I want to shout from the rooftops, but DS doesn't want anyone to k

[monarchcat]

My son is 9 and does not want ANYONE to know that he has PANDAS. He hates the fact that even his grandparents know. He doesn't realize that I've talked about it with my friends, his teacher, the school counselor, etc. He would flip. This makes it really difficult because I want to do so much in spreading the word about PANDAS. I post about it on FB quite a lot, so many people do know, especially now that my daughter has it, too. My son doesn't even want people knowing about my daughter because he says then they will assume he has it, too.

 

I'm finding it difficult because I really want to be an advocate and talk about PANDAS because there are so many potentially undiagnosed kids out there, and I want to generate publicity to garner votes for the Pepsi grant. Yet, I've already abused his trust by talking about it as much as I have. He would be very upset to know that I was even posting on this board to people we don't know, let alone telling friends and relatives. He's very concerned with how he appears to other people, and more than a touch paranoid that people think he's "ugly", "stupid", "no one likes him", etc. (he's a very cute, smart boy but doesn't see it at all).

 

Anyone else have the same issue? How do you handle it?

[harpazo_hope]

My son is 9 and does not want ANYONE to know that he has PANDAS. He hates the fact that even his grandparents know. He doesn't realize that I've talked about it with my friends, his teacher, the school counselor, etc. He would flip. This makes it really difficult because I want to do so much in spreading the word about PANDAS. I post about it on FB quite a lot, so many people do know, especially now that my daughter has it, too. My son doesn't even want people knowing about my daughter because he says then they will assume he has it, too.

 

I'm finding it difficult because I really want to be an advocate and talk about PANDAS because there are so many potentially undiagnosed kids out there, and I want to generate publicity to garner votes for the Pepsi grant. Yet, I've already abused his trust by talking about it as much as I have. He would be very upset to know that I was even posting on this board to people we don't know, let alone telling friends and relatives. He's very concerned with how he appears to other people, and more than a touch paranoid that people think he's "ugly", "stupid", "no one likes him", etc. (he's a very cute, smart boy but doesn't see it at all).

 

Anyone else have the same issue? How do you handle it?

 

 

My son is similar. He doesn't like me talking about it with anyone, and when he sees me typing about him on message boards it causes him anxiety. I kind of know how you feel about wanting to scream it from the roof tops, but for me it's a selfish reason. I feel like yelling, "We're hurting here! This is hard! Help!" but my boy doesn't want people to know. Lately he can't help it though and if he's around anyone long enough they have seen how bad it's been getting.

 

I told my son that there's a boy out there like him that doesn't want people to know about his "tics and stuff" and is worried people will think he's ugly, stupid, or no one likes him. He seemed interested to know there's someone else that feels like that and immediately asked how old he was. My son is almost 14.

[Chemar]

one of our most active and helpful posters on the TS board withdrew from posting because it was so upsetting her son

 

I think one can still be involved and advocate without having to post about one's child. Having you child's trust is most important IMHO

 

My son doesnt mind me sharing about him as he wants to help others, but if he asked me to stop, I would continue posting to try to be helpful, but would just stop referring to him in any way.

 

also, your son is at that very awkward preteen age where image and acceptance etc matters so much to them, so he likely just doersnt want to be seen as "different"

Edited May 2, 2010 by Chemar

[becjonz]

My son is 9 and does not want ANYONE to know that he has PANDAS. He hates the fact that even his grandparents know. He doesn't realize that I've talked about it with my friends, his teacher, the school counselor, etc. He would flip. This makes it really difficult because I want to do so much in spreading the word about PANDAS. I post about it on FB quite a lot, so many people do know, especially now that my daughter has it, too. My son doesn't even want people knowing about my daughter because he says then they will assume he has it, too.

