911RN

In one of the other string of posts you said that PANDAS knowledgeable docs usually only order low dose Zoloft- not standard, higher doses. Or else, kids can become "activated". What did you mean by that? Are there any resources you can share where I can read more about this effect with SSRI's and PANDAS or is this mainly anecdotal from docs? The reason I ask is my DS11 (113 lbs) was started on low dose Prozac 10 mg for OCD behavior a little over 3 weeks ago. He has had no negative effects- tolerating it fairly well. No adverse side effects but no real improvment in OCD behavior- about the same. His OCD behavior is not debilitating or pervasive. Just odd and quirky. I called update to Neuro (as requested) and his reply was to increase to 20 mg since he was on a really low dose. Now, I'm wondering if that is the right thing or wrong thing based on what you said about lower dosing being better for OCD PANDAS kids?? I am increasing to 15 mg for 5 days (on my own utilizing the meds I have) then going to 20 mg. We treated my son this Spring for suspected PANDAS- motor and vocal tics resolved after 82 days of high dose Azithro. We have since stopped Azithro as we felt we had reached max benefit. OCD has stayed about the same. No better, no worse after stopping Azithro or adding Prozac. No further flares noted, Strep free. BTW, the one thing that is NEW on Prozac is prolonged teeth grinding, in his sleep, at night- he has NEVER been a teeth grinder EVER in the past. Anyone ever see this emerge with SSRI's? I used to do so as a child- remember waking with my jaws aching:0) My older son (14) used to do it when he was much younger than his brother is now. This child has never has been a teeth grinder- until now- with addition of SSRI. Odd, huh? He stayed in our room over July 4th holidays as we had family guests in his room.Wow- I put my hand on his jaw a few times just to try to get him to stop since he was going at it!! Prolonged periods and multiple times per night. Woke me up! He was clenched so hard and tight it was like a snapping turtle! Could not have opened his jaws with two hands manually if you had tried with all your might. Afraid I am going to have to get a night guard if it continues so he doesn't ruin his teeth! Next step is to wean Intuniv 1mg daily- he has been on it about a year. Some say that makes OCD worse? Any thoughts or knowledge on that? His OCD was not as bad in previous years so I wonder if that has been playing any role in his uptick in OCD behaviors. Want to wean Intuniv entirely after he is on Prozac for 6 weeks or so and see if it makes any difference??? Goal is just to get his med regime to lean and mean on Lamictal and Prozac only. Already discarded Fish Oil and Probiotics with no negative backlash. Sorry, for so many questions but your comment struck a chord with me and our current situation. Just wanted to pluck your brain on the activation comment with higher dose SSRI's. Thanks, in advance, for any feedback:) Also, is Zoloft preferred over other SSRI's? Neuro suggested Prozac to tamp down OCD and I just went wih his suggestion. Think he probably choose it because it is FDA approved for kids my son's age? I don't have any strong feelings pro or con on either one. This is a trial and learn for us. I'm a upstanding member of The Church of What Works- LOL! Don't know until you try.

It is doubtful that 1 day of Zoloft would cause depressed thoughts. SSRI's take several weeks to take effect and up to 3 months to tamp down OCD behaviors. He may have been headed for the depressed thoughts and initiation of Zoloft was just coincidental. If you continue on Zoloft and he just worsens rather than getting better- could be Zoloft is not a good fit. Many say PANDAS kids worsen on SSRI's? My personal opinion is that a 7 year old cannot be Bipolar. This is voodoo psychiatry when they cannot explain a child's presentation so they throw out a dx like Bipolar. Bipolar was always considered a older adolescent/young adult onset- in years gone by...they have just recently started diagnosing children with Bipolar.If you read some of the literature and research on this- there is much disagreement within the mental health community that children can be or should be diagnosed Bipolar. Anyway, is he still taking antibiotics for PANDAS? Has there been any recent illness for your son or family that may have caused a PANDAS flare? Severe depression and obsessions in a young child is heart breaking....I'm glad you have appt with Dr L coming up in August. Hopefully, there will be some answers soon for you and your child. A steroid burst certainly seems reasonable to see if you can break him out of this cycle if docs are willing to order??!! Hang in there- this is tough stuff, I know:(

