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We, like many of you probably, did an OT evaluation in the spring before we knew of PANDAS but were seeing school issues. (This was actually our 2nd OT eval as we did one when he was 3 & having issues in preschool--another reason I suspect early onset.) Our ds(6) didn't have any definite differences...just a few probables & usually like by 1 or a just a few points. Social/emotional was probably the biggest issue...shocker. I did have him in OT over the summer, but I still kinda thought that his issues were situational (school anxiety--was before PANDAS dx). I halted sessions last month while I investigated PANDAS. Now that I have the dx, I'm wondering if he even needs OT. His fine motor is good. He may be sensory seeking at times, but that's likely the PANDAS. They noted slight difference in his visual processing, but I read that the basal ganglia contols eye movement--so probably PANDAS, right? (Glad I didn't do the vision therapy exam because I'm sure we would have "needed" it.) Low frustration level...PANDAS. I know the social/emotional stuff is PANDAS. I halted everything because I didn't see a purpose in doing OT if we were dealing with brain issues, which we are. Does anyone out there feel OT serves a purpose with PANDAS? At least until you go thru treatment, I am not seeing the point. Maybe if you have residual issue or need to retrain the brain to forget certain learned patterns. But just if your kid has PANDAS, do you add OT? And I'm not saying anything bad about OT (think it's great!)...just not sure it serves a purpose if the issue is brain vs. true developmental. (And I get it that the brain stuff is kinda developmental, but you know what I mean. If they can't control it because their brain won't let them, then no amount of OT is gonna change that until the brain stops malfunctioning.)

 

Sorry if I seem snippy. Just haven't seen OT discussed here before & am not sure what I'm walking into with this question. I have best intentions...promise. (Plus my son threw up this morning, so woo hoo he likely has a virus or maybe residual effect of my dh having been around everyone who got flu shots at his office yesterday...dh did not get shot. At least he slept last night & will likely sleep all day since he's sick, which will mean probably no sleep tonight...circular.)

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Off your original subject, but do you think that virus he now has was simmering when you went back on the Zith and didn't see the improvements you had witnessed befroe? Soem kids with have an increase in PANDAS issues befrore the physical symptoms of the virus arrise.

 

About OT, my son never had OT so I don't really have info to add in on this. He was screened by an OT during exacerbation #1 but I answerered all questions based on pre-PANDAS behaviors so he didn't qualify for needing it.

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We, like many of you probably, did an OT evaluation in the spring before we knew of PANDAS but were seeing school issues. (This was actually our 2nd OT eval as we did one when he was 3 & having issues in preschool--another reason I suspect early onset.) Our ds(6) didn't have any definite differences...just a few probables & usually like by 1 or a just a few points. Social/emotional was probably the biggest issue...shocker. I did have him in OT over the summer, but I still kinda thought that his issues were situational (school anxiety--was before PANDAS dx). I halted sessions last month while I investigated PANDAS. Now that I have the dx, I'm wondering if he even needs OT. His fine motor is good. He may be sensory seeking at times, but that's likely the PANDAS. They noted slight difference in his visual processing, but I read that the basal ganglia contols eye movement--so probably PANDAS, right? (Glad I didn't do the vision therapy exam because I'm sure we would have "needed" it.) Low frustration level...PANDAS. I know the social/emotional stuff is PANDAS. I halted everything because I didn't see a purpose in doing OT if we were dealing with brain issues, which we are. Does anyone out there feel OT serves a purpose with PANDAS? At least until you go thru treatment, I am not seeing the point. Maybe if you have residual issue or need to retrain the brain to forget certain learned patterns. But just if your kid has PANDAS, do you add OT? And I'm not saying anything bad about OT (think it's great!)...just not sure it serves a purpose if the issue is brain vs. true developmental. (And I get it that the brain stuff is kinda developmental, but you know what I mean. If they can't control it because their brain won't let them, then no amount of OT is gonna change that until the brain stops malfunctioning.)

 

Sorry if I seem snippy. Just haven't seen OT discussed here before & am not sure what I'm walking into with this question. I have best intentions...promise. (Plus my son threw up this morning, so woo hoo he likely has a virus or maybe residual effect of my dh having been around everyone who got flu shots at his office yesterday...dh did not get shot. At least he slept last night & will likely sleep all day since he's sick, which will mean probably no sleep tonight...circular.)

