michele

Dr. Jan Kriwinsky Beechwood, Ohio. http://www.pediatricplace.net/

What are you all doing for attention and impulse for PANDAS kids? My son is on Intuniv 3 mg a day but still is acting impulsive and his attention and short term processing is slow. I just wish there was a better med to try but all stimulants made him manic and he has severe ADHD. If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth. We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor? I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow. We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin). Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect). He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery. For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby! So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!

Lately several leading Dr's and several PANDAS parents are reporting their Dr's and psychiatrists and neurologists are seeing a correlation between PANDAS after strep and a reaction in the body called Conversion Disorder where the mind plays games on them and they are not able to walk or they may loose muscle control or stop eating or can't stop bark. it causes the brain to take over and make your body have compulsions and can even make you think you are blind and can't walk..and so on..it's real to the person but there is nothing really wrong with their body..it is a mental thing. It goes along with PANDAS..and a lot of Parents do not know this..and more and more children are having it..do some research on it..help spread the word on this because these kids that we think have just tics and OCD and compulsions are having this too..and it can be helped and finding the key to helping them is getting to know what is going on with them and letting them know this is ok and real and they can help control this.. Kids are not able to walk because of this and PT can help a lot with it..they loose so much muscle control..Please check it out..might help you are someone else you know.See More If anyone has access to this article I think it would be very helpful to see the connection of PANDAS and Conversion. What is Conversion Disorder and How Can You Cope? - Associated Content from Yahoo! - associatedcontent www.associatedcontent.com Conversion disorder unfortunately affects children all over the world. It is defined as a type of conditions that has altered or complete loss of physical function. Prospective identification and treatment of children with pediatric autoimmune ...... PANDAS and paroxysms: a case of conversion disorder? J Child Adolesc Psychopharmacol. 2008 Feb;18(1):109-15. Kuluva J, Hirsch S, Coffey B. NYU Child Study Center, New York, NY 10016, USA. coffeb01@med.nyu.edu PMID: 18294094 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/pubmed/18294094?dopt=Abstract http://www.medhelp.org/posts/Child-Behavior/Conversion-disorder/show/463076 Conversion and PANDAS in medhelp

My son was on Omnicef 250 mg x 2 day for about three years. He did get some bowel issues but it could have been related to Strattera he was on too. It was not C Dif but he had a lot of trouble with pooping and smearing it on things and encopresis so we stopped both the Omnicef and Strattera. He did have a bad episode over the summer with hand foot and mouth and OCD symptoms returned and tics because his ASO was high. The ped put him on Amox clav for 12 days 800 mg daily. Then he went on Pen vk 250 x twice a day. He is still having issues and I would love to try azith to try to get rid of the risidual symptoms. We have never had any luck getting azith longterm. Why were you changing from azith? It does seem everyone has had different luck with different antibiotics. Just like no two PANDAS kids are the same, they don't have the same reaction to treatment. Too bad it isn't one treatment fits all though! It would make life easier. name='airial95' timestamp='1290437719' post='93341'] We weren't on Augmentin to start, we were on Azith, full dose for 3 1/2 months or so followed by half dose for another 5 or so. While on the half dose, we got strep 2x. Both of those infections we switched to Omnicef (and a shot of Rocefin) and his PANDAS symptoms cleared back to "baseline" fairly quickly (we wern't 100% at the time of reinfection). We switched full time to Omnicef about 2 months ago or so on Dr. Murphy's recommendation. We're still seeing improvement, (we've been hanging around at about 85% or so, with some blips from exposures here and there), but it's different than on the azith. With the azith, we would have stretches of time (a few days all the way to almost 2 weeks!) almost symptom free (his breakfast ritual would always linger), but when he had a small outburst - it lasted for DAYS before we got back to where we started. With the Omnicef, we're not having those long stretches anymore. We're having outbursts avery day/every other day or so, but they're "manageable". If he has an issue in the morning at breakfast, we can bring him out of it, and then he's fine the rest of the day. On the Azith, if he had an issue with his breakfast ritual in the morning, his OCD anxiety and tics were on high for a few days. I sort of miss the stretches of calm, but this new pattern has allowed us to really work on what he's learning in therapy better. Bottom line, if you see results you like with the Omnicef - consider keeping him on it. And I wouldn't be scared of switching it up, most folks on here had to try several with some/limited results until they found what worked for their childs needs.