 

I'm finding it difficult because I really want to be an advocate and talk about PANDAS because there are so many potentially undiagnosed kids out there, and I want to generate publicity to garner votes for the Pepsi grant. Yet, I've already abused his trust by talking about it as much as I have. He would be very upset to know that I was even posting on this board to people we don't know, let alone telling friends and relatives. He's very concerned with how he appears to other people, and more than a touch paranoid that people think he's "ugly", "stupid", "no one likes him", etc. (he's a very cute, smart boy but doesn't see it at all).

 

Anyone else have the same issue? How do you handle it?

 

 

Oh gosh that makes it so hard. My 10 year old son viewed his diagnosis so differently- it was a relief. He had been quietly picked on by classmates who found his tics annoying and distracting (they were) and so PANDAS gave him a reason for them and a way to prove he really couldn't help it. I think one thing that helped is that our pediatrician who was skeptical at first became convinced by our specialist. The day Matt's bloodwork confirmed PANDAS the dr. told him "you must have felt like such a wierdo all this time, what a relief to know there is an answer, you are not a wierdo, you have a medical condition and we can treat it. We can give you meds and make things better for you" For some reason knowing it was a medical condition gave Matt comfort. His teachers also gave him the opportunity to educate his class. He made a power point all on his own to teach his class in a humorous way about his tics and PANDAS. THe next week when given a hard time about the tics (an uninformed adult insisted he was being a smartass and really could stop the tics. ) he told me "we explained that I really can't stop" I wanted to cry tears of joy at that "we" - his classmates had stood up for him! THey had an about face with just a little education.

 

I have sent his story to friends and family and encouraged them to forward it all with Matt's blessing. I too would be so frustrated if I could not pass on the info to help other kids.

 

If you think your son would benefit from a pen pal either through email or snail mail I would set up an email for Matt. He is willing and they are close in age. It might be good to talk to someone else his age. I know it would be good for Matt.

[LNN]

We've been lucky in that my ds (7) doesn't realize there's a stigma associated with OCD. We've always presented PANDAS as an allergy to strep that produces nasty symptoms. But I do realize that as he gets older, he may hate the idea of being "outed", so I don't use his real name and usually just refer to "my son."

 

One thing that has really helped him is to know other kids who have Pandas. He's met one boy in our town and met one boy at Georgetown when we were there for Pex and he knows he'll meet a few others when we go to the OC Foundation conference in DC in July. So he doesn't feel like his condition is so rare. Plus, one of his good friends has non-Pandas OCD, which we never would have known if we ourselves hadn't been open about Pandas.

 

We take the approach that people can't help you if they don't know you need help. And there are other kids who could get real help if we share our story.

 

Still, it's so important for teens to fit in. So I get how the thought of talking about something that singles them out could be painful. We're talking about a group who thinks acne is an end-of-the-world event, so I can understand how talking about OCD and tics would make them want to crawl under a large rock.

 

I guess my suggestion would be to see if you can compromise - respect his privacy, especially in your own hometown, but explain that certain people, like teachers, may have to know, the same way they need to know about kids who have hypoglycemia or asthma. Then explain that you too have a need/right to have a social support system and talk with other people who understand what you're going thru. Promise not to use his name or divulge anything too personal. See what he's willing to share and what things he considers absolutely off limits. Then stick by that agreement. As important as it is to shout from the roof tops, having his trust as you approach the rough teen years is far more important.

[Ellen]

It is possible that your son may change his thinking and become more open about his PANDAS over time. Two years ago my son would not openly talk about his disorder and the mention of PANDAS or OCD in front of him was almost always a trigger. Now he is very open and comfortable talking about his illness and as I have mentioned in other posts, he created a website (www.pandas-syndrome.webs.com) for other kids with PANDAS and their parents. Maybe your son would want to check it out some time to see that it is okay and sometimes even helpful to talk about this openly with other kids.

 

Ellen

 

 

 

My son is 9 and does not want ANYONE to know that he has PANDAS. He hates the fact that even his grandparents know. He doesn't realize that I've talked about it with my friends, his teacher, the school counselor, etc. He would flip. This makes it really difficult because I want to do so much in spreading the word about PANDAS. I post about it on FB quite a lot, so many people do know, especially now that my daughter has it, too. My son doesn't even want people knowing about my daughter because he says then they will assume he has it, too.