Clonidine is not Klonopin. As Guy123 said. Clonidine is a BP med similar to Tenex. Klonopin (generic Clonazepam) is a benzo. Low dose benzos can be very effective for anxiety/tics and the risk of benzo withdrawal is easily averted by a slow wean once and if you decide to take person off of them. No different from many other meds that must be weaned. No medication is without risks or side effects. If carefully monitored and being suggested by child's MD...it is certainly worth a trial to note response. Every person is different. Many people have safely taken Klonopin without long lasting psychotic reaction. My son has never had any issues with the medication and it does help him with his anxiety. We only give it at night...it never seemed to make him overly tired. He sleeps well but not too much or more than a child his age should. He slept well before the medication, also. Can build up a tolerance and require more and more medication for same response but that has never been an issue for us, either. Same dosage for a year and he seems fine with it. No need to increase.

My DS11 has taken 0.25-0.5 mg Klonopin nightly since he was 10. I have not noted any adverse side effects. It was prescribed by son's Peds. My son's neurologist was concerned it could cause working memory problems if taken long term. However, another opinion neuro liked the med and said he used it often and had good results with med in the kids he treated. I would not be nervous about giving it. If you tolerate it well...he likely will, as well. That's our experience.

I know, I don't want guinea pig try outs either, but I am a bit desperate- we tried a product called Intestimend for the last 3-4 weeks, and while it beautifully reduced my dd6's gut inflammation, the ingredients gave us a huge yeast flair- pulled it, now back on an antifungal :-( I will post how we do with the Lutimax- should be here today or tomorrow. And, while the price was high on Lutimax, and part of me is loathe to 'buy something else' the parent testimony I read was VERY compelling. There was research on the JNI site also- here is link: http://www.jneuroinflammation.com/content/7/1/3 Many benefits for MS!!

I just did alot of research on this last night- the Lutimax site has lots of links to research articles as does just googling Lutimax, Luteolin. My drawback is it states that kids do better on this is if on a low carb diet- lots of proteins needed?? If my son gave up carbs....he would not eat much at all. Very OCD on food choices. One Mom on NIDS forum...I think?? said her child completely stopped visual stimming once on Lutimax. That is not a particular problems for us but I thought it was interesting. She said her child did it badly and continuously and poof- gone- with Lutimax?? Have never tried it but it does look promising... we just can't do the low carb part of it.

I don't consider myself a poop-ologist (thankfully- my DS11 has never had gut or bowel issues , however, I have given enough charcoal for drug overdoses in the ER and see the ending "results" and yes, it does cause BM's to be dark green to black. It is from the color of the charcoal- not from what is being absorbed is my edumacated guess. Iron will do the same thing. I would expect stools to stay this color as long as they are on the charcoal. It does with iron, for sure. I was on high dose iron for anemia during both pregnancies and had dark green to black stools until I went off it. The same is true for any of my patients that take long term iron. Giving daily charcoal is not something you see in mainstream medicine nor something we have ever done with son. Although, with drug OD's- we commonly give a large 1 time dose and their stools end up the color you describe. HTH

