so sad - feel like i lost a partner today

[smartyjones]

last year, i was so digusted and dismayed with the general psychological profession. it was a behavioral therapist who diagnosed my son - to whom, i'll forever be grateful but she didn't have much to offer in the way of coping skills. we had a few other useless consults and a useless 4 months with a psychologist. finally, we had found a psychiatrist i felt really got it. she's treated other pandas patients and knows the medical side needs to be addressed first. she's given us some helpful ideas as far as coping.

 

we had a scheduled appt today. we talked about an incident last week at school that has caused school anxiety. in retrospect, there could have been so many ways to handle it differently - i shouldn't have allowed the teacher to try what she did. he's generally doing well - has friends, etc but leaves school at 3 pm b/c he can't stay til 3:15 and leave with the others and still is not eating lunch at school. he may have a big incident of cognitive inflexibiilty not so often as once a month.the psych's concern is that if he's not doing things with his age-level peers, there's so much chance for further isolation and the gap only increases as time passes. added that he is advanced academically but behind socially/emotionally. she's just worried about the gap widening. i agree a valid concern. she suggested to try SSRI. she said she's treated pandas patients successfully with SSRI and seemed surprised when i raised concerns.

 

she didn't seem aware that many pandas kids have serious troubles with SSRIs. while i appreciate her concern and agree, i also feel it's a bit mild in light of what we could be facing. now, i'm not sure she really gets the full impact and potential of pandas.

 

the real knife to the heart came when we were discussing his recent IEP eval by the county i had just shown her. she had his file open on her desk and drew my attention to something in the eval. i saw on her desk that *%$#* blue NIH symbol of the NIH fact sheet as part of his file. now i feel she really just doesn't get it.

 

a few months ago, we had a terrible conference with his teacher where she pretty much just purged what a colassel pain in the a** she thinks he is. previously, she'd been so supportive and helpful. now, he's doing okay in school but we're just really 'white-knuckling it' to get to the end of the year.

 

tomorrow, we have an appt with our new dr that has diagnosed him with lyme and toxoplasma gondii infection and is the one i feel is the most on board with helping him. so i'm hopeful i won't feel so alone after that.

 

it's crazy how i feel like the lone mom in the desert just trying to get my son well.

[peglem]

Here's a paper you can show the psychiatrist on use of SSRIs in PANDAS:

http://mbldownloads.com/0806PP_Murphy.pdf

 

If you feel she's still open to learning, you can find informative papers here to help her catch up on the research.

http://www.latitudes.org/forums/index.php?showtopic=6265

 

I think (unfortunately) its natural for docs to go to the NIMH page for PANDAS info because they are supposed to be the authorities and they were the ones who funded those initial studies. But, the fact that she went looking for information may be a very good sign that she is willing to learn what to do to help your child.

 

I know how lonely this can get and trying to get support from doctors is very demoralizing. But, if you have one who is interested, especially a psychiatrist, (because they likely have other PANDAS patients that don't know it yet) you may be able to provide them with information that will not only help your child, but several others as well- and that can feel pretty good!

 

Sorry the teacher doesn't get it...I think in many ways that's a more difficult situation. W/ docs, at least you can keep looking for someone who knows better or is willing to learn. But you're pretty much stuck with whatever teacher you get...and how sad that your child, who is already struggling with this disorder has to go face that everyday. I'm sorry.

[thereishope]

T gondii has a PITAND connection to bipolar and schizophrenia so I can see it causing all the PANDAS symptoms too (OCD, tics, etc). Then he has Lyme too! Your son needs a break!

 

Is the IEP complete?

[saidie10]

this is sad and frustrating...i am so sorry . i hope this new doctor will be the light at the end of the tunnel for you guys.

 

last year, i was so digusted and dismayed with the general psychological profession. it was a behavioral therapist who diagnosed my son - to whom, i'll forever be grateful but she didn't have much to offer in the way of coping skills. we had a few other useless consults and a useless 4 months with a psychologist. finally, we had found a psychiatrist i felt really got it. she's treated other pandas patients and knows the medical side needs to be addressed first. she's given us some helpful ideas as far as coping.

