2 weeks into Augmentin....

[fightingmom]

Wow! Great!!!!!!

 

I think us PANDAS parents need to look at things week by week vs, moment to moment or even day to day! Its definitely a rollercoaster ride

 

It is.

 

Though, I can't keep him on ibuprofen forever so I feel like I'm just buying time. Argh.

[airial95]

I've just skimmed some of the longer posts - so if I repeat anything - forgive me.

 

On the long term useage of ibuprofen - our pediatrician has us dosing our son 2x a day since the end of January. I asked him about damaging effects of long term use, and he told me that the critical thing is not to exceed the maximum daily dosage for his weight. That the real damage comes from giving too high of a dose over a long period, but if we use the appropriate dose we should be fine.

 

He started us on the daily use - prior we were only using it in critical situations - after he read some "obscure" (his words) paper that said that they were seeing some rise in inflammatory markers in PANDAS kids prior to a strep infection. His theory was maybe if we can control the inflammation long term - we can cut the tide of strep (I think we at like a bazillion infections over 2 years - slight exaggeration - but not much ). It didn't work, he's gotten strep 2-3 more times since then (we're up to 4 infections since the start of the year, cant remember if we started the ibuprofen before or after #2), but it has made his symptoms with these new infections much more manageable.

 

So if it makes you feel any better - we're doing daily ibuprofen on the doctor's orders!!

 

On another note, my husband and I had been a pretty good team leading up to our PANDAS nightmare as well. We recently started marriage counseling because we saw things going down a bad path and wanted to get in front of it. It has helped us immensely!! It was amazing to hear how differently we viewed how to "help" our son, and our different approaches could actually be complementary - but we didn't really know what the other was thinking/feeling/doing about things. It was an eye opener for us both. We found a counseler that has evening hours, so we use it as an opportunity for a date night as well - we go to counseling and then out for dinner/drinks after to continue the discussion and have some adult time. It has been wonderful for us. Just sharing our experiences.

[fightingmom]

Thank you, airial95!! This has been very helpful, both the reassurance about the ibuprofen and the upswing with your husband. We considered marriage counseling, but have been so overwhelmed with doctor appointments and therapists and family counseling with my son that the thought of another freaking appointment just is so unappealing especially with the lack of results over the last 2 years. Though that was BEFORE we knew what we were dealing with was PANDAS/PANS. Like I mentioned, we have done family counseling, etc. already but hasn't made much difference because it's just the 3 of us, and until we can get my son's behavior under control we can't do much else -- additionally our family therapist was also my son's therapist. She recently suggested residential treatment for him since he didn't seem motivated to change -- I sent my son out of the room and tried to explain to her that we were headed down the PANDAS route and she nicely suggested I was wasting my time. So, that's the end of her!

 

Maybe, now that we have eliminated her from the picture, we could try something like you described with a different counselor. Making it into a positive/date night event sounds great. I really like that idea.

 

Last night my husband read through some threads here and I read a few things to him that I thought sounded very similar to my son. He agreed it sounded JUST like him. I feel like he finally had an "aha" moment. Not sure if it's because we had such a big explosive weekend in our house that we both realized this is going to end badly if we don't make changes, or if it's because we spent some time together at dinner that didn't revolved around this stuff and maybe it just centered things a little bit.

 

Been getting some good advice from all of you. Thanks so much for sharing!!

Edited April 3, 2012 by fightingmom

[StillHopeful]

Hi Fightingmom --

 

The way this behavior was described to me was that my son was obsessing over the computer and so if we took it away or physically took the keyboard, etc... it would cause him anxiety because he was obsessing. I have found that when I say a strict NO to certain things (or if a teacher at school does) he can obsess over it and then become over reactive. When I try to come up with another consequence I am still getting my point across and we avoid all the other behaviors. I have had to learn to parent him differently over the past year or so. It is not easy because sometimes I feel like he is "getting away" with things. However, the peace we have had over the past several months has been awesome. We try not to sweat the small stuff. It took a while for my husband to get on board because he doesn't live it as much as I do but now we are usually (not always) in agreement. By the way, my son has not been diagnosed with anxiety just ocd and I agree with you about how anxiety doesn't need to be fear based.

Edited April 3, 2012 by Ngold24

[EAMom]

She recently suggested residential treatment for him since he didn't seem motivated to change -- I sent my son out of the room and tried to explain to her that we were headed down the PANDAS route and she nicely suggested I was wasting my time. So, that's the end of her!

 

 

good riddance!

[fightingmom]

Hi Fightingmom --

 

The way this behavior was described to me was that my son was obsessing over the computer and so if we took it away or physically took the keyboard, etc... it would cause him anxiety because he was obsessing. I have found that when I say a strict NO to certain things (or if a teacher at school does) he can obsess over it and then become over reactive. When I try to come up with another consequence I am still getting my point across and we avoid all the other behaviors. I have had to learn to parent him differently over the past year or so. It is not easy because sometimes I feel like he is "getting away" with things. However, the peace we have had over the past several months has been awesome. We try not to sweat the small stuff. It took a while for my husband to get on board because he doesn't live it as much as I do but now we are usually (not always) in agreement. By the way, my son has not been diagnosed with anxiety just ocd and I agree with you about how anxiety doesn't need to be fear based.

 

Yes, I think there is an element of OCD to this. Not sure if the OCD causes the anxiety or vice versa. For instance, last night I brought up his laundry. He was on his computer and his clothes are easy (mostly hooded sweatshirts and the like) so while he was sitting 2 feet from his closet door I offered to hang them up for him (because if it doesn't get done right away his clean clothes get tossed on the floor, and then he complains that they will have fur on them, or whatever and has a mental breakdown when getting dressed in the morning -- you'd think he'd make the connection to not toss clothes on the floor and this won't happen, but he hasn't). Anyway, he freaked out and was NO, I don't want you touching my stuff. I'll do it. So, I again asked him to do it now so I could put the laundry basket away and so the clothes wouldn't get tossed on the floor -- he was not upset I was asking him to do it now -- but rather over the fact that I was going to dare touch his closet. He gave a little resistance to put the clothes away at that moment, but as soon as I hung up one sweat shirt he jumped up and took everything out of my hands and told me to get away and he would do it himself.