My son has been under care of a Neurologist for 3 years (diagnosed with Landau Kleffner Syndrome). For starters, I am surprised (and a little dismayed) that any Neuro would not do a complete Neuro workup before treating a child for Suspected PANDAS, supposed psychiatric or any other movement type disorder. This would include a MRI (at the very minimum). A supporting Pediatrician can certainly order MRI- as could any local Neuro. Depending on where you live and the number of pediatric neurologists (in your area) may influence the ability to get this done prior to July and whom is best to order it- the quickest. The shortest time to see a Peds neuro in our area is about 3 months. Longest is about 6 months. Your regular pediatrician may be able to order is sooner. Any of our children that are not neurotypical, in every sense, should have had testing to look for true medical "reversible causes." Other possible abnormal pathology that could cause any of these issues. More often than not- the MRI's are normal but that should not be assumed or taken for granted. This should be proven and known before going forward with treating children for a disease process that is basically a clinical diagnosis of related symptoms that is not necessarily proven by a defintive test. Simarily, all children should be "medically cleared" before being treated for any type of dx in the psychiatric realm. I had a very interesting case show up in the ER- lady in her late 30's to mid 40's. Had a history of depression- treated on meds in the remote past and then went off them and did OK. Started having fatigue, "depression" and neurological issues- went to her PDoc. Tried on a bunch of different meds for about 5 months with no help. Showed up in ER with slurred speech, entire change in personality, head injury like. We did a CT head- she had advanced brain tumor causing much pressure and shifting/herniation of the brain. Sadly, I'm sure this lady did not make it and had a unnecessary premature death because she was not medically cleared prior to beginning on meds for supposed depression. This is an extreme example but my point is- medical normalcy and pathology should be firmly established before any other type of "treatment" is considered for psych issues, movement disorders, tics, PANDAS etc. This is standard of care. This lady's true illness got missed because standard of care was not followed. She was not depressed- she had a severe brain tumor!! If you already have relationship with Dr L- not sure why it could not be ordered by her and I'm a little surprised a doc of her caliber would treat for anything without this having already been done?? I agree with your colleagues- complete neuro workup needs to be done if you have been on this path for this long and it hasn't been done so far. Just my opinion- not picking on docs- don't see either of the ones you mentioned nor do I have an opinion good on bad on either of them....to rule out reversible causes for neurological symptoms is the starting block... not an ending point. This is medicine 101. Standard of care. 1st year med school. Not any advanced or out of the box thinking. I am not trying to scare you- more than likely- MRI for your child will be normal but that should be firmly established and proven before moving forward with PANDAS treatment.

There is a condition that can cause protein in the urine that may have connection to PANDAS?? It is called IgA Nephropathy. It is difficult to state if this is your son's situation. I think you will likely have to wait to see the outcome of surgery to see if the protein improves or goes away. There is also a condition called Benign Familial Hematuria- this could account for protein in your urine that never turned into anything and the blood in your son's urine?? My experience is is that if any of these conditions are present or suspected then you will be referred to NEPHROLOGIST for your son following surgery (not urology) and they would be able to do 24 hour urine specimens and whatnot to see if these conditions are present or worrisome for your child. Sending my best for surgery.

It is probaly not an allergy. If not itching, not spreading etc. It is probably a sun sensitivity rash from being out in the sun on Bactrim.Bactrim is a sun sensitive medication. BIG no, no to lie out in the sun while taking it or else...get a little heat rash as you describe:) You can continue to feel human- you just have to remain flounder belly white (no tan) and stay out of the sun if you are going to take it! Heat from sun followed by hot water from shower likely brought out the rash. It should fade if you stay out of the sun and take tad cooler showers. HTH!

I researched this after the thread of posts on benefits folks had seen with NAC for OCD- the NIH trial mentioned excluding anyone with high urine oxalytes or tendency for kidney stones. Apparently, while on NAC- one should take 3-4 times the normal doses of Vitmain C which is a BIG No, No for kidney stones. NAC, apprently, can have very adverse effects without the addded Vit C. I liked the idea of trying NAC for my DS10 until I read that. We have strong family history of kidney stone- me, husband and DS10's neurotypcial brother got first one at age 10!! My DS10 suspected PANDAs is the only who has not had a kidney stone and I would like to keep it that way. He has enough issues to deal with:) So, if there is hx a kidney stones- IMHO, would avoid it. Otherwise, from posts and research- has good benefits and is well tolerated.

I have not read the entire rticle yet, in depth, but skimmed it pretty well. Pretty fascinating info. We are on every other day Azithro 500 mg following Schulman's protocol. The Marshall protocol is not just pulsing- it calls for using the drug Benicar, light restriction and a bunch of other contoversial things. However, I, like some others on the board say PANDAS/PITANDS is controversial from the get go- why should any of this be any different?? I'm from the Church of What Works! Thanks for the post- the gal that wrote the paper seems to be a pretty sharp cookie if you continue to read post comments at end of paper.