 

we had a scheduled appt today. we talked about an incident last week at school that has caused school anxiety. in retrospect, there could have been so many ways to handle it differently - i shouldn't have allowed the teacher to try what she did. he's generally doing well - has friends, etc but leaves school at 3 pm b/c he can't stay til 3:15 and leave with the others and still is not eating lunch at school. he may have a big incident of cognitive inflexibiilty not so often as once a month.the psych's concern is that if he's not doing things with his age-level peers, there's so much chance for further isolation and the gap only increases as time passes. added that he is advanced academically but behind socially/emotionally. she's just worried about the gap widening. i agree a valid concern. she suggested to try SSRI. she said she's treated pandas patients successfully with SSRI and seemed surprised when i raised concerns.

 

she didn't seem aware that many pandas kids have serious troubles with SSRIs. while i appreciate her concern and agree, i also feel it's a bit mild in light of what we could be facing. now, i'm not sure she really gets the full impact and potential of pandas.

 

the real knife to the heart came when we were discussing his recent IEP eval by the county i had just shown her. she had his file open on her desk and drew my attention to something in the eval. i saw on her desk that *%$#* blue NIH symbol of the NIH fact sheet as part of his file. now i feel she really just doesn't get it.

 

a few months ago, we had a terrible conference with his teacher where she pretty much just purged what a colassel pain in the a** she thinks he is. previously, she'd been so supportive and helpful. now, he's doing okay in school but we're just really 'white-knuckling it' to get to the end of the year.

 

tomorrow, we have an appt with our new dr that has diagnosed him with lyme and toxoplasma gondii infection and is the one i feel is the most on board with helping him. so i'm hopeful i won't feel so alone after that.

 

it's crazy how i feel like the lone mom in the desert just trying to get my son well.

[Fixit]

i know this dosen't help...and i didn't get to read the other replies completely...

but i also wonder if her hands are tied....

there are politics everywhere....and though originally she may have been gung ho.....maybe after consulting with peirs or the practice...she may have gotten some pressure...and if things are going better then with a lighter heart she can let you go a little and cover herself...

and there the loosing the liscense and liablitily....

look at the video from BEWELL i think ...where the lymes guy had his liscense suspended or taken away...

 

(&%))__))*TR$#$%()_)(^^%%$&( Stinken )(*$%&(_)_)&$#@@$%& ............ it may not be all her fault

 

you need to forward the link on the 1918 paper and someone mentioned how things changed once Frued(go figure) seperated the mind from the rest of the body..

[Megs_Mom]

Hey Smarty - wish I didn't know exactly how you feel, but I do. It's so hard when you want so badly to have a partner in this fight, and then you find that they are not 100% there with you. We are somewhat resigned to needing a team, and not expecting 100% from any one particular person or discipline. Wish it were not this way - but YOU are the 100%. You have to take what you need from each person, and combine it with others, and decide in the best way possible, what to reject.

 

Now to have Lyme as well?!? You are doing a wonderful job of figuring out each step for your son. Try not to let the setbacks get you down.

 

You're doing great - we'll be your partner in the battle!

[MomWithOCDSon]

So sorry about the struggles just to be understood! It is SO frustrating, and the people you're trying to get through to really do not understand the extent of their ignorance, which makes it even harder. They pull that NIMH factsheet and they think, "Okay, I did my homework. This is from THE authority." And so, by comparison, they think that we moms are "out there" on some other planet when we talk about our kids and their treatments and their needs; they think we're grasping at straws, trying to explain away our kids' troubles, rather than dealing with them. If karma is real, each of these people will wind up with a similar, irrascible challenge on their own hands, and have trouble gaining understanding and accommodation from the rest of us because they're "merely espousing a theory" and there's nothing in the popular literature to support their positions!

