Can anyone relate?

[P_Mom]

Okay....brief recap. Of my two PANDAS sons...my younger has always been the one I worry about...although he is doing well....you always worry. Anyway, he got his tonsils out in November and the mild remaining "stuff" went away. He got through 3 illnesses without any flairs. He just got another cold this week (last URI was a month ago)..and I am seeing mild stuff creep up. No crisis...just the mild things he had before.(I am thinking bucket theory) A year or so ago, while he was in the tub, a giant thousand legger fell from out of nowhere into the tub right in front of him. Of course...this was startling/upsetting. It would make me scream! For a bit after that happened...he would always make sure I checked for bugs before he got in the tub. He would ask me a couple of times if I was SURE there were no bugs in the tub. I would always check and always reassure him. Well.....he is doing it again. Tonight, he got in the tub no problem, but, then told me he was worried there were bugs in the tub. I first assured him there wasn't. He was still worried, so, I asked him what would happen to him if there was a bug in the tub. He said it would bite him. I just told him it wouldn't and left. He was okay for a few minutes, and, just while I was starting to get something done that I needed to...he was yelling for me to come upstairs. I asked why from the bottom of the steps and he wouldn't tell me. I told my ohter son to go see what was up because I was busy. He wouldn't tell him, either...just kept yelling for me. I got aggitated because I just needed a few more minutes to do something...but, since he was yelling for me...I went upstairs and while I was going up I told him it better be important. When I got there I asked what was so important. He sunk down into the bubbles so his little face barely showed. He, in a little voice, says..."but, mom...what if something ELSE gets in the tub?" I was still so irritated (time of the month isn't helping )......that I just said...."well then, I guess it will just gobble you up." I turned and walked away. Funny thing is, he didn't say a word or complain once after that.....he happily splashed around for the rest of his bath without yelling for me or asking questions. I felt bad and apologized afterward. But, maybe it was a good thing?

[Bill]

Yes - can relate.

 

I'm not qualified to say good or not but I think it's a good thing! Your son needs reinforcement that he need not worry about that any more. Heck, most non-OCD folks would freak a little if something fell in the tub with them.

 

BTW - I gauge where my son's OCD is sometimes by seeing how gross I can get in conversation without him reacting in an OCD way. (Hey - don't judge, it's a guy thing!) There was a time when he could not separate reality from the ridiculous when it came to his contamination OCD.

 

bill

[eljomom]

Well, I have to say that you made me laugh....with your PMS comment

But on a more serious note, normally, I would say this is normal kid stuff. My almost 13 yr old dd (not pandas) still freaks about spiders...if there is one in the bathroom, she doesn't want to shower in that bathroom for a few days. But then again, my pandas dd7 will freak about things that i KNOW are b/c of pandas.....so I guess this doesn't really help you...in a normal circumstance, I wouldn't BLINK over that situation. But now that I am the tic-police, ocd-police, sep. anxiety- police, drawing-police, I would just keep a note in the back of my mind...

[P_Mom]

Thanks guys.

 

Bill...interesting way to guage the ocd. I'll have to think about that in terms of how I (or my husband) can do that with my son in a way to apply it to him so we can see if there is "something" going on that is more than we think. And you ae right...some non-ocd people would freak in this circumstance, too.

 

 

Eljomom....yep....4 years ago I wouldn't think twice about it...but, that has changed. I am not too concerned right now....I'll see how long it lasts and if anything else creeps up. He did easily get into the tub and took the bath....just that incidence in the beginning.

 

 

I know that many say not to give into OCD if at all possible. I agree with that but I know sometimes it is impossible. My son is basically well so I think he can handle it. I am thinking this is a PANDAS related OCDish thing because of his cold. (and he wanted me to hang around with him in his room until he feel asleep... classic.) It worked well tonight with the tub/bug thing. I would try before when he would show his OCD stuff to not give in...but, I never did it in such a blunt way. Before, I wouldn't give in in a kinda "reasoning" sort of way. I'll have to try the blunt approach more often and see what happens. We'll see if he does it at next bath time.

[P_Mom]

. double post

Edited March 4, 2011 by P.Mom

[staeprice]

My DD got huge anxiety/fear about the sound of the bathtub draining in kindergarten. For months she would freak out if we tried to drain the tub with the bathroom door open. The phase eventually went away and then during a different PANDAS episode about a year later the fear came back. She also got scared of "ghosts" in the shower, and one time she thought wet grass was bugs crawling on her and she wouldn't touch the grass for over a month. We have found our daughter has irrational fears linked with her OCD. They are extremely worse during and following an episode then we go back to our normal every day fears of clothing... I'm hoping this will decrease with age. She is also on Prozac which I think may be helping but we have not had another episode since she went on it so time will tell I suppose. I can definitely tell you that you are NOT the only one. And it's so hard when our kids convince themselves of these irrational fears. You can reassure over and over and try to talk them down from the ledge but sometimes it just takes time....

