of ADHD. I just wish there was some way to help our kids with symptoms that othe kids can just pop a pill for. As I mentioned, I have another child with severe adhd and he pops his magic pill and has 10 hours of perfection.

The former principal (as in last year) was a truly wonderful, gifted principal. He was rightly promoted to assistant superintendent in May. I know him well as two of my older kids were in his school. I will be sending him an email on Wed and I know an investigation will follow. This new principal has for to go!!

We are working with an immunologist who is looking for any global autoimmune disorder. There was 5000k dollars of bloodwork! Quantative IGG levels, protective antibodies to all vaccines, T cell profile, ANA, the list goes on and on.

I apologize if everyone is sick of me talking about ds8 and his pathological situation at school. I think I'm going to explode! I've already enrolled him in a small private school to start feb 10. The IEP meeting is feb 5. I was just informed today by the psychologist that her computer crashed and I may not be receiving any test results on Monday as promised. Is this a game?! In the meantime my son is out of control in school and there has been nothing done. I have begged for an aide to be placed in the classroom to no avail. 20 students, 1 teacher and 6 of the kids are major behavioral problems. My kid is definitely one of them. His biggest fear is gum , and wouldn't you Know his teacher is now chewing!! On Tuesday he ate a cupcake out of the trash can while all the kids watched. He has a compulsion to eat things off the floor, food and non food items alike. This is a first for the trash can! The kids were mordified! He has been a totally dysregulated and getting in trouble all day long, loosing his recess, having to sit at the "quiet table" at lunch (the worst punishment for an 8 year old) being asked to sit out on the bleachers in gym. What more can they take away from this kid?! Meanwhile, no additional supervision or hp has been offered whatsoever. He feels like a failure and a bad kid. He is a ring on his compulsions and is a hyperactive wreck. He has lost all his friends and I am beside myself! I wish I hadn't decided to keep him in until this stupid meeting that is happening wed but I need that IEP eligibility as my safety net. Of course the only communication I get from the teacher is when I ask a direct question. Don't you think a parent should be notified if their child is eating out of the trash can or playing with pushpins from the floor?!? This teacher reached into his desk one day and got stuck by one if his pins and did t take them away from him. Please say a prayer for me and DS that we will survive the week until he starts his new school! I sincerely hope that we made the right choice and that this new school will be a supportive and positive place. Thanks for listening.

Remember that a therapeutic dose is every 6-8 hours. If you really want to knock the inflammation down, you have to keep on too if it, otherwise you are just chasing your tail. What I mean is, the medication works for 6 hours (well that's how often you can take it, although I find it works for 4.5 hrs). If you take it as directed you have the chance to keep the inflammation down. If you wait 12 hours I take the med again you have let the inflammation creep back in for an additional 6 hours and now you have to start the process all over. 3x a day is ideal if you are really looking to wack down inflammation. There are many on this forum that find that twice a day is very helpful. You will have to experiment for yourself. Just don't give more than the amount on the bottle for your child's age/weight.

I have an iPhone 5 and am up to date on the most recent software. It lots me out quite frequently. Sometimes I will be in the middle of a post or message and go to hit send and get the error message and have to log back in. It's only on my phone that this happens. So frustrating. I used to never have to log in.

Anyone can have any kind of aside effect with any kind of medication. So although most of us have not seen increased tics, it could cause it in yours. With that said, it could also have been coincidental. Motrin works relatively fast and wears off within 4-6 hours. To really give it a shot you shou give it every 6-8 hours for a day or two and see if it makes a difference. You don't have to give it during sleep bourse, of course. I woukdnt recomend giving it for more than 5-8 days just to help manage a flare. I found it to be such a godsend that I gave it to my son twice a day for 6 months. I found out the hard way that that's not a good idea as it made him anemic. But I would not hesitate to use for the short term for flares.

Thanks for coming back to share your great news and support! Its important for us to realize that there are recoveries, and most of those that have children that are now well are not still posting on the forum, because happily they are doing other things! So its great to hear your story and that your daughter is doing so well. I hope to join you on the other side soon!!

SSS, my son has to be scoped to monitor for inflammatory bowel disease and eosiniphillic esophogitis, not your average food allergies. All of his triggers in the past have been non IgE mediated and blood testing and skin Prick testing will not help. Yes it's somewhat invasive, but is necessary for him and done under anesthesia. He's been having them done since he was an infant and is not a stressor for him. The reason I post this on here is that it will be very interesting to see if the inflammation from his intestinal tract could be the culprit for the chronic pandas symptoms. His team of doctors think there is a connection. If they do find evidence of inflammation or strictures in his esophagus he wil have to eliminate foods one by one and get des oped until we find the culprit. Does a one know there are standard lab tests for yeast? I know quest had a stool antigen test.

