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My husband and I have totally different ideas as to how open we should be about our son's condition. We both agree that providing details to his teachers and caretakers so they're aware of what they're dealing with is important, however, from there we differ.

 

I have no problem talking about it with friends and aquaintences, especially parents of his playmates. I think that letting them in on our struggles will help them realize that when my son attacks their child when leaving day care because their kid got too close or heaven forbid touched the trains that he has to make straight before we can leave (one of his OCD rituals - will rage for hours if he doesn't "fix them" before we go) it's not because he's a brat and we're bad parents - but more importantly, the more people/parents who know about PANDAS and start asking questions about it, learning more about it the closer we can get to having more people accept the diagnosis and our children.

 

My husband, on the other hand, doesn't seem to want anyone to know that anything is wrong - like it's a big secret that's not their business. Especially since in most social scenarios we've been failry successful in the intricate dance to help our son avoid triggers and meltdowns (although it doesn't always work), and no one other than teachers and caregivers (and some, but not all, of our closest family) should be told. I totally understand part of his point of keeping mum, that he doesn't want others to look at or treat our son differently just because of PANDAS - but I feel the benefits of spreading the word about PANDAS outweigh that, not only for our son but for other children suffering too.

 

Has anyone else had this disagreement? Thoughts?

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I think there's still a stigma in society with things like OCD or anything that may be seen as a "mental disorder". I know with us it's autoimmune but the symptoms that arrise mimic a "mental disorder". I think that perhaps your husband is still coming to grips what has happened and he is still finding a way to come to an acceptance. I think as time passes he will come around and slowly open up to others.

 

I deal/dealt with PANDAS in different ways. While we are in the chaos, I keep to myself. As he healed, I opened up. Maybe it will be the same for your husband.

 

Let your husband know that as for school, it should be kept private and the teachers should not be able to diclose info on your child to other parents. If you tell the school, tell them you want the matter kept private. Telling the school can be very helpful in that the teacher will tell you if odd behavior surface.

 

As for family, well, I would probably tell thsoe you come in constant contact with. So they are totally caught off guard if OCD,meltdown, etc should arrise when they are around your child.

 

I'm not going to lie, I had nasty things said about my son and his behaviors by people we "let into our world" and I will never forgive them for that, but I am happy that I have found a type of peace now that I am comfortable sharing my experience with others. Some things I still keep to myself or share with a very selected few.

Edited by Vickie
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My DH is a pretty quiet, introverted guy, so he doesn't tend to tell too much to too many, in any situation. I, on the other hand, am a talker, and I learn most of what I know from the give and take with other people, including friends, family and people I've never met on forums like this! Once we had DS's PANDAS relatively under control and I'd received my "Got Strep?" electronic flier, I actually emailed a handful of friends . . . not especially close friends in most cases (those folks already knew that we'd been through some six of the worst months of our lives!), but some folks who work with and/or have kids of their own and I thought they should at least get a "tickler" about what PANDAS is. I told them a very brief version of the events in DS's life over the previous months and a bit about the diagnosis, treatment, and the success we were experiencing. I was amazed when at least 50% of these folks dropped me a line back with their OWN PANDAS-related stories . . . a child in their daycare, a niece or nephew, the child of a friend, etc. It made me wish I'd reached out to them sooner, and it cemented an idea for me that talking about this is potentially the BEST way to obliterate the ignorance AND to find help and support even earlier than I might have first thought!

 

That being said, I do think there's a balance to be met, frankly. I think some of us are very ready to tell the whole story to just about anyone who'll listen, partially because we're relieved that we think we've FINALLY found a key to helping our kids recover, and partially because, as you said, if you can explain the child's behavior by virtue of the diagnosis, then you feel a weight can be lifted from the suspicion or maybe even hostility toward your child's behavior or your own. Sometimes, when the kid loses it in the line at the grocery store, you just want to hand out pre-prepared cards to all the folks behind you, right? Something that says, "My kid has an auto-immune syndrome that's causing inflammation in the brain and sometimes inhibits his ability to make age-appropriate choices. Please regard us with some level of tolerance." :(

 

Meanwhile, others want to closely guard the medical and psychiatric privacy of their kids (with good reason), and being as PANDAS and PITANDS is already widely misunderstood, assuming it's even been heard of before, opening ourselves or our children to that potential ignorance can be a little scary. I mean, we need to fight the good fight on behalf of our kids with their teachers and caretakers, but do we really have the time or energy to take on that battle with Great Aunt Jenny who still thinks cod liver oil is a cure-all or the neighbor who just wants your kids to stay off her lawn and out of her flower beds?