 

I need to ask, though, how is your DS through all this? He's leaving school ahead of the main population, and he's not eating lunch at school? Because he's too anxious for that? Does he WANT to conquer those milestones, but he's afraid to try? Or he doesn't see the need? Is he a stressball by the end of the school day? Our DS is in much the same place. He's in school a full day, but we drop him off early and he has a pass for early entry so that he can get to his locker and get organized for his day before the other kids start storming through the halls, and he still doesn't attend gym class at all. He stays for lunch, but he brown bags it every day, will only sit at a certain table with a certain other boy, etc.

 

Yes, the Murphy article and research identifies problems with activation with SSRI's in children with PANDAS. Yes, psych meds are probably not a great answer for kids, especially long term. So all of this should be carefully considered and approached very cautiously. But if your son is struggling and unhappy with his social situation at school, then that's up for consideration, also, isn't it? IF . . . please note the capital letters . . . an SSRI would ease his anxiety and make him feel more comfortable in his own skin during the school day and other social settings while the PANDAS treatments are in the works, then is it entirely off the table? Please note that, despite the headline of the Murphy article, she does conclude that SSRIs can be beneficial, even in PANDAS kids for whom they have caused activation; her main caution is that they need to be given in very low and controlled doses, with careful observation of their effects on each particular child.

 

I'm not necessarily advocating for SSRI's, but I am suggesting that you not toss the "baby out with the bathwater," either. Your son has PANDAS, and he's being treated for that underlying auto-immune condition, yes? But you're trying to help him live his best life even during that healing and recovery, so anything that can contribute to that without long-lasting negative impact is something to examine, yes? If you do decide to try . . . again, accepting only a very low and controlled dose . . . you may find that your experience is like ours: no negative effects (or activation), but no noticable positive ones, either.

 

But at least you will have tried everything at your disposal . . . . just my 2 cents worth.

[EAMom]

Our dd is on 10mg prozac daily (in addition to the azith and advil). Originally, we were on Lexapro (which was NOT good). I think the Prozac is good for her, at least for now. We did try to take her off in the fall...got some major bad moods, so put her back on. I don't know if it was that she was extrodinarily sensitive to the ssri withdrawal (prozac is supposed to be an easy one to wean), or what.

 

A while back, I did find some articles about prozac being anti-inflammatory (which could be a good thing for a PANDAS kid). Here's one http://www.sciencedaily.com/releases/2010/...00225082441.htm with respect to Rhuematoid Arthritis. Here's one in regards to asthma http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1876225/

 

We also wonder if our dd has an underlying social anxiety (in addition to PANDAS), so maybe the ssri helps with that.

 

So, I agree with MOMwithOCDson

I'm not necessarily advocating for SSRI's, but I am suggesting that you not toss the "baby out with the bathwater," either. Your son has PANDAS, and he's being treated for that underlying auto-immune condition, yes? But you're trying to help him live his best life even during that healing and recovery, so anything that can contribute to that without long-lasting negative impact is something to examine, yes? If you do decide to try . . . again, accepting only a very low and controlled dose . . . you may find that your experience is like ours: no negative effects (or activation), but no noticable positive ones, either.

 

But, if you do use SSRI's, keep your doses low, and proceed with caution. I would also tend to prefer Prozac over some of the other SSRI's...there is more of a track record of it being used with kids, and it is self weaning (so you don't have terrible withdrawal symptoms if you want to take them off--we had that problem with Lexapro.)

Edited May 11, 2010 by EAMom

[smartyjones]

thank you all so much for your thoughts and support. it is so very helpful to have you b/c there is so much that is isolative about this. thanks for the thoughts about positives of ssri, also. do we have a thread on that? or advice on how to tease out what is pandas and what is not? the million dollar question, right?

 

yes, meg's mom -- truer words have never been spoken "YOU are the 100%. You have to take what you need from each person, and combine it with others, and decide in the best way possible, what to reject."

she has been helpful and even in this discussion was so. i was just surprised she didn't seem to be aware there can be negative effects with pandas. and then it was only a few minutes later i saw the NIMH paper. she did suggest as momocd and eamom, that it's important for low dose and careful observation.