If the scopes show inflammation and signs of allergy we will have to do an elimination diet, no choice. The harder part will be if the scope comes out fine, we will have to decide wether or not to do a special diet. We did take him odd dairy, gluten and beef for 4 months starting last Sumer but it made no difference in his behavior, just made him more anxious and obsessions. I'm also wondering if the pandas induced adhd is the name if other families existence as well.

Such great input! First, DS is 8. His allergies were all non IgE and caused intestinal bleeding and swelling. Many hospitalizations when he was younger. Now they understand what it was, but back then there was no clue. Imagine having a child with severe PANDAS prior to 1998 and dr Swedos discovery. He is back under the care if a GI doc who works with all the pandas specialists so we are in great hands. Please, tell me, how do I check for yeast? He's been on abx for so long. He does take a probiotic. Also, Motrin helps tremendously. However, he was anemic, and I suspected it was the Motrin that we were using long term. I discontinued the Motrin and rechecked the CBC and all was restored. That confirmed that the Motrin was causing a bleed. Another reason he is being scoped next month. I've been searching for cur cumin or another supplement to reduce inflammation bc I won't give him Motrin now for a period of more than 5 days.

Well those are loaded suggestions. Yes, there are tons of OCD and anxieties at play. When he is "well" (as in new baseline if well which is not really well but not in a flare ) he has mild to moderate OCD and anxiety. But the adhd like behavior is through the roof. When he is in a flare its a complete disaster with melt downs, freak outs, bizarre and strange hyperactive behavior. But "well" here looks like a child who has great difficulty doing much of anything. He appears happy and bouncy and has a happy go lucky attitude but he doesn't function very well do to hyperactive behavior, complete lack of ability to focus, silliness, and complete loss of self control. Like adhd on steroids. As far as the diet goes, he's obsessed with food and eats everything in sight. He eats for comfort, and sometimes isn't even aware he's eaten. Example, in the airport on the way to the NIH he asked for a 12 inch sandwich instead of the usual 6 inch. I thought it was a healthy sandwich so I bought it for him. He devoured it in 6 minutes. A few minutes later he looked down at his empty plate and had a fit, accusing me of eating his sandwich. He really had no recollection of eating it and thought he was still hungry. I know, we have work to do! He's very lean but a little rounder than he used to be. He has an endoscopy scheduled for the 13th if next month. They are looking for signs if allergy and inflammation, and if they find any he goes in a serious food elimination diet starting with dairy, soy, gluten, beef and food coloring since those were the foods he used to be severely allergic to. I'm dreading if that happens due to his love of food right now. It will really complicate things. But we have don't it before and we will do it again if need be. The adhd like behavior is the one thing he can't hide a cross any environment. He does hide his anxiety and OCD in school. Perhaps you hit the mail on the head about the compensation. Can anyone elaborate on that theory?

You could ask what their policy or procedure is for these types if questions. If they say they don't have one, you may not be able to get the kind of care you're looking for.

Does anyone understand my question? So many of our kids have life altering ADHD, hyperactivity, impulsive behavior and executive functioning problems. But often our pandas kids seem to have it so much worse than classic ADHD kids, and the medications often don't work in the pandas cases. I have a non pandas child with severe ADHD. Concerta is a lifesaver for him and while the med is active my child functions perfectly. My pandas child's biggest problem right now is his ADHD like behavior. It prevents him from having friends, participating in school, getting along with siblings, everything!! Do you think there is a difference between reg adhd and what our pandas kids exhibi? I think the fact that the meds do the opposite proved that its a result of a different mechanism all together. ADHD is a result if the frontal cortex not getting enough stimulation. Pandas symptoms come from someplace else Any thoughts?

It was prescribed for my DS but we have decided against it since all other meds have been disastrous. I was told it would calm him down and help with anxiety and hyperactivity. In glad to see others experiences.