 

So, hopefully, you and your DH can come to some agreement that there's not really any black and white in the issue, and you'll decide who you bring into The Club on a case-by-case basis? Maybe he makes the call with his side of the family, and you make it with yours? When it comes to friends and acquaintances, again, I guess I would just accept a "divide and conquer" method, with each of you proceeding as you feel comfortable. Whatever you do, though, don't let it cause a rift between you and DH; you guys need each other right now!

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I deal/dealt with PANDAS in different ways. While we are in the chaos, I keep to myself. As he healed, I opened up. Maybe it will be the same for your husband.

 

This was our approach too. We did tell teachers right away - my son had violent tics that were obvious, so we pretty much had to discuss it. We told close family - but they are all long distance, so it was an fyi - not something where we had to justify behaviors. But we didn't discuss it much with neighbors or parents of my son's classmates. We knew that he would get better and that years from now, he might not appreciate that people would still remember him as the kid with OCD and tics. We felt we owed him the right to his privacy.

 

I did tell some parents about PANDAS - but in general terms so they'd be aware of the disease. I didn't get into details about rages or specific behaviors, because the few times I did, I got that look that let me know I sounded like I was making excuses. There are some things that people just cannot understand unless they live it. So I was all for raising awareness, but I tried to balance that with a respect for my son's privacy.

 

Like Vickie, I am more open when we are in a good place. Then I can come across in a more reasonable manner, without sounding like I'm in denial about my child's behaviors. I try to discuss the disease as it may apply to all children, but I only share details about my son on a "need to know" basis.

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Yes...it is a tricky situation, how much to disclose and to whom.

 

We have a couple of close friends that know a lot....and it has been helpful b/c they've warned us when one of their kids has strep, or made observations (esp. if your child is at their house w/out you) which help us keep track of symptoms.

 

For the people that aren't as close, it's a little tricky. Usually when I mention "autoimmune" I start to lose them! With others, we might relate, even if they don't have a child with PANDAS b/c they have a child with other issues or medical problems. In general, I don't mention much.

 

The other factor to take into account is that some symptoms are more stigmatizing/less socially acceptable than others. It would be harder to get sympathy for a kid with rages ('cause that is so easily interpreted as poor parenting!), vs. a nice kid with tics (think Lauren Johnson), or my dd who was hospitalized b/c she stopped eating (couldn't very well cover that one up anyway!, everyone knew she was in the hospital). At that point, we had to explain to her whole class (2nd graders)...we simplified it, said she was sick b/c she had a bad reaction to strep, kind of like a kid with a peanut allergy might get really sick from eating peanuts (so the kids didn't have to worry that they would get so sick if they got strep.)

Edited by EAMom
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My husband and I have totally different ideas as to how open we should be about our son's condition. We both agree that providing details to his teachers and caretakers so they're aware of what they're dealing with is important, however, from there we differ.

 

I have no problem talking about it with friends and aquaintences, especially parents of his playmates. I think that letting them in on our struggles will help them realize that when my son attacks their child when leaving day care because their kid got too close or heaven forbid touched the trains that he has to make straight before we can leave (one of his OCD rituals - will rage for hours if he doesn't "fix them" before we go) it's not because he's a brat and we're bad parents - but more importantly, the more people/parents who know about PANDAS and start asking questions about it, learning more about it the closer we can get to having more people accept the diagnosis and our children.

 

My husband, on the other hand, doesn't seem to want anyone to know that anything is wrong - like it's a big secret that's not their business. Especially since in most social scenarios we've been failry successful in the intricate dance to help our son avoid triggers and meltdowns (although it doesn't always work), and no one other than teachers and caregivers (and some, but not all, of our closest family) should be told. I totally understand part of his point of keeping mum, that he doesn't want others to look at or treat our son differently just because of PANDAS - but I feel the benefits of spreading the word about PANDAS outweigh that, not only for our son but for other children suffering too.

