Jump to content
ACN Latitudes Forums

What do you tell your kids about this?


ajcire

Recommended Posts

I apologize for all my questions lately.

 

How much of this do you tell your kids? My ds is 7. I know he has no idea why I took him for a throat culture yesterday when he felt fine. I know he will wonder why I am giving him medicine later (the culture came back positive today). I have told my dd who is only 5 sometimes to just please be kind to ds because he is having a hard time. That is about as far as I have gotten into this.

 

What should I tell my ds? I don't want him to use this as an excuse when he is behaving poorly but I want him to not feel about himself when he can't seem to help it.

Link to comment
Share on other sites

His main symptoms that cause problems are his argumentativeness/short fuse. Last year it was severe anxiety at bedtime but that has calmed. He has a throat clearing and I have asked him if he knows whey does that.. if he feels he needs to clear his throat, needs a drink.. he said he just feels like he has to do it. But throat clearing doesn't really negatively impact any of us. He is particularly nasty to his sister during his episodes.

 

He does pay a lot of attention to what to me is trivial details. I never realized that could be part of ocd until reading here. It doesn't affect things but does make him seem a bit odd at times. He is very aware of time and schedules as well. His teacher noted that.. and said she thinks he photogenic (ack, not the word is escaping me.. that might be the wrong way of spelling or saying it) memory... because he remembers all the useless detail.

 

His teachers never noticed anything with his behavior other than that he can appear to be bossy and in charge (his attention to the rules and what not) so I haven't really gotten into any of this with them. They said he doesn't clear his throat at school like he does at home.

 

 

That's when I'm thankful this all surfaced when he was young. I feel if it happens again,hopefully I will be a bit more prepared. He turned 5 when PANDAS surfaced. He will be turning 6 this Sat.I don't think he remembers any of what happened over the last year.

 

During the bad times, my 8 year old believe it not was oblivious. I would tell him to leave the room or I would carry my PANDAS son out of the room if he was having a meltdown or acting up. The couple of times when my 8 year old questioned the OCD of my PANDAS son, I simply said he can't help himself. I aked him if HE ever felt like he NEEDED to do something and just couldn't help himself. He said yes. I told him that's what Josh feels a lot.

 

When Josh was having rages galore, I once asked my 8 year old if he had any questions about what was going on. Well, he didn't even realize something was going on. Once I tried to explain why Josh was getting away with more things. I said he was sick and it was doing things to his brain and he didn't realize what he was doing. I told him it wouldn't last forever.

 

Before school started this year, I sat down with the kindergarten teacher and explained Josh's "situation". I also said how I was suprised Ben was oblivious to everything. She said she's not surprised. At that age they really are still very much into themselves and their own lives and aren't quite aware of what's going on around them. At 7, I don't think he will advantage of the situation. Have you ever asked him if he's aware that he acts different sometimes or if he had questions?

 

What are his main symptoms? I'm sure I've read them in other threads but they really do all blur together with me. I'll probably ask you every time you post something:) Perhaps take the most prominent symptoms and find a book that explains it to children. For OCD, they have "Up and Down the Worry Tree'". Granted, it's PANDAS, not OCD, but it'll explain some of what is going on to the child.

Link to comment
Share on other sites

I am fairly open with my kids (pandas dd age 6- 5 at first episode, and non pandas dd age 9). I tell them that everybody has "fighters" in their body, called antibodies, that help them fight illness. I say that dd's fighters got confused, and instead of only fighting the strep throat, they bother her brain too. I tell her she has to "fight those fighters" when she is having ocd issues. She and her sister do understand, and for the most part are not freaked out.

 

When dd was having an issues about panties NOT being comfortable. I told her that I talk to a mom of a girl, with pandas, that age that had the same feeling (I did). ALthough she didn't want to talk about it too much, her eyes lit up when I told her this.

 

I don't want either of them to feel alone- which pandas does a good job at making the whole family feel.

 

I think kids know, absorb more than we realize. I would rather be able to frame their thoughts on the important stuff.