Be careful. Our district doesn't believe in PANDAS by the way they have treated me in the IEP. They are threatening me over his diagnoses being too many and what is next since he has everything under the sun? I am worried. If you know too much they will acuse you munchausen by proxy.

Mediation bothers me because the school has their attorneys and you can sign away your due process rights with language you can't understand and get nothing in return. Have you done mediation and seen it work? Have you heard of facilitated IEP meetings? I am going to look for a ed lawyer that works on a sliding scale. I think we have thrown too many diagnoses his way in the IEP. I know too much about the disibilities and he has seen too many Dr's. I just wonder where the superintendent will go next. I've been accused of MBP by doctors- well not formally accused- but its been talked about between specialists and our pediatrician. But, for IEP's it doesn't really matter what the dx's are- they should be based completely on the needs of the student, regardless of the dx. I'd go to mediation. Its completely unprofessional of any school personelle to "go off on you." Get documentation of your child's needs and get services/accommodations to meet those needs. You might procure the services of an advocate, who knows the ins and outs of SPED and the IEP process to help you get what you need.

Mediation bothers me because the school has their attorneys and you can sign away your due process rights with language you can't understand and get nothing in return. Have you done mediation and seen it work? Have you heard of facilitated IEP meetings? I am going to look for a ed lawyer that works on a sliding scale. I think we have thrown too many diagnoses his way in the IEP. I know too much about the disibilities and he has seen too many Dr's. I just wonder where the superintendent will go next. I've been accused of MBP by doctors- well not formally accused- but its been talked about between specialists and our pediatrician. But, for IEP's it doesn't really matter what the dx's are- they should be based completely on the needs of the student, regardless of the dx. I'd go to mediation. Its completely unprofessional of any school personelle to "go off on you." Get documentation of your child's needs and get services/accommodations to meet those needs. You might procure the services of an advocate, who knows the ins and outs of SPED and the IEP process to help you get what you need.

Our district spec ed director went off on me in the IEP meeting and was shouting off all my son's diagnoses and said what will it be next, he has everything under the sun. Has everyone been accused of munchausen by proxy? I feel this is what he is accusing me of? Does anyone know what the freedom of information act regarding munchausen by proxy is? I feel I have given them all his diagnoses and Aspergers was after the PANDAS and Tourettes w ADHD. Now they think I am asking for too many services? They say they don't see a need for the help. He has an IEP but it has many loopholes in it. I brought them up in the meeting and he didn't like it. He was verbally abusive and agressive with me coming across the table with his hands flying in the air. He said we can go to mediation. What can I do?

Has anyone ever tried this program http://www.learningrx.com/akron-bath/success-stories.htm'>http://www.learningrx.com/akron-bath/success-stories.htm to help with school learning? http://www.learningrx.com/doctors-only/7-the-autism-spectrum.pdf'>http://www.learningrx.com/doctors-only/7-the-autism-spectrum.pdf http://www.learningrx.com/ It is supposed to help ADHD, and spectrum disorders to learn and process material better. Also I have heard this week of a program called Brain Balance http://www.brainbalancecenters.com/. A mom traveled to Georgia from OH for the summer to do theBrain Balance program with their son. We really are struggling with attention issues at school and visual and proprioceptial delays. Does anyone have any ideas for techniques that have helped in the reg ed room? My 8 yr old PANDAS/ADHD son needs supports to keep him on task. He can do the work in a small ratio setting like with his tutor but in the whole group he is not doing well. I want to get him more help on his IEP so he can be successful in the classroom. He is already in OT and PT and tutoring. Thanks in advance for ideas. Michele