 

Has anyone else had this disagreement? Thoughts?

Oh my, Not only were my husband and I on different pages sometimes we were not even in the same book. In my personal experience I chose to keep my daughters personal problems her own. I however, did not have issues in school. Many of my closest friends are unaware of our problems. The people I confided in were the ones that could help me, for example, friends who worked in the psyc. fields and some doctors who are friends of mine. This illness is complicated and hard to explain to someone who does not have a clue what is like.

When I look back now I know in my heart I made the right choice. With only one month left till my daughters high school tenure I am so glad with every choice I made.(now it is time for my husband to have some humble pie)

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My husband and I have totally different ideas as to how open we should be about our son's condition. We both agree that providing details to his teachers and caretakers so they're aware of what they're dealing with is important, however, from there we differ.

 

I have no problem talking about it with friends and aquaintences, especially parents of his playmates. I think that letting them in on our struggles will help them realize that when my son attacks their child when leaving day care because their kid got too close or heaven forbid touched the trains that he has to make straight before we can leave (one of his OCD rituals - will rage for hours if he doesn't "fix them" before we go) it's not because he's a brat and we're bad parents - but more importantly, the more people/parents who know about PANDAS and start asking questions about it, learning more about it the closer we can get to having more people accept the diagnosis and our children.

 

My husband, on the other hand, doesn't seem to want anyone to know that anything is wrong - like it's a big secret that's not their business. Especially since in most social scenarios we've been failry successful in the intricate dance to help our son avoid triggers and meltdowns (although it doesn't always work), and no one other than teachers and caregivers (and some, but not all, of our closest family) should be told. I totally understand part of his point of keeping mum, that he doesn't want others to look at or treat our son differently just because of PANDAS - but I feel the benefits of spreading the word about PANDAS outweigh that, not only for our son but for other children suffering too.

 

Has anyone else had this disagreement? Thoughts?

[/quot

I am new to this and do not have much to say about pandas but I have a son16 who has been through OCD/tics in a regular setting classroom. ( He did OK academically--there was always room to improve but always passed with very little effort--never turned in his homework and if this is not an indication that something is wrong with him then what is?---)

My son's OCD symptom is not noticeable in a way because he does not do rituals instead he bottles up and turns into rage ( I suspect mainly in private or to me) but he does have his moments and teachers and other kids do notice that he has some issues

 

Having a son with handicap always made me sensitive to what others might think or say and how others would treat him when he had one of his moments.

I used to open up to teachers or other parents with my son's difficulty and seek out their understanding and help and I found that it was not good to do so.

I realized nobody would understand pandas or inner OCD unless he/she has close experience with them. I had hard time convincing my two sisters who are medical doctors.(I suspect my anesthesiologist sister still believes I simply did bad job raising my son) PANDAS or not most people were judgmental and opinionated as soon as they learned that my son was taking some kind of medication or had some problems ( disclosed by me)

I casually asked my son's 4th grade teacher to look out my son's sugar intake during teacher conference and he did do just that by not passing any candies during Halloween party saying to whole classroom that my son should not be given any candy because my son would act up and become unstable. My son was very hurt for a long long time afterward. ( I only mentioned that to the teacher because my son was on sugar free diet due to a book I read at the time) I had many similar experiences with teachers and other parents to make me believe that either you put him in a special setting or make your child life as normal as possible and not give chance for others to judge your child base on your own worries.

 

Of course you have to use your own discretion whom or when you want to seek out for help or understanding (and you should)but I would definitely not expect these from just anyone.

Thank you for reading

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I have no problem talking about it with friends and aquaintences, especially parents of his playmates. I think that letting them in on our struggles will help them realize that when my son attacks their child when leaving day care because their kid got too close or heaven forbid touched the trains that he has to make straight before we can leave (one of his OCD rituals - will rage for hours if he doesn't "fix them" before we go) it's not because he's a brat and we're bad parents - but more importantly, the more people/parents who know about PANDAS and start asking questions about it, learning more about it the closer we can get to having more people accept the diagnosis and our children.

 

 

airial - up until about a month ago, i'd say i had an extremely similar position to you. i don't know if you read a post i had but i had a negative situation with this. i believe all involved didn't have bad intentions and it's okay now, but was just regretable.

