Halloweens Gone By....

[momtocole1]

I am wondering if others have had issues with their PANDAS kids not wanting to dress up for halloween. It was always such a fun holiday for me growing up. Put on a costume and go get all the candy you can possibly ever want... Not for my son though. He has always struggled with Halloween. I used to think it was just him being afraid of the "scary" costumes, but he was scared of his own costume, even the cute little clown one.

 

I distinctly remember buying two really fun costumes one year. They were dalmation dogs from the Disney store, one for me and one for him. I put mine on and danced around to make him laugh but when I put his on, he dropped to the floor writhing and screaming. He could not rip it off fast enough.

 

Most halloweens he stays home with my husband and passes out candy. When he was younger I would bring an extra bag and take his brother and sister (twins) to trick or treat and explain to all our neighbors. I must have sounded so lame, "Uh excuse me, my son Ryan is a little afraid to come trick or treating, could I get a piece of candy for him". Most of the parents would either look at me with that "Are you crazy, what kid doesn't like halloween look" or they would feel sorry for me or him and give us a bunch of candy.

 

He is just about too old to trick or treat now anyway. Maybe he has a couple of years left. He is almost 12 though. I want him to go trick or treating, I want him to want to. I am going to make that one of my wishes, that by next year he will be recovered enough to go trick or treating, willingly and joyfully.

 

Maybe I could take one of those little orange UNICEF boxes where you collect money for the poor and cross out the UNICEF and put I.V.I.G. I need some serious sleep right now. I am punchy and feeling sorry for myself and my son!

 

I am so grateful for all of you on this forum...

 

Goodnight...

[faith]

Judy,

Well.....I'm waiting for when my son DOESN'T want to dress up and go trick or treating anymore. "I" am the one who hates it, lol!

 

Seriously, I understand. but really, I think kids at this age start to not want to go, but maybe he will feel better "taking" you twins out, like he doesn't have to dress up, just walk with them and wait while they go to the door. I know you have to be there too, but maybe that's how he'll eventually come to enjoy it. He'll be the big brother taking his brother and sister out. Like I say, I have this aversion to Halloween, don't know why, but I was kind of nervous about it as a child too, but I have 'recovered' by now having my own child and enjoying it again thru his eyes. I hate all the candy too, btw, because I know it contributes to his problems, mostly the tics.

 

I know things will be better soon. Try to enjoy it with your little ones, and I'm sure he's just as content giving out the candy. Maybe you could just ask him if he'd like to 'help' keep an eye on the twins while you're walking around, just for a few blocks, he doesn't have to wear anything. or try to enjoy it another way, like going around and finding fun or scary decorated houses in the area. We have ones where people go crazy and decorate with scary type stuff and people gather and hang out to watch the display.

 

Try to have fun, like I said, things are going to get better.

 

hugs,

Faith

[thereishope]

Last year my son was in a very hard time for Halloween. I made his costume, Ben 10, per his request. Then he started saying he didn't want it, didn't want to dress up, etc. After many days and many questions, it turned out there was one small thing he wanted changed. It wasn't what he envisioned. So, I changed it and he put it on and went trick or treating. It was a very nerve wrecking evening since I didn't know what was going to happen (he was only a couple weeks post + strep test), but we survived. I even have a picture! Granted, not smiling, but I have a picture.

[ilovedogs]

Halloween is a HUGE problem for us. Ds didn't dress up last year b/c he just felt that Halloween was stupid and that he doesn't even eat most of the candy anyway. We drove up north and ate dinner at a restaurant in the mountains and then came home, missing the whole Halloween experience. Things went well. Well, this year my mom took him to the Halloween superstore and ds seemed fine while there, but he started having anxiety issues about some of the masks and displays. He woke up this AM crying at 6 AM b/c of the vision of one of the scary masks! So, Halloween is definitely a problem for us, yes!

 

Bonnie

[thereishope]

.

Edited October 18, 2016 by vickie

[BethM33]

Oh my gosh!

I'm so glad you said this.

My son is 5 and has PANDAS.

The other day at school, they had "funny feet" day, where they were to wear mismatched shoes or socks, etc...something funny or cute...

He REFUSED. LOL

I was SO confused! I never even thought about it being related to PANDAS at all!!! you just opened my eyes!

Is that possible as to why he didn't want to do it?

In fact, he ended up crying about it.

I told him he did not have to do it , or that we could do it and I could just put his normal shoes and socks in his bag, so he could change when he wanted to.

It literally took me 40 minutes to get him to decide what to do! HAHA! I thought "OH MY WORD, WHY is this so difficult?!!!"

Now I see, it may have been the PANDAS?

Eventually, he wore 2 different socks, but ended up changing at recess. :-)

Luckily, he does like Halloween though...strange, isn't it?

[BethM33]

Last year my son was in a very hard time for Halloween. I made his costume, Ben 10, per his request. Then he started saying he didn't want it, didn't want to dress up, etc. After many days and many questions, it turned out there was one small thing he wanted changed. It wasn't what he envisioned. So, I changed it and he put it on and went trick or treating. It was a very nerve wrecking evening since I didn't know what was going to happen (he was only a couple weeks post + strep test), but we survived. I even have a picture! Granted, not smiling, but I have a picture.