 

Read the father's post on pandasnetwork website, it is a good discussion of what this does to the family unit.

Link to comment
Share on other sites

I told my son we figured out what was making him do so many things and get in trouble at school. I told him he got a strep infection and the "soldier" that his body made to fight the infection got confused and started making his brain do things. He said, "see I TOLD you I was trying in school". He looked relieved we had finally figured it out. Occasional when he would do something he would say "the bug" made him do it. He even got so he could joke about it a little. When we went for PEX we told him his body did not understand he did not need the soldiers anymore so we were getting them removed. He would then be cured. He takes antibiotic so he won't get the bug again. He was seven when we told him and he seemed to both understand and be relieved.

Link to comment
Share on other sites

It could be anything. He goes into opposite mode... where no matter what is said he says the opposite. He also goes into so, I don't care mode. It's just in a tone that is out of character for him too. The other day this was the morning argument.. keep in mind he was on a schedule, running out of time to catch the bus... He was insisting on chocolate chip pancakes. I didn't have time to make pancakes but offered him the frozen blueberry ones we had, cereal, a bagel, banana, the usual. This was a strange argument from him, not typical. He insisted he would not eat if it was not chocolate chip pancakes and if it was not that he wanted chocolate pudding. I told him he couldn't have that for breakfast but I would send it for him for snack at lunch if he wanted. No.. his bus comes at 8:30. He was not even dressed at this point and when I told him he needed to get dressed he told me he would get dressed at 8:30 so that I had to drive him. I told him I would not be driving him. He insisted that he would not get dressed until 8:30 if he didn't have chocolate for breakfast. It was absolutely the most ridiculous conversation to be having with my 7 year old. Finally he came around, snapped out of it. Later that evening I was talking to him about it and he seemed to have no clue what I was talking about but was laughing at how silly it sounded when I described the scene from the morning. He gets irrational when he is in an episode... like if he doesn't get to have something he says things like "fine than I will never be able to have anything"... sometimes he goes to his room and puts the blankets over his head when he does this too.

 

I would definitely use the word irrational and argumentative to describe my usually rational easy going kid. To the unsuspecting onlooker he would just appear bratty.

 

 

When is he argumentative? If you say the sky is blue, does he fight that is is light blue and you were wrong because you were not exact?

 

My son showed symptoms of ODD (Oppositional Defiance Disorder) but they think it was a result of the OCD he was experiencing. In hindsight, they may have been right. Or at least some of it was a result of the OCD.

Link to comment
Share on other sites

When is he argumentative? If you say the sky is blue, does he fight that is is light blue and you were wrong because you were not exact?

 

This made me laugh (though not in a truly "funny" way)... that is EXACTLY the kind of thing my ds does. Try saying "It's 2 O'Clock" and he'll argue me into the ground because it's actually 1:59.

Link to comment
Share on other sites

LOL... .and your example with the time made me laugh because that is my ds's thing.. the time. There is no estimating in our house... it's all precise.

 

 

When is he argumentative? If you say the sky is blue, does he fight that is is light blue and you were wrong because you were not exact?

 

This made me laugh (though not in a truly "funny" way)... that is EXACTLY the kind of thing my ds does. Try saying "It's 2 O'Clock" and he'll argue me into the ground because it's actually 1:59.

Link to comment
Share on other sites

Our son had reached such a horrific state mentally with nightly hallucinations and completely irrational fears of swallowing paint, toys, etc...... that I think he was relieved to learn about why his brain was working in this manner. We have been completely open with him. He is actually quite cute about it sometimes. We were camping in my dad's Euro Van and our son woke up at 4:00 am and preceded to open the door of the van and go to the bathroom every 15 minutes. Our daughter got so frustrated with him and yelled "you don't see me going to the bathroom every 15 minutes. Our son raised his finger in the air and smiled the cutest smile and said "Keira, don't you remember - this is the PANDAS." I think he is comforted with the explanation of what is causing him to have scary thoughts and that we are working on healing him.