Just my opinion, but I largely agree with you. My daughter has had gobs and gobs of therapy (OT, speech, ABA) over the years and most was largely ineffective. Additionally, I really think there is a danger of developing a sense of failure when the child is repeatedly asked to do things/practice things over and over again that they just are not capable of doing.

That being said- once PANDAS recovery has begun, I think therapy can do a lot to help a child catch up more quickly with the things they were unable to develop while ill.

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Vickie--could be right about the virus thing. So he went from strep to ear infection to a virus...poor thing. I think he has a sinus thing going on now too or maybe just allergies (and I'm leery about allergy meds). My dh & I are off our abx now, so we'll be picking stuff up & bringing it home (if I ever get to leave the house--must go to grocery store soon!). We were going to try to go to the ENT today, but now I just have an appt for next Fri.

 

We were about 2 months into his exacerbation from the Dec strep when we did the OT evaluation. Jesse does have some sensory issues (that we knew aboutauditory--was definite difference when he was 3 & now just 1 point into probable/more territory), but he had things mostly under control until this stuff hit. To me, some of it is how he's wired too, so you end up treating traits vs. symptoms. When he did OT before when he was little, he was only in for a few months because he was able to do everything fine & even then it was more to help with speech. No speech issues at all now. Now our ADHD questionnaire from the spring is interesting...no ADHD based on the previous 6 months. If I looked at him now & answered the questions, it would probably look like ADHD. I think it's important to get these issues taken care of early vs. letting them fester. I can point back to the ADHD questionnaire & say, he didn't have it 6 months ago, which helps prove the PANDAS case, IMO. If I'd not done anything back in the spring, and just went from this 2nd exacerbation from Sept strep, then I'd have a whole alphabet soup of dx's if I'd never found PANDAS...not that PANDAS isn't a bowlful. ;) So maybe these BIG exacerbations are really a "gift" to get us to take action because if they were mild, maybe we'd not see them as much (and pass it off as growth spurts like we used to do).

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Like others who posted before me, we have not done OT specifically - we got screened and he was within the normal range on everything - although he was below average on sensory, it wasn't in the range requiring services.

 

However, we are actively doing behavior therapy. That has been a challenge, because while my son isn't back to 100% from his initial exacerbation last year, he's at about 85% between exposures or infections. So we see some dramatic ups and downs - several great days in a row, followed by a rough day or two (but nothing compared to a full on assault!) So ther are days (like this morning) where he has an appointment with the therapist and he is a model child. It's frustrating - but I can tell you that the therapy has helped us in a few ways. It has helped us with the residual OCD, and it's given us and our son better tools to use, and help him self manage, the anxiety when it happens.

 

I hate that half the time I'm paying the therapist for nothing when he's doing well - but we have seen a difference. Our breakfast ritual (the only consistently lingering thing from the original exacerbation last year) was completely eliminated for a while - unfortunately it just ramped up again with a move to a new classroom - but we're using the same tools as the first time and it's working again.

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Yes, your son's immune system has been on high alert for awhile! As for allergies, those can be a nasty trigger especially if in mid exacerbation already. I experienced that big time. If he has allergies, it is important to get them under control. You can search 'allergies" and threads should pop up. Each med reacts different in each child. Just stay away from dyes too. I switched to a natural allergy supplement. D-Hist Jr and it works well. It also has anti-inflamatory properties in it. The only med I've read to specifically stay away from is Singulair. With my PANDAS child, Claritin made him super hyper and worsened OCD on day 11 of taking it. Benadryl has worked for him w/o making him tired or hyper (not the case for all kids). But I have now switched my recently turned 7 year old to the D-Hist and it works great too. My 9 year old has done well on it too.

 

Vickie--could be right about the virus thing. So he went from strep to ear infection to a virus...poor thing. I think he has a sinus thing going on now too or maybe just allergies (and I'm leery about allergy meds). My dh & I are off our abx now, so we'll be picking stuff up & bringing it home (if I ever get to leave the house--must go to grocery store soon!). We were going to try to go to the ENT today, but now I just have an appt for next Fri.