My son is now 8 but had his first strep PANDAS epsiode at age one year and one month. Now that was in 2003 and Dr's suspected PANDAS but did not know what to do other then give antibiotics to clear the infection. his titers were elevated but his EEG and CAT was normal. He had blinking, finger chorea,irritability, not eating, not sleeping, hyperness. As he continued to get sick his symptoms kept returning and lasting for about 5 weeks post infection. He seemed developmentally on time. Then at age 4 we gave more immunizations and a flu shot and he became like aspergers and adhd full time. The OCD came on over urination, touching, licking, chewing clothing, tics andtantrums. The ADHD didn't go away anymore like in the past. His fine and gross motor skills became delayed. At 5 he had to be put on meds for severe adhd at school. He still had tantrums regularly so he was put on abilify. The OCD and tics would wax and wane. The behaviors stayed. Fast forward, he is still having tics and ocd with exposure to strep. He takes a daily pen VK 250 x 2 day, and risperdal, intuniv and prozac. His ADHD interferes with school and home life. His rage is better on the risperdal. Motor skills are all still delayed so he gets OT and PT. We get him social skills help at school and privately. During exacerbations we take stronger antibiotics for two weeks like 1000 mg of Augmentin daily. Luckily he is a happy well liked kid. He really is dev delayed in maturity though.

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf If you PM me I have alot of info on IEP. We have had PANDAS since before he started school on an IEP in kindergarten. I can give you some tips. Ours is under OHI. He gets Math and Language arts with the tutor 3-5 days a week for up to 50 min a day. Lots of accomodations like extended time, not counting for handwriting, testing in small group, OT help, social skills help, preferred seating, work breaks, organization, daily journal between school and home. I could pull it out there are more. It has been a work in progress for four years. Every year it gets better. Just get things in writing. Their word doesn't hold up. Don't sign anything unless you agree completely. You can give PWN if you don't agree with the terms of the IEP/MFE. Because of his ADHD he really needs extra assistance for school work. We may be getting an aide next since he is not doing well academically with his IEP right now. Also we are in the process of getting an IEE done and a FBA. Remember they are entitled under IDEA to FAPE in the least restrictive envvironment and a specially designed instruction. Michele

My son has visual perceptial motor delays. He tests several year behind age level in the Berry VMI testing. We do Visual motor training exercises in OT and at home. He also wear glasses because of eye strengthing not for vision. One eye is stronger then the other and the glasses help to strengthen it. His vision tests good. His use of lines and spacing have always been a challenge. He sizes letters differently. Maybe this is part propriosensory. Word searches, hidden pictures, copying shapes, geoboards with rubberbands, have helped. He does something called Brain Gym. These are activities to wake up parts of the brain. http://www.braingym.org/ His visual issues became apparent about five years into the PANDAS. One problem is when he gets raged he loves to throw his glasses. He broke one pair in half. From day one he used the glasses on the ground when he got mad. He knew he could upset me! At $150 a pair yes I get upset and I can't hide it.

Yes my son had his first episode at age one with tics and chorea but then went on to develop on time with talking and walking. However after shots at age 3 he started to regress and developed ADHD and impulse issues. Then he started having compulsions and tantrums that looked autistic when we did not go along with him. So yes I would say with each exacerbation his symptoms have gotten worse and his baseline has gotten back to a little less then typical. He now on a daily basis has motor delays, propriosensory issues and ADHD along with moods. When he is in exacerbation he is worse and more compulsions and tics and anxiety, however on a daily basis he still has small tics and attention trouble and moods. He could be considered aspergers but it is very slight and getting a diagnosis has been difficult on some tests like the ADOS. Some social delays but he is friendly and outgoing. It is his feelings that are easily hurt and sensitive and he overreacts. I have him in social skills group and OT weekly and therapy. I think he is improving but we are using meds for the meltdowns and ADHD and compulsions. Still the meltdowns do occasionally come through as he did last week when he refused to go to school when I wouldn't give him money for a bookfair. He is on an IEP for OHI and I work very closely with the school with his learning delays. A psychiatrist did diagnose him with aspergers and tourettes and adhd and ocd and pandas. It helps for school purposes to have them in writing.