 

we had a horrible school conference and weren't sure if we should have my son continue for the year. this presented a conundrum b/c he had school phobia last year and seems to be enjoying school this year. i wanted to get some the most info i could and sent an e-mail to select parents in the class - both my friends and a few others who are aware of my son's situation probably b/c they've witnessed something and i explained - all people i trusted as part of my 'inner circle' to help my son. i asked what they may have witnessed themselves when in the class and what they may have heard from their children.

 

it was helpful b/c overwhelmingly the info was similar to what we believe about him -- he does fairly well with other kids, the other kids like him and don't seem to notice oddities, he's sometimes overly silly, he's often withdrawn in certain situations (lunch, group activities), he is not one that the parents hear of often as troublesome (and there are a few of those). i think the bottom line is that yes, he can be challenging and i think the teacher is just tired of it. other parents expressed where they've had somewhat similar feedback from the teacher about their "healthy, normal kids" . we don't now feel it's an unhealthy situation for the next few months.

 

anyway -- one of those people i included mentioned something to the teacher. she then solicited a few other parents to get a copy of my e-mail. someone did forward it to her. i'm not sure of the details of how/who all this happened. i was so very upset about this b/c i saw it as such a breech of trust. obvioulsy, if she didn't get it in the first place, i didn't send it to her and she should have asked me and the other person should have asked me as well.

 

ultimately, it was me who included too many or the wrong people in this. i'm pretty much over it now and seeing that there's only a few more months of the school year. but - lesson learned! i need to be careful with whom and what i say about my son!

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I too have this same problem. I am very open with people about my son's condition. My son has been in a moderate flare up for the past two weeks with increased tics and anxiety. He recently joined a new soccer team with mostly kids he doesn't know. The first few practices were fine and then he started having this flair and he cried a lot during the next two and complaining that his stomach hurt (it was clearly anxiety caused). He was also having anxiety issues at school. My husband tends to get hard on him and tell him to dry it up. I also make him continue practice but I take a more sympathetic approach and try to boost his confidence. My husband pulled the coach aside to talk with him the other night. At the same time I was talking with some moms and sharing a bit about his condition and found out that one of the boys on the team had just started antibiotics 24hrs before for strep. My husband on the other hand didn't say anything about PANDAS to the coach - only that my son was having a hard time "adjusting" to his new team. I wish my husband would have been more open. Every practice since that day my son has been fine and I really think it was 90% PANDAS related.

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My DH is a pretty quiet, introverted guy, so he doesn't tend to tell too much to too many, in any situation. I, on the other hand, am a talker, and I learn most of what I know from the give and take with other people, including friends, family and people I've never met on forums like this! Once we had DS's PANDAS relatively under control and I'd received my "Got Strep?" electronic flier, I actually emailed a handful of friends . . . not especially close friends in most cases (those folks already knew that we'd been through some six of the worst months of our lives!), but some folks who work with and/or have kids of their own and I thought they should at least get a "tickler" about what PANDAS is. I told them a very brief version of the events in DS's life over the previous months and a bit about the diagnosis, treatment, and the success we were experiencing. I was amazed when at least 50% of these folks dropped me a line back with their OWN PANDAS-related stories . . . a child in their daycare, a niece or nephew, the child of a friend, etc. It made me wish I'd reached out to them sooner, and it cemented an idea for me that talking about this is potentially the BEST way to obliterate the ignorance AND to find help and support even earlier than I might have first thought!

 

That being said, I do think there's a balance to be met, frankly. I think some of us are very ready to tell the whole story to just about anyone who'll listen, partially because we're relieved that we think we've FINALLY found a key to helping our kids recover, and partially because, as you said, if you can explain the child's behavior by virtue of the diagnosis, then you feel a weight can be lifted from the suspicion or maybe even hostility toward your child's behavior or your own. Sometimes, when the kid loses it in the line at the grocery store, you just want to hand out pre-prepared cards to all the folks behind you, right? Something that says, "My kid has an auto-immune syndrome that's causing inflammation in the brain and sometimes inhibits his ability to make age-appropriate choices. Please regard us with some level of tolerance." :)

 

Meanwhile, others want to closely guard the medical and psychiatric privacy of their kids (with good reason), and being as PANDAS and PITANDS is already widely misunderstood, assuming it's even been heard of before, opening ourselves or our children to that potential ignorance can be a little scary. I mean, we need to fight the good fight on behalf of our kids with their teachers and caretakers, but do we really have the time or energy to take on that battle with Great Aunt Jenny who still thinks cod liver oil is a cure-all or the neighbor who just wants your kids to stay off her lawn and out of her flower beds?