 

Edited by Vickie
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My son gets OT twice a week in 45 minute sessions. It has been very helpful for his large and small motor and visual motor delays. He also has propriosensory issues and the activities have helped with his sensory system and his balance. We have a very good OT privately who really works on specific skills and and he also gets it at school. Our OT works from a plan of care which really sets him up for success. They play alot of games and he really enjoys it. Dr. Murphy suggested OT or PT when we went to see her a few years back. I am glad she did. We are in the process of getting PT started for toe curling under and walking on them. This could be a sensory compulsion but it is damaging his toes and does increase after exposure to illness. He still struggles with tying shoes and doing buttons which is fine motor and handwriting on small spaces, however he is now riding a bike well! I think not all PANDAS kids have the motor delays but if they do it can be helped with OT. Someone on this board is a school OT and has given great advice on this topic before. I think it is Melanie. Hopefully she will comment here.

 

Now for behavioral therapy for my son, we have spent alot of time and money on this and seen little change. If they are in exacerbation they will not change anyways. We have found it more beneficial to do family counseling or therapy for the parents. It has been us who needed to make the changes to learn how to better deal with his behaviors. Social skills are important though for the kids. Our psychologist does a social skills group and my son has enjoyed it very much making friends and he works on social goals.

Edited by michele
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Hi - OTs do have a great deal to offer kids with PANDAS, but it is not the same as treating a child with primary sensory processing disorder. When SPD is the primary problem, the OT provides direct treatment and a "sensory diet" for the child to follow throughout the day and the child usually makes progress .... and retains the gains he or she makes. When the child has PANDAS, the OT may think the child is making gains because the exacerbation is diminishing... only to have the child backslide again with another exacerbation. If PANDAS has not been identified, the OT would probably be left wondering what happened.

 

OTs work with children with all kinds of diagnoses, and we work to make the child more functional in their daily "occupations". I've worked with kids with all kinds of neurological problems that I did not "fix"... like brain tumors and head injuries, and brain infections. I use direct treatment to help the brain and muscles to function better when the diagnosis allows for that - and I modify the environment or the task to make kids more functional when I can't change their body.

 

I know I struggled with the role of OT with my own child. It took several years for me to correlate the sensory defensiveness with his sinus infections. His handwriting is easily the worst in the class and gets even worse when he has an exacerbation. I've had several OTs work with my son through the years, and some of the sensory techniques have gotten us through dinner, bathing, and waiting in the doctor office during exacerbations!

 

Some things that OTs can off DURING an exacerbation are:

 

1. Sensory strategies to help override the sensory defensiveness so your child can get through daily living tasks.

 

2. Environmental modification - to alter the environment and reduce triggers for meltdowns and flareups.

 

3. Adaptive devices to help handwriting - like paper with raised lines, slant boards, pencil grips, and templates with vertical lines to help with spacing

 

4. Consult with teachers for classroom modifications.

 

 

Some things that OTs can help with AFTER the exacerbation is over are:

 

1. Conduct a thorough evaluation to determine if your child is functioning at age level in daily living skills and school functions. Also evaluate for underlying problems in sensory, perceptual, fine motor, gross motor, motor planning, and handwriting.

 

2. Provide direct treatment during remission to remediate any continued problems.

 

I hope that is helpful. Let me know if you have more questions.

Edited by kimballot
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We did years of OT, before we knew that my DS14 had PANDAS. I have to say, it did help him alot at the time. It helped him to manage his focus on handwriting and spacial awareness whether or not he was having an exacerbation. We did a bunch of different kinds of OT, in the therapy room, something called "outdoor sensory adventures" that was amazing, plus we blended OT with PT on horses and did that for 2 years. DS has problems with coordination both large and small motor skills, gait and balance are off and he struggles with a trunk ataxia, sensory problems plus tics OCD and intrusive thoughts. I can't say how much of it stuck or didn't stick, but i can say it made his life incredibly better and integrated his care throughout. I can't even picture what would have happened had he not had that support.