 

We have also been using a great workbook for kids called "What to do When Your Brain Gets Stuck" and my daughter has been using the strategies for little blips that come along.

Edited March 4, 2011 by staeprice

[thereishope]

After everything we've been through we notice every little "oddity" that happens. To be honest, yes, even little things can be a foreshadowing of all you know what breaking through, but it can also be part of being a kid. I think that's one of the hard parts of trying to find a normal life agian and not worry is remembering that all kids, even non-PANDAS kids, will worry, will be scared, will do things that would send up red flag for a PANDAS parent.

 

The fact that he overcame it so fast is a great sign. Now, if continued to worry, be anxious, freak out, demand to get out of the tub....that would be a different story.

[PhillyPA]

I think you handled that situation like a genius. Well done!

[momcap]

Our therapist taught us to ask, "What would be the worst thing that could happen?" Instead of dismissing it, we were taught to address it head on. Then we were supposed to talk about what else might happen, and which option was most likely. I don't know if this ever helped, but it made some of the ridiculous fears seem funny. "Ya, a giant bug might drop into the tub and gobble you up." Saying it out loud makes it sound even more ridiculous, and actually helps. Then again, when DS's anxiety is REALLY bad, we don't dare offer suggestions.

[Guest pandas16]

I think you handled things fine, but I learned the same thing that momcap said at behavioral cognitive therapy. When I was at the very worst of my illness, (completely incapacitated) I was deathly afraid of chewing gum. I was afraid to the point that if I saw it stuck on something or under something I would go into a complete state of awful anxiety, curl up in a ball and refuse to move wherever I was. This was problematic as gum is everywhere. At behavioral cognitive therapy, the therapist literally made me chew gum, spit it out and put it on a tissue. At first, it was so traumatizing that I had to sit all the way at the other end of the room because the anxiety from it was so awful. However, as time passed and I talked with the therapist she helped me realize that all my fears were illogical. I was 9 at the time. I was eventually able to go from curling in a ball on the other side of the room to actually touching the gum without a problem. Gum still bothers me a little during allergy season but I can now just put those bad thoughts aside because I remember touching the gum in her office and I remember it not harming me.

 

I would say from what I learned to maybe buy fake plastic spiders and put them in the tub. First he'll probably run away. Go through all the awful things that spiders could do and then show him that with each awful thing (worst a bite maybe) it can be cured with an antiseptic and a band aid. As he gets more comfortable, have him eventually sit on the plastic spider so he knows what a bug would feel like. It might take months until he gets to that point. It took me about 6 months to finally touch gum. ---------Just my thoughts

 

My case in 98 was EXTREMELY severe, so what I needed was beyond what my parents could offer me at home.

Edited March 4, 2011 by pandas16

[P_Mom]

Thanks everyone for your replies and suggestions. There have been no bug phobias, reassurance questions, etc. since that one bath this past week. Just a glitch, I guess...a kid being a kid. Does the PANDAS paranoioa ever go away?

[Guest pandas16]

It kind of turns into anxiety as an adult, at least for me.

Edited March 6, 2011 by pandas16

[P_Mom]

It kind of turns into anxiety because as an adult, at least for me.

 

 

 

 

Oh......I was referring to the PANDAS paranoia a parent feels. I see you were coming from the perspective as a PANDAS sufferer. Understandable.

I do think, (from a PANDAS sufferers perspective).... Dr. K is right when he says that the anxiety sticks...but, I hope it stays minimal/manageable.

[thereishope]

No

 

Does the PANDAS paranoioa ever go away?

[Guest pandas16]

Well it kind of depends- after I was originally treated I was completely symptom free, no anxiety- no symptoms. I was 100% except during allergy season and times of stress. (Straight A student etc)

More or less, I was symptom free for 11 years until I got a mycoplasma infection in college and also repeat sinus infections. During the actual infections, I probably went back down to 50% functional-(couldn't leave my dorm for a week straight) but abx (levaquin) got me back to around 95%. It was odd because I never responded that well to abx before. At the moment I'm between 90 & 98% because of not taking care of myself in college. No one looking at me would know I have PANDAS, but I'm seeking treatment again to get back to where I was originally.

 

As a child my symptoms presented themselves as uncontrollable tics and OCD, now as an adult my symptoms first present as anxiety and if they get really bad THEN that's when the tics and OCD come in. Anxiety is like a BEEP BEEP BEEP WARNING you're about to lose control of your brain and I know to take advil and/or go to the doctor. Boy, this disease sucks.

Edited March 6, 2011 by pandas16