 

So, hopefully, you and your DH can come to some agreement that there's not really any black and white in the issue, and you'll decide who you bring into The Club on a case-by-case basis? Maybe he makes the call with his side of the family, and you make it with yours? When it comes to friends and acquaintances, again, I guess I would just accept a "divide and conquer" method, with each of you proceeding as you feel comfortable. Whatever you do, though, don't let it cause a rift between you and DH; you guys need each other right now!

I love your reply...I am off to the print shop to make the cards !!!

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I too have this same problem. I am very open with people about my son's condition. My son has been in a moderate flare up for the past two weeks with increased tics and anxiety. He recently joined a new soccer team with mostly kids he doesn't know. The first few practices were fine and then he started having this flair and he cried a lot during the next two and complaining that his stomach hurt (it was clearly anxiety caused). He was also having anxiety issues at school. My husband tends to get hard on him and tell him to dry it up. I also make him continue practice but I take a more sympathetic approach and try to boost his confidence. My husband pulled the coach aside to talk with him the other night. At the same time I was talking with some moms and sharing a bit about his condition and found out that one of the boys on the team had just started antibiotics 24hrs before for strep. My husband on the other hand didn't say anything about PANDAS to the coach - only that my son was having a hard time "adjusting" to his new team. I wish my husband would have been more open. Every practice since that day my son has been fine and I really think it was 90% PANDAS related.

 

Your husband sounds just like mine. My husband is so hard on our son. He coached his basketball team and one day I stood up and yelled Take Him Off The Court Now!I My son was having a moment and my husband just didn't get it. He saw him as being defiant. He doesn't say much about what is going on, even with me. We have had it out many times. At times I feel like he just doesn't give a **** My husband has been taking my son for all his labs. Well today I took my son to have the Cunningham labs done and the lab techs recognized my son. They asked me what was wrong with him because of all the unusual labs he has had done. We live in a very rural area.Apparently my husband hasn't said much. They got an ear full today lol. I have one son and two daughter and I know its probably hard for my husband to accept but I am his wife and if I cannot rely on him for support , who can i rely one.

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My daughter is perfectly aware of what is happening, but also rationally realize that people can not understand that is not true that "she is no longer herself", but simply there is something in those moments that does not allow her to be able to have control over her actions. and the thing that hurts her the most are the expressions on the faces of the people. :(

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We feel is better to let others know so they can alert us if they have strep going around. So far, it has really been a blessing. Just last week two different moms called to tell me they had it in their houses. This week it hit us, but I was able to catch it a lot quicker because I was sort of waiting for it to hit home.

It is a personal decision, but I think once people know what is going on, they are very understanding, and a lot more compassionate towards the child.

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I just want to add that we are not disagreeing on protocol....

we have a as good and as strong a realatonship as the best....

But lately.....the vocal......just imagine a sirine never shutting off...and you have to watch tv, eat your dinner,etc....and that thing can't even be unplugged....

and since all i do is research this stuff ...the worse he is the more i research...the less time i have for the other kids...the more the other kids need stress me...

hubby was unemployed for about 5 months ...we are not earning as much and dipped quite a bit into savings...

not much of anything we do is coverd by ins...

hubby is stll new ^6 months^ on job...trying to prove himself...he works from home.....

he says if you can't let me work...i can't make the money for you to do all the things you want to do with ds....

he's snapping at me....i don't want to talk unless its about what to do next....

i'm tired of thinking what to eat that is safe...there are 5 of us in the household....the kids will be kids when it comes to eating

and we eat 5-6 times aday.......

WHEN i become a $$$$$$ i'm getting a house cleaner and chef to live hear....I DON'T WANT TO THINK ABOUT, OR CLEAN UP FOOD ANYMORE..

i've lost more weight, that i didn't have to offer.....

I want someone to watch my kids for 6 months so i can just focus

ITS A BIG CIRCLE J

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