 

 

 

Vickie, you just reminded me of something else!!

Peyton play soccer and LOVES it, but during his first year, he would NOT play...he just stood there.

I let him.

During the last few games, I forgot to bring his shin guards and would you believe he ran out there and scored 8 goals?!!!!!!! I am NOT kidding!

It was the shin guards he hated, but he never told me!!! LOL

After that, I told him he had to wear SOMETHING on his legs, to prevent him from being hurt...I took him shopping, he picked them out and he's been playing ever since... WOW... My eyes are opening!!!

I had no idea people has similar stories!

[momtocole1]

Hi Beth,

 

Yes, I think the problem with the funny feet day was definitely PANDAS. My son is so upset by shoes, socks, where his shoes are. How he puts on his socks and shoes. He can never put his shoes on in the house, he has to put them on in the car, but not until we get right at the place where we are going. It does drive me a little crazy, but I must say I am more use to it now. I prepare for it. If I try to fight him on it he will have a full blown melt down.

 

I'm glad that your son likes halloween though!

 

Oh my gosh!

I'm so glad you said this.

My son is 5 and has PANDAS.

The other day at school, they had "funny feet" day, where they were to wear mismatched shoes or socks, etc...something funny or cute...

He REFUSED. LOL

I was SO confused! I never even thought about it being related to PANDAS at all!!! you just opened my eyes!

Is that possible as to why he didn't want to do it?

In fact, he ended up crying about it.

I told him he did not have to do it , or that we could do it and I could just put his normal shoes and socks in his bag, so he could change when he wanted to.

It literally took me 40 minutes to get him to decide what to do! HAHA! I thought "OH MY WORD, WHY is this so difficult?!!!"

Now I see, it may have been the PANDAS?

Eventually, he wore 2 different socks, but ended up changing at recess. :-)

Luckily, he does like Halloween though...strange, isn't it?

[thereishope]

.

Edited October 18, 2016 by vickie

[Stephanie2]

We have had good and bad times with halloween. Don't get me started on the school halloween parties. Whenever I show up at school, he runs to me and cries and tantrums and wants to go home. I always sat there baffled as to why the other kids are participating in their halloween parties with their mommies by their sides and mine is falling apart. I eventually started keeping him home on these days so we didnt' have to suffer the stress and humiliation of these episodes!

 

What baffles me is that right now my son is on zithromax and I consider him to be in recovery mode, and he STILL fell apart the other day at his party. He had to be on my lap (he is 5). I was there to VOLUNTEER for heaven's sakes. The teacher kept looking at us wondering if she should help, but she was trying to run the party and she needed my help! Ugh! I just could have cried, I just kept thinking, "when will we have a normal life"? So I finally got him off my lap and went about helping with the party, but my son had to hold my hand the whole time...

 

Anyway, my son does like to trick or treat. I really think he likes the repetitive nature of collecting things, part of the OCD in some way. So it is right up his ally. Although, he is already getting anxious about the paint I am planning to put on his face!

 

This thread just reminds me that I am not alone!! Thanks! And good luck this year and next! Maybe it is pandas, combined with his personality in general!!

 

Stephanie

 

I am wondering if others have had issues with their PANDAS kids not wanting to dress up for halloween. It was always such a fun holiday for me growing up. Put on a costume and go get all the candy you can possibly ever want... Not for my son though. He has always struggled with Halloween. I used to think it was just him being afraid of the "scary" costumes, but he was scared of his own costume, even the cute little clown one.

 

I distinctly remember buying two really fun costumes one year. They were dalmation dogs from the Disney store, one for me and one for him. I put mine on and danced around to make him laugh but when I put his on, he dropped to the floor writhing and screaming. He could not rip it off fast enough.

 

Most halloweens he stays home with my husband and passes out candy. When he was younger I would bring an extra bag and take his brother and sister (twins) to trick or treat and explain to all our neighbors. I must have sounded so lame, "Uh excuse me, my son Ryan is a little afraid to come trick or treating, could I get a piece of candy for him". Most of the parents would either look at me with that "Are you crazy, what kid doesn't like halloween look" or they would feel sorry for me or him and give us a bunch of candy.

 

He is just about too old to trick or treat now anyway. Maybe he has a couple of years left. He is almost 12 though. I want him to go trick or treating, I want him to want to. I am going to make that one of my wishes, that by next year he will be recovered enough to go trick or treating, willingly and joyfully.

 

Maybe I could take one of those little orange UNICEF boxes where you collect money for the poor and cross out the UNICEF and put I.V.I.G. I need some serious sleep right now. I am punchy and feeling sorry for myself and my son!

 

I am so grateful for all of you on this forum...

 

Goodnight...

[thereishope]

.

Edited October 18, 2016 by vickie

[BethM33]

Y'all are just awesome. :-) Thank you for sharing.

 

Peyton has a sensory thing too...he has this thing with sweaters being "too itchy" even if it's NOT. He says he feels like he's choking in it. Bless his heart...