Insurance will only pay for a face to Face meeting. Doctors can bill you for any service that is "uncovered". I've never heard of any docs billing for emails or simple nurse communications, but it is ethical for them to charge you if they are giving patient care on the phone, as opposed to routine follow up issues I work in a busy primary care office. The patients will call with their questions. The receptionists will ask in detail what their question is. It goes to the doc in the computer system as a phone message. In the docs spare time (unless it's flagged urgent, it gets handled in almost real time) the doc types up the answer and depending on the complexity has either a receptionist or nurse return the call with the info the doc has written. These types of things can include questions about labs, medications, quick questions about care plan, ect. If you have a complex or new issue the doc will ask you to schedule an appointment bc its risky to give care over the phone and you really can't bill for it. It's very reasonable to call and request these types of things but you will not get a call back from the doc directly. The doc will call directly if there is a bad test result or a very urgent issue. However, if its really urgent the office will likely refer you to the ER. The only way to really email with doctors that are HIPPA compliant are through the patient portals keep in mind that when you email your doc through the system, most if them are set up as phone messages, and are monitored by receptionists in the same way as I described above. If the message seems urgent enough the doc might answer themselves but usually it goes through the office. Most docs do and will speak with other care providers when necessary and appropriate. Good specialist will write letter and forward office notes to primary care givers. Not all of them do, but it's the right thing to do in medicine. Our primary care docs talk to specialists all day long concerning patient care. So my answer to that question is yes. The bottom line is, if you have a question such as, can I give my child Motrin at the same time as clonidine, it's very appropriate to call the office and ask to leave a phone message for the doctor. If the question is, my child is in a flare, and he sprained his ankle and I can't get him to leave his room and he's screaming at his sister, what do I do? Then of course an appointment is necessary. Most docs won't just pick up the phone and chat away with you about all of your questions. That's what office visits are for. Button really should be able to communicate with the office to get answers to specific questions within a few days. I hope that sheds some light on how at least our office operates. Btw, our office loves when people call and say if like to leave a phone message. Please let me know approximately how long I can expect to receive my answer? May I call back in a few days if I haven't heard? They will bend over backwards to help. But if you call, demanding to speak directly to the doctor or to receive a call back, they may get irritated. Just because it doesn't work that way, and doctors would have to make calls such as those either early in the morning, lunchtime, or late at night.

Well that's a relief!! Yes, holding it can can definitely cause all kinds if pooping issues!

I would try to treat for constipation first. That can cause accidents because everything can get backed up. Although it usually causes more diarrhea, you can have a condition called mega colon when it gets stretched out from the pipes being built up. If not, I would ask if he is having any OCD or anxiety over toilet issues. Its possible with pandas. But my last bit of advice, is that when I googled MS and children that that did pop up as a symptom. Given the positive o bands and other suspicions you have had I would t wait for any more signs. Hopefully it's not that and you can rule it out but there's a little too much coincidence going on for my taste. I think this is what swedo meant by pandas plus. These other autoimmune disorders that can exist with pandas.

While we are discussing technical difficulties....does anyone else have the problem of having to sign in every 10 minutes? This is on my iPhone. It remembers me, but constantly signs me out.

I would schedule a follow up appointment with him and get the answers yourself. What did he recommend for follow up? Its really illegal to bill you for a phone call...as least through insurance. It requires face to face, and for the patient to be present in order for them to bill. Offering to pay for 5 minutes of his time is probably not legal in a hospital setting. I know Dr. T does phone consults, but he is not dealing with managed care or insurances. There are two ways to get the answer. 1- call his office and leave a phone message, asking for the question to be answered. REalize that the return calls are usually made by a nurse, which is not a bad thing. If you ask a specific and clear question, its a great way to get an answer. 2- schedule a follow up appointment. Tip- If you call asking for the doctor to call you back, and its nor regarding a life or death question, the office might think you are a pain in the neck. (no offense.) Most docs will make calls but only for very complex issues or if there is a special relationship. Just my advise after being in the medical field for so long.. Good luck!

I think sometimes its best to minimize what your child hears because it is all very frightening. At least until he is not in a flare when he can handle it better. It's very scarey to them what they are going through, and even though they can't control these fears, they know that its "not normal". The whole scenario can really damage their self esteem which can perpetuate so many symptoms, as a have found. I recommend Bethaloneys new book, Childhood Interuppted. It will walk you through the answers to so many of your questions. If not give you great, practical advice. There are many tidbits quoted by doctors that I really enjoyed reading in the book as well. I love her positive advice as she covers topics on how to address the school, speak with the child, and deal with the medical end of things. I think this is a great resource! You will need to deal with the school. Some of us here have had hellacious experiences and some of us have had miraculous interaction with schools, and every thing in between. Some accept the pandas diagnosis and some argue. I would not allow our school to deny a medical diagnosis and written documents by our doctors, but getting him the help and services he needs has been a different story. Hopefully your school will be supportive. You can bring info on pandas so they understand, but ultimately I would focus on your child's symptoms. Those are indisputable , and are after all what they will have to cater to. A 504 is a good place to start. Consider homework modifications, a plan in case a panic attack or melt down occurs, or whatever you think your child's issues will be.

T Anna thank you for Posting that! Dr swedo herself told me my son has PANDAS PLUS and I'm still kicking myself for not asking her what that exactly means. My child has had very severe and complicate GI issues in the last that are autoimmune and seemingly creeping back in. Perhaps the plus could mean any other autoimmune complications. That post was awesome to read, thank you!!

Could it be that he was too dehydrated? Did the nurse have trouble placing it? Sometimes you can feel medication going in. Did that part freak him out and cause anxiety? Synthroid should not have caused any complication with his procedure. I have no idea about the steroids. I would question if it could have been anxiety or a bad needle placement. Did the nurse or prescribing physician have any input?

Keep in mind that when kids are on abx their throat cultures can be a false negative. Make sure you follow up with repeat swab on sibling. Good catch!!