I sent your reply by PM:)

My son developed his first, "out of the blue", real, known, vocal tics summer 2009- hooting and peeping (bird noises). We were in diagnostic mode, at that time, and on a ramp up of Keppra for abnormal EEG. We blamed it on that. Now, we feel it was likely a PANDAS flare. DS was not bothered by it and we had big neuropsych eval upon us- Neuro said do nothing. Otherwise, he would have ordered Tenex but did't want test results skewed by starting new med. Meanwhile, I was going crazy living in the bird sanctuary:) I researched Inositol and choline (at that time) and put him on it- tics diminished rapidly within a couple weeks on fairly low dose and we noted no side effects. We stopped it once he changed to Depakote. It is researched to be very helpful for OCD (which he did not have at the time) so that's why I posed the question - that is THE main issue now, not tics. Tics have diminished rapidly on Azithro. OCD lingers. THANKFULLY, we have never had return of bird noises in 2 years. Last vocal tics were cough tics which actually bothered him but I could live with. Gone now- so we are both good:) Anyway, the reason I did Inositol/Choline combo (at the time) was I read research they should be given together if given at all. Have a synergestic type effect. Almost like opposing ions- don't give one without the other. If you do- things get imbalanced. You can buy pills that include both ingredients. So, there must be something to this?? Whether that is really true or not- I don't know. That was something I researched 2 years ago and I'm not sure I could find it again if I tried:) Mom- I took in all the info on NAC, too, on this string- no worries on "hijacking" Inositol thread. With supplements- it's all good to get feedback on what works and what does not:)

Has anyone used or continue to use Inositol/Choline supplement for OCD behavior? If so, what dosage? If used in past and stopped, why? Thanks!

My DS10 has been on Lamictal since November 2009. He is 110 lbs and takes 175 mg. This was originally prescribed for abnormal EEG (he has never had a seizure). This string of posts is very interesting and fascinating (to me)now that we are delving into PANDAS- that this med is so helpful for the OCD behavior as a glutamate blocker! He had greatest improvement in behaviors since being on this med except it does not seem to be as effective with exacerbations following Strep. Tics and OCD exacerbation following Strep only improved on high dose Azithro while already being on Lamictal. He was trialed on Keppra and Depakote prior to Lamictal.This was the best for him on many levels. EEG cleared to normal on this med.Interestingly, the other medications are not glutamate blockers. Got worse with verbal tics higher we went with Keppra and worse with OCD behaviors higher we went with Depakote. Both diminished with Lamictal. He takes Lamictal XR formula which is still trade name and more expensive (I have good Rx insurance coverage- not much for me- but that may be a factor for some). We much prefer it to the Lamotrigine generic which is short acting- XR stopped the highs and lows associated with short acting formula. Just throwing that out there for those that have been pleased with med results- switching to XR is only better from nearly everyone I've ever talked to that has made the switch. For adults and children. My adult nephew takes it for Bipolar and confirmed the same effect for him after years of taking short acting formula.More even all day response. Without the brain fog, highs and lows. Which was great to hear as children can't always articulate how meds make them feel. As least, my DS does not:) I was able to "see" the more uniform response in him with switch but it was good to have adult confirm my observations. I've been told that know some of the DAN docs are known to use very high dose Lamictal in ASD kids that have "hot" PET/SPECT scans which shows ring of fire type presentation. Beyond manufacture dosages even. Like 300-400 mg per day. Apparently, with good outcomes. The SJS rash is very concerning and does cause one to pause significantly when considering med for child.Check skin daily when starting! However, key is to go low and slow on ramp up. I would even recommend slower than what docs prescribe. Lamictal tends to be one they either tolerate right away or do not. Know fairly quickly. We, too, saw improvements within days. Although, it was years ago, now. Great string of posts:) Thanks for info on other glutamate blockers!