 

Tonight he will be Darth Vadar. He HAD to have the black gloves to go with it though.

He loves going door to door and like you said, I think mine too just loves collecting things, especially food. He does LOVE to eat....

Luckily, he eats healthy foods, but boy, on Halloween he is all about candy! :-)

 

Whatever the case, I Hope you all have a safe and happy time...they won't be little forever will they? :-(

Enjoy what you can and HAPPY HALLOWEEN!!!!!

[momtocole1]

Hi Stephanie,

 

Hearing this story made me feel like we are living in some kind of parallel universe. My son has reacted exactly the same way when I would come into his class. I finally started doing the same thing that you do, I just keep him home. I remember when it started. I kept thinking, how could my son not like this. Kids live for this! My theory, at least for my son is that he would unravel when I got there because he saw me as the "safe zone". I think he wanted to unravel most of the time but he would just keep it penned up and "hold it together" at school and then unleash at home. May not be the same situation for you (I hope) but here this is how it has gone.

 

I am glad that he like to trick or treat. My son went to about 8 houses tonight and then he became exhausted from all the retracing of his steps. He is much older than your little boy. He is 12 next month.

 

I do wonder how much of my son's behavior is PANDAS and how much is part of his personality. I am in denial that it is personality!!

 

I have not read your other posts, so I don't know your history with your son and PANDAS (I will read it after I write this).

 

The only advice I can give is be as aggressive as you can possibly be with your son while he is still so little. Get the Cunningham Lab tests if you have not already to see his CAM Kinase II levels. Hopefully you have a doctor that is open and educated in the treatment of PANDAS.

 

My son got PANDAS 5 years ago when he was in first grade and he was 6 years old. I saw dr. after dr. and begged them to treat him for PANDAS and none of them would or could or were willing to even investigate it. I can't tell how sad I am that I did not fight harder. I did not stop searching but I hit so many walls that I started to give up on the PANDAS diagnosis and kept looking for other causes of his issues and other diagnoses. Realistically though, there just was not as much information about PANDAS out there five years ago. No forum like this...

 

If I had continued to search harder I would have been able to get him on prophylactic antibiotics earlier. Each subsequent strep infection causes further damage and setbacks for them. At least now we are on a road to healing and recovery. I am sorry if it seems like I am on a "soap box" but I just feel so strongly about this.

 

Thanks for letting me vent...

 

Happy Halloween...

 

Judy...

 

 

We have had good and bad times with halloween. Don't get me started on the school halloween parties. Whenever I show up at school, he runs to me and cries and tantrums and wants to go home. I always sat there baffled as to why the other kids are participating in their halloween parties with their mommies by their sides and mine is falling apart. I eventually started keeping him home on these days so we didnt' have to suffer the stress and humiliation of these episodes!

 

What baffles me is that right now my son is on zithromax and I consider him to be in recovery mode, and he STILL fell apart the other day at his party. He had to be on my lap (he is 5). I was there to VOLUNTEER for heaven's sakes. The teacher kept looking at us wondering if she should help, but she was trying to run the party and she needed my help! Ugh! I just could have cried, I just kept thinking, "when will we have a normal life"? So I finally got him off my lap and went about helping with the party, but my son had to hold my hand the whole time...

 

Anyway, my son does like to trick or treat. I really think he likes the repetitive nature of collecting things, part of the OCD in some way. So it is right up his ally. Although, he is already getting anxious about the paint I am planning to put on his face!

 

This thread just reminds me that I am not alone!! Thanks! And good luck this year and next! Maybe it is pandas, combined with his personality in general!!

 

Stephanie

 

I am wondering if others have had issues with their PANDAS kids not wanting to dress up for halloween. It was always such a fun holiday for me growing up. Put on a costume and go get all the candy you can possibly ever want... Not for my son though. He has always struggled with Halloween. I used to think it was just him being afraid of the "scary" costumes, but he was scared of his own costume, even the cute little clown one.

 

I distinctly remember buying two really fun costumes one year. They were dalmation dogs from the Disney store, one for me and one for him. I put mine on and danced around to make him laugh but when I put his on, he dropped to the floor writhing and screaming. He could not rip it off fast enough.

 

Most halloweens he stays home with my husband and passes out candy. When he was younger I would bring an extra bag and take his brother and sister (twins) to trick or treat and explain to all our neighbors. I must have sounded so lame, "Uh excuse me, my son Ryan is a little afraid to come trick or treating, could I get a piece of candy for him". Most of the parents would either look at me with that "Are you crazy, what kid doesn't like halloween look" or they would feel sorry for me or him and give us a bunch of candy.

 

He is just about too old to trick or treat now anyway. Maybe he has a couple of years left. He is almost 12 though. I want him to go trick or treating, I want him to want to. I am going to make that one of my wishes, that by next year he will be recovered enough to go trick or treating, willingly and joyfully.

 

Maybe I could take one of those little orange UNICEF boxes where you collect money for the poor and cross out the UNICEF and put I.V.I.G. I need some serious sleep right now. I am punchy and feeling sorry for myself and my son!

 

I am so grateful for all of you on this forum...

 

Goodnight...