 

please, thoughts on this. Because he's too anxious for that? Does he WANT to conquer those milestones, but he's afraid to try? Or he doesn't see the need? Is he a stressball by the end of the school day?

the things that are problematic for him, are that he is not doing something expected by others (albeit, important in 'normal' functioning - such as eating lunch). he is not concerned, stressed or desiring to do them. it's as if he makes choices just like playing ball at recess vs. playing on the jungle gym. eat lunch with the kids or read on the couch. i'd like to read on the couch. yes, it would be good to be doing what everyone else is and he does need nutrition during the day, but he is not concerned. he states that he doesn't want to eat lunch b/c it's not what he started the year doing. if pushed to eat or like last week, to go out with the kids at normal dismissal, it's a big problem. i think we could conquer this with incremental steps, but this school can't do that -- perhaps next year when he's in a different school with more resources for such.

 

he has no desire to leave with the other kids. he likes that someone alerts him i'm there and it's time for him to go. it's not as strange as being pulled out of class b/c they have mixed-ages in the class and 1/2 the class leaves at 11:30. he left before lunch until dec and we started phasing him in. the school didn't want to do it my way with concrete steps b/c they don't really get it. they thought once he was there and saw how fun it was, he'd join in. i knew he'd need full steps just like you treat a phobia. now we're almost to the end and everyone thinks it's easier for all to just leave it. i agree b/c i don't think they have the proper mindset to help -- they're tired of him and just want him to be like everyone else.

 

i do see there could be underlying ocd that manifests this way. however, we've gotten him over other humps with systematic desensitization without thoughts and issues surfacing. it's more like he's an intense creature of habit that needs slow changing of habit.

 

what are your thoughts about that he is not stressed, worried or concerned? i do believe it's important to learn flexibility b/c things happen that can't always be controlled but i also think he's not medically well and it's okay to cut him a break. i do see pretty clear cut patterns of flexibility when he's healthier and rigidity when he's in a downspiral when exposed to something.

 

these two of lunch and leaving are big b/c they're entrenched but i don't feel we've got the proper support system in the current school.

 

our dr visit yesterday was good. the dr feels he's making progress in fighting the infections. i'm thinking we continue to cut him a break and when he's more in the clear medically, we push. but of course, is this too soft and we could be helping him more?

[MomWithOCDSon]

please, thoughts on this. Because he's too anxious for that? Does he WANT to conquer those milestones, but he's afraid to try? Or he doesn't see the need? Is he a stressball by the end of the school day?

the things that are problematic for him, are that he is not doing something expected by others (albeit, important in 'normal' functioning - such as eating lunch). he is not concerned, stressed or desiring to do them. it's as if he makes choices just like playing ball at recess vs. playing on the jungle gym. eat lunch with the kids or read on the couch. i'd like to read on the couch. yes, it would be good to be doing what everyone else is and he does need nutrition during the day, but he is not concerned. he states that he doesn't want to eat lunch b/c it's not what he started the year doing. if pushed to eat or like last week, to go out with the kids at normal dismissal, it's a big problem. i think we could conquer this with incremental steps, but this school can't do that -- perhaps next year when he's in a different school with more resources for such.

 

he has no desire to leave with the other kids. he likes that someone alerts him i'm there and it's time for him to go. it's not as strange as being pulled out of class b/c they have mixed-ages in the class and 1/2 the class leaves at 11:30. he left before lunch until dec and we started phasing him in. the school didn't want to do it my way with concrete steps b/c they don't really get it. they thought once he was there and saw how fun it was, he'd join in. i knew he'd need full steps just like you treat a phobia. now we're almost to the end and everyone thinks it's easier for all to just leave it. i agree b/c i don't think they have the proper mindset to help -- they're tired of him and just want him to be like everyone else.

 

i do see there could be underlying ocd that manifests this way. however, we've gotten him over other humps with systematic desensitization without thoughts and issues surfacing. it's more like he's an intense creature of habit that needs slow changing of habit.