 

However, had we known the true diagnosis, maybe we would have done less at the time and focused on the cure. Of course at that point had we been lucky enough to know he had PANDAS we would have still had plenty of resources left to pay for IVIG and be talking about this so not in retrospect.

 

All of that said, OT really helped alot, alot.

 

And i must add a great ps to this, as we have not yet done ivig, but last year when we discovered that my son had big time celiac that was missed on a prior blood test (blood testing for celiac is so innacurate), and we went gluten free, a huge layer of symptoms diminished and completely changed his symptom baseline including all this coordination stuff and even his tics. I think there is so much inflammation involved in celiac it adds to the already inflammatory stuff from the PANDAS.

 

sorry if this got rambly.

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We did some OT (which our insurance fussed about covering) for our dd in 3rd grade for her margin drift (and also handwriting). To be honest, we didn't do too much of the OT (only 4-5 visits)...since we had enough other things going on. Actually, the OT with our medical group suggested we pursue OT through the school. But then she didn't qualify for OT in school. :blink:

 

However, after IVIG (just b-4 4th grade), the margin drift fixed itself (yay IVIG!).

 

She was on abs the whole time.

 

So, I would say treat the PANDAS first (for us that meant IVIG, not just abs) and see where you are. Then you can pursue OT if still needed.

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Vickie,

 

Can you tell me the bad side effects from Singulair? Dr. B. wants my kids to start it after IVIg. I remember a friend last year (before I knew about PANDAS and b/f my kids were infected) talking about how it made her kid hyper. Now I am 2nd guessing it. Ugh. :wacko:

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I have always been a big fan of attacking what you have in front of you - in a positive way - with every tool you can get your hands on. There are kids here that have a quick cure with abx or IVIG - and you can then quickly drop the OT or ERP if you wish. But there are others that continue to suffer with co-infections, underlying immune issues, etc. They may take months or years to heal. In the meantime, having every tool possible to make their lives as joyful and carefree as possible, was always our approach. And many of the tools are slow to learn and implement - many of the doctors and therapists have months of waiting lists. We did not approach OT or ERP in ways that made our child feel discouraged - when we found this happening, we quickly changed to a new team member or a new approach that could be more productive with our situation.

 

I know we suffered for a long time without medical intervention. That, sadly, gave us a lot of time to practice tools that were just that - tools to help - not cures or even long term remission. Medical comes first - but if time and energy allows - doing both at the same time can be helpful. I greatly admire (and envy!) the parents here who find help quickly. But if you are a few months into a medical solution and have not yet had success - or if you are still having exacerbation after exacerbation - or if you are only at 85% and want to work on the last 15% from all directions - then I cannot more highly recommend OT and/or ERP depending on your issues. Even if you are just starting this journey with your child today - given the waiting lists, I'd call & get on the list. It's easy to cancel, not so easy to get the appt when you need it.

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It might be more helpful to say ways that OT helped us along the way - so here are some examples:

 

In an exacerbation, our dd could not sit still - at all. Once we understood the issues, we had back up from the OT when explaining that our dd should be allowed to do any moving around tasks in the classroom (handing out papers or snack, putting up chairs, sweeping, etc so that she would have less time to sit still. That she could stand at her desk when writing & even travel around it, that she could sit on a cushion that would allow her to move all the time, that she would not be chastised for sitting on her feet or even sitting on the floor.

 

Handwriting - we learned some techniques to strengthen her hands, as it was painful to write, got a special grip to help her hold a pencil, learned to use graph paper for both math & writing so she could better see the margin, got permission not to have to spell correctly on papers, and to take oral spelling tests.

 

Sensory - learned about "squashing" to help prevent or calm rage or panic, learned about her need to spin and swing, learned to give her a structured "sensory diet" of swinging & spinning so that her body stayed in a fairly good place & did not get even more out of control.

 

Dressing - learned tools for habituation to help her get dressed more happily in the am.

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We started the OT for sensory processing disorder in June of this year, before we knew or suspected PANDAS. My son has turned into a sensory seeker. He's hyper now and has a hard time sitting still. It has helped. He has "exercises" was use daily at home, before and after school and he has been taught things he can do in his seat when he feels he's getting wiggly. Our insurance is paying for it. The OT coded it as some sort of developmental problem.

 

Cindy

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