Thanks! That is good advice. My son had Lyme titer by hospital lab that was negative. I believe they use Western Blot method. I have never fully understood or researched into the whole lab issue with Lyme's. I have always read that everyone recommends it be done with Igenex- what is the significance and validity with that particular lab method? He has never had big tick bite issues. Although, I have pulled a few off of him over his 11 years of life. We are not in a big Lyme prone area like the Northeast, although, it is not unheard of here. Thanks for any feedback!

THANK YOU, THANK YOU for all your replies for docs and tidbits of advice! I will be making some calls in the morning:) Will keep board posted once things get rolling.

Hello All, I have been reading forum since Feb, however, this is first time for intro posting. My DS10 is suspected PANDAS. I have entertained seeing Dr Trifilettti (as my first choice) but my read on him is he does not recommend IVIG unless the child is "institution" ready. DS10 is not. I have read that some other docs will consider IVIG if condition causes great disruption for child in academics, socialization and family life. I have 6 years of IEP's and neurological, psychoeducational reports to prove that. That, is DS dilemma. I have read that some docs are better than others at going to bat with the insurances.What I am looking for is knowledgeable PANDAS doc that will guide me the best way for my child's status. I am not opposed to long term antibiotics if that is option they think he can improve on....nor, am I opposed to IVIG if that is the only option for remission and recovery. Private pay or not- we will do what it takes provided that it is a viable option for improvement AND he would respond to just a few treatments. We could not afford repeated IVIG. As long as I can know the pros and cons to make an informed decision with knowledgeable PANDAS provider I can trust. I have tended to be conservative with my child's treatments- do no harm approach- however, after 7 years of symptoms- my husband and I are willing to be a bit more aggressive if it could mean a greater life and outcome for him. My son has been on high dose 500 mg of Azithro daily since March 1st. I live on the East Coast in NC and I am willing to travel from here to the Northeast, as far as NY. He is being treated by his Peds who took a "leap of faith" with me. We were waiting on Cam Kinase II testing but now that program has been shut down DS specimen will not be run. I'm not sure his peds will continue to treat without proof positive of a high Cam Kinase II testing so we need PANDAS doc willing to treat based on symptoms and history. DS has strong strep history- in Spring and Fall nearly yearly that coincide with his exacerbations over the years. He is scheduled to see Dr Larry Morton on June 6th- Neurology in Richmond,Va scheduled 6 months ago prior to PANDAS suspicion. Have no idea if Morton is a PANDAS supporter or naysayer. Our trusted Neuropsychologist recommended Andrew Zimmerman of the Kennedy Kreiger center. I have never seen him mentioned on PANDAS boards?? Anyone have any thoughts on him? I know it would likely take 6+ months to get appt with him and don't really want to wait that long if I don't have to and it would be a dead end road, anyway, if he is a naysayer. My concern is we are being left with the OCD behaviors, moreso, with each exacerbation although tics have improved significantly with long term, high dose Azithro and twice daily Motrin. Not sure what this means in the big picture. Some of his former motor/vocal tics have seemed to morph into his OCD behaviors.These behaviors seem more purposeful and not tissich in nature as it was before. Example- he makes a claw like motion and movements and watches his hand. His OCD behaviors are more compulsive than obsessive- if that makes sense. They change every week- none of it debilitating or pervasive but all of it odd. One week it is time, then handwashing, then smelling stuff, sensory issues (sensitivity to clothing, smells, sounds etc),same food preferences, walking on just certain sqaures in kitchen etc. Lastly, is there any suggestion that these children do well with immunologists or is a good PANDAS treating doc all they need? Thank you, in advance, for any feedback and advice you can give me!Sorry, so long! Sharon

All "reactive Lymphoid hyperplasia" means is there an overgrowth (hyperplasia) of the lympohid tissue (the tonsils) caused by inflammation (reactive)- likely from recurrent infections. I expect this is probably a very comman and expected finding for any child's tonsils and adenoids being removed for recurrent strep, tonsilittis or gross enlargement from allergies etc.. This is essentially a "benign" finding for pathology- exactly what one would expect. Hope this helps, Sharon