 

what are your thoughts about that he is not stressed, worried or concerned? i do believe it's important to learn flexibility b/c things happen that can't always be controlled but i also think he's not medically well and it's okay to cut him a break. i do see pretty clear cut patterns of flexibility when he's healthier and rigidity when he's in a downspiral when exposed to something.

 

these two of lunch and leaving are big b/c they're entrenched but i don't feel we've got the proper support system in the current school.

 

our dr visit yesterday was good. the dr feels he's making progress in fighting the infections. i'm thinking we continue to cut him a break and when he's more in the clear medically, we push. but of course, is this too soft and we could be helping him more?

I know what you mean about greater levels of flexibility when healthier, with that diminishing during exacerbation or a waxing of the behaviors; we have that too, in spades. And then, honestly, I think we have to pick our battles because it just isn't realistic to try and fight them all at once!

 

So, he's not visibly worried, stressed or concerned? Well, as long as that's to his core the truth for him, then I think he gets kudos for knowing who he is, what matters to him, and what is worth compromising on for the purposes of "fitting in" and what isn't. For the most part, our DS was very much the same . . . up until this year, that is. He was always content to keep his own company on the playground at recess if the other kids were playing ball because he didn't like to play ball, and just surrenduring to playing it in order to be with the other kids wasn't worth it to him. He didn't mind being seen as "different" by his peers, and he willfully participated in self-isolation. He kept to only a couple of good friends, but he didn't even care too much what they thought much of the time; he marched to his own drummer.

 

But at some point in this last school year (he's 13, 7th grade), there's been a shift. Now it bothers him that he's viewed as a bit "odd" among his peers. Now he notices . . . and dislikes it . . . when his behaviors draw attention from his classmates. Now he WANTS to fit in more than he ever did before. And my heart breaks for him because it's hard, and because if he could continue with his original "I don't care what they think" attitude, then his feelings wouldn't get hurt as often. And he wouldn't come home from school extra-stressed because some incident during the day drew him some unwanted attention, or a classmate to whom he's grown attached didn't decide he'd rather eat lunch today with another boy rather than with DS.

 

So, that would be my only concern for your son . . . that his lack of concern won't last forever, and that if he continues indulging in self-isolating activities for too long, it'll be all that much harder for him to find his way into "fitting in" later, and learning to be resilient to the inevitable snubs, acts of thoughtlessness, etc. that are part and parcel of growing up. Then it may be that he will come home stressed because he's discovered now that he does care, that it does matter to him.

 

I also agree with you that now -- the end of the school year -- is probably not the right time to try and rehabituate your DS into having lunch at school or even leaving with the rest of his classmates, especially if the school isn't equipped to support him through those changes. If your DS is otherwise in a relatively "good place" these days, maybe you could tackle one of them with the support of someone "on the inside" but not necessarily the whole school? For instance, is there a trusted, beloved teacher, school psych or social worker who could maybe support your DS leaving on time with the other kids? Shadow him, maybe? Or even contrive to just walk out alongside him, chatting about something of interest to him so that he feels supported and a bit protected? That might be one place to start.

 

I really don't think you have anything to fear, cutting him a break, as you say, while he's healing. But there might be something to be gained by making sure he's aware that you are, in fact, cutting him a break. That he's being given some atypical latitude and accommodations for the time being because he needs them, but that the goal is that he will get healthy enough that he no longer needs them. Depending on how his healing goes, you might want to start having conversations with him about how the plan is for things to be different for the next school year . . . how he will have lunch in school and come and go with the rest of his class, etc. Warm him up to the idea of consistent progression, rather than "comfortable habit," for lack of a better term.

[smartyjones]

mom - thanks so much for your thoughts. really helpful to have the older (of course, you're son, not you ) perspectives!

[MomWithOCDSon]

mom - thanks so much for your thoughts. really helpful to have the older (of course, you're son, not you ) perspectives!

You're welcome, and I probably am, too (older, that is!) I got a bit of a late start on the whole "mothering" thing.