Link to comment
Share on other sites

When dd was having an issues about panties NOT being comfortable. I told her that I talk to a mom of a girl, with pandas, that age that had the same feeling (I did). ALthough she didn't want to talk about it too much, her eyes lit up when I told her this.

 

dcmom, This made me smile since dd8 has issues with her underwear every morning for a while now. We rushed to the store the other day before school when I had finally had enough. You should have seen us running into the store, me saying "OK, focus everyone, we are here for one thing and one thing only" and the kids hollered out "UNDERWEAR!". I bought her a size bigger and they seem to be doing well for her. She laughs at the size for her bottom, they are huge, but somehow they have not bothered her the past 2 days. I guess she prefers baggy panties! :(

 

Erica, we have gone with full (age appropriate) disclosure too. My dd really was helped knowing there was a reason she could not control herself. Before we learned about PANDAS she's ask why she felt bad or why she was afraid or worried all the time. Now she has something to refer to and we can talk about it easier. Plus, she's always around me, it's practically impossible to hide anything from her anyway!

 

Susan

Link to comment
Share on other sites

Vicki - what do you mean about the OCD presenting as ODD? My son usually shows symptoms as ODD and anxiety. The more I learn about OCD, it seems not to fit - he has more intense anxiety. I think this b/c he seems to react to something that is going on "outside" him rather than "inside" his thoughts. Of course, I am not inside his head. He's only 5, so it could also be how it presents for him at this age.

 

erica240 - my son is similar in that when i tell people something - like yelling, "butt,butt,poop" in the shoe store - they don't think it's that different from being an obnoxious boy. but it has that frenetic energy associated with it that is hard to explain unless you know the kid and see the behavior. it may have been on this forum but a while ago, I read a mom used the term "strepnoxious" and that so explained it b/c it is so different than just a regular obnoxious kid.

Link to comment
Share on other sites

When dd was having an issues about panties NOT being comfortable. I told her that I talk to a mom of a girl, with pandas, that age that had the same feeling (I did). ALthough she didn't want to talk about it too much, her eyes lit up when I told her this.

 

dcmom, This made me smile since dd8 has issues with her underwear every morning for a while now. We rushed to the store the other day before school when I had finally had enough. You should have seen us running into the store, me saying "OK, focus everyone, we are here for one thing and one thing only" and the kids hollered out "UNDERWEAR!". I bought her a size bigger and they seem to be doing well for her. She laughs at the size for her bottom, they are huge, but somehow they have not bothered her the past 2 days. I guess she prefers baggy panties! :lol:

 

Erica, we have gone with full (age appropriate) disclosure too. My dd really was helped knowing there was a reason she could not control herself. Before we learned about PANDAS she's ask why she felt bad or why she was afraid or worried all the time. Now she has something to refer to and we can talk about it easier. Plus, she's always around me, it's practically impossible to hide anything from her anyway!

 

Susan

 

dcmom and susan,

We have the same problem with panties and we have had this problem for a long time now. We have purchased every size and shape of underwear imaginable!! For our daughter it is the seam, that runs across her bottom that seems to bother her. She is constantly pulling them down so that it doesn't touch her. She is five and we have her in size 10 underwear. She will only wear one style/brand. Also, she will only wear dresses so that she has easy access to her underwear! The problem is that it is getting cold and she will have to wear leggings. This is going to be a battle because the leggings will now push her underwear up against her body!

 

Erica,

We have also told out dd as much as she can understand. Even though she was four when we had our first experience with pandas, she knew that she was not the same as she was before. We felt like she deserved an explaination and we also wanted her to know that she wasn't alone. She likes to hear stories of other kids' issues so that she does not feel so isolated. Her eyes definitely light up when she hears that she isn't the only one.

Link to comment
Share on other sites

hi MomtoT- you were the mom I was referring to :lol:

 

Julia is at the same place. She will wear panties with only dresses. If/when she has to wear leggings (or pants - ONLY for horseback riding) she will not wear panties with them. As I said somewhere else- I am not sweating the small stuff. I know we could work on this with therapy type interventions, but the thing is when she got better last spring, all this stuff went away. If she is happy, I am happy.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...