 

I'm finding it difficult because I really want to be an advocate and talk about PANDAS because there are so many potentially undiagnosed kids out there, and I want to generate publicity to garner votes for the Pepsi grant. Yet, I've already abused his trust by talking about it as much as I have. He would be very upset to know that I was even posting on this board to people we don't know, let alone telling friends and relatives. He's very concerned with how he appears to other people, and more than a touch paranoid that people think he's "ugly", "stupid", "no one likes him", etc. (he's a very cute, smart boy but doesn't see it at all).

 

Anyone else have the same issue? How do you handle it?

[monarchcat]

Thanks so much for your replies, guy! Ellen, my son has looked at your son's website and thought it was cool. He likes his other site, too, the "fun" one with games, etc. I thought his sites were really well done and was very impressed!

 

I think it would be nice to get him in touch with other kids... He does have an email address, but I don't want to post it for obvious reasons. If you think your child would like an email pen pal, would you send me a PM and I'll give you my son's email address? I'll ask him first, of course, but I think he'd really like to get emails from kids who also have PANDAS and can relate and maybe help him open up a bit about it.

[Ellen]

I think my son would love an email penpal. I'll send you a PM.

 

Thanks so much for your replies, guy! Ellen, my son has looked at your son's website and thought it was cool. He likes his other site, too, the "fun" one with games, etc. I thought his sites were really well done and was very impressed!

 

I think it would be nice to get him in touch with other kids... He does have an email address, but I don't want to post it for obvious reasons. If you think your child would like an email pen pal, would you send me a PM and I'll give you my son's email address? I'll ask him first, of course, but I think he'd really like to get emails from kids who also have PANDAS and can relate and maybe help him open up a bit about it.

[monarchcat]

I asked my son and he was very interested in having other kids with PANDAS to email with!

[smartyjones]

I'm finding it difficult because I really want to be an advocate and talk about PANDAS because there are so many potentially undiagnosed kids out there, and I want to generate publicity to garner votes for the Pepsi grant. Yet, I've already abused his trust by talking about it as much as I have. He would be very upset to know that I was even posting on this board to people we don't know, let alone telling friends and relatives. He's very concerned with how he appears to other people, and more than a touch paranoid that people think he's "ugly", "stupid", "no one likes him", etc. (he's a very cute, smart boy but doesn't see it at all).

 

Anyone else have the same issue? How do you handle it?

 

monarchcat - i have a different story that doesn't really relate but your post made me think about it. my son is 5. he knows he takes medicine and acts troublesome sometimes but really doesn't know why. i've explained but he's really not so interested. he's not really aware of what i say about anything to anyone so it doesn't enter his realm of consciousness.

 

i think you can work out a balance of boundaries for you and your son. you can let him know that you will not divulge any specifics about him and his illness but you would like to talk about you and how your knowledge has been expanded about infectious conditions.

 

the story it made me think of was that last week we had a busy saturday planned. after pandas5 son's t-ball game, we went to watch non-pandas 8 baseball game. then had to run to the store to buy present for a birthday party and go to the party. one of 5 yo's issues is potty delay. at 8 yo's game, 5yo sat in my lap, squirming, pushing his face into mine, singing, humming etc. it was driving me crazy and i couldn't see game. there was no way i wanted to go to a store and a birthday party with him. before going to the store, i said we had to come home and at least 'try' before store and party. he was fighting it. i said, 'you can decide if and when you pee and poop as long as it's not bothering me. you were in my lap dragging me into your not pooping, so you involved me and now i can say you have to try."

 

i think you can have both worlds - you can explain you're not going to talk about him but you want to help expand other's knowledge and advocate for what you believe in. you can both arrive at some phrase that works like, 'since i've been touched personally by pandas' or 'i've recently become aware of infectious conditions' or something that serves both your needs and assure him you won't tell his stories directly but other information you've learned.