 

This to me seems like OCD, but of what? -- he's not hiding anything in the closet, there is nothing I am going to see. There is no special way he is organizing his clothes, that I am doing wrong, yet, he seems to have a MAJOR, MAJOR aversion to me touching simply hanging up a few sweatshirts for him. Why? What would make him react this way? It's bizarre. I can't put my finger on the underlying "threat".

[EAMom]

[

Yes, I think there is an element of OCD to this. Not sure if the OCD causes the anxiety or vice versa. For instance, last night I brought up his laundry. He was on his computer and his clothes are easy (mostly hooded sweatshirts and the like) so while he was sitting 2 feet from his closet door I offered to hang them up for him (because if it doesn't get done right away his clean clothes get tossed on the floor, and then he complains that they will have fur on them, or whatever and has a mental breakdown when getting dressed in the morning -- you'd think he'd make the connection to not toss clothes on the floor and this won't happen, but he hasn't). Anyway, he freaked out and was NO, I don't want you touching my stuff. I'll do it. So, I again asked him to do it now so I could put the laundry basket away and so the clothes wouldn't get tossed on the floor -- he was not upset I was asking him to do it now -- but rather over the fact that I was going to dare touch his closet. He gave a little resistance to put the clothes away at that moment, but as soon as I hung up one sweat shirt he jumped up and took everything out of my hands and told me to get away and he would do it himself.

 

This to me seems like OCD, but of what? -- he's not hiding anything in the closet, there is nothing I am going to see. There is no special way he is organizing his clothes, that I am doing wrong, yet, he seems to have a MAJOR, MAJOR aversion to me touching simply hanging up a few sweatshirts for him. Why? What would make him react this way? It's bizarre. I can't put my finger on the underlying "threat".

 

It could be contamination fears. My dd has done that in the past, gets mad b/c I (or someone else, it depends) had touched certain items...

[fightingmom]

Hmm, maybe. Several times a week before school he will notice something on his shirt or pants that makes him so upset he will go upstairs and change. Then he gets worked up about all his clothes being dirty. Now, they don't seem dirty to me. He even accused my washing machine of being broken and not cleaning his clothes right. I told him my clothes were coming out clean so that didn't seem likely. Though, if he's worried about them getting dirty, wouldn't he stop tossing them onto the floor? I don't get it.

[StillHopeful]

I agree with EAMom. Sounds like contamination. That is what my son has. He won't let my husband cook. If anyone one leans near his food or stands too close to his plate he freaks. I can't touch his computer screen. Can't sit on the bed. Etc.... Most of it involves his eating utensils. No silverware, only disposable cups and cutlery. He throws away brand new cups, plates and plastic cutlery if he sees any kind of spec on it. Costing me a fortune in paper goods.

 

The reason you don't get it is because it is not logical. It's OCD.

[fightingmom]

 

The reason you don't get it is because it is not logical. It's OCD.

 

Very good point!

 

Is it possible for it to be contamination issues but not be with other things? Like he could care less about plates or cups, or his toothbrush that he just chucks on the bathroom counter, etc. But his clothes and his room seem off limits. Generally, is very tidy WITH HIS ROOM only --he will step over a wrapper on the floor or leave his crap all over the house, but his room is set up how he wants. Though in the midst of the worst exacerbations his room will become a disorganized mess. Papers all over, backpacks dumped out, clothes everywhere. Like he goes from hyper organized and very specific about every little detail to complete pig.

 

Hmm, sort of makes sense I guess, because this is when he won't be able to focus on homework, do math, remember things, etc. so maybe everything becomes a big "mess" at these times?

Edited April 3, 2012 by fightingmom

[StillHopeful]

It is absolutely possible to be concerned about contamination with certain objects or places and not others. For instance, my son couldn't care less if his shirt was dirty or if he had cat fur on his shirt. He mostly cares about germs on his utensils and food contamination. He doesn't care if the bathroom is dirty or his room is messy or any type of sloppiness. He is not a recurrent hand washer. I found this article and thought you might like to read it.

 

http://www.ocdchicago.org/index.php/experts-perspectives/article/stronger_than_dirt_ocd_and_contamination/

 

If your son is willing, maybe you should take him to a therapist that specializes in OCD and he/she could do ERP with him. My son would not cooperate and said he was just fine the way he is. So far he is coping on his own but I am hoping one day he will realize that some of his behaviors are holding him back. I have to say though that lately (in the past month) things are getting much better. He used to have to knock on things and had more rituals than he does now.

[fightingmom]

That article was very helpful! Thank you. And, thanks for reversing the roles and pointing out that your son could care less if his shirt was dirty or had cat fur on it. That greatly helped me put into perspective that it can be just very selective things and not a generalized condition.

 

His father has/had many OCD tendancies, many of which had to do with cleaning and specifically laundry -- interesting with my son's issue with clothes. It's weird how sometimes "thinking outloud" or on a forum -- in this case, can make light bulbs go off.

[EAMom]

That article was very helpful! Thank you. And, thanks for reversing the roles and pointing out that your son could care less if his shirt was dirty or had cat fur on it.

 

yeah, 'cause the cat is not contaminated! Yay kitty!

[fightingmom]

That article was very helpful! Thank you. And, thanks for reversing the roles and pointing out that your son could care less if his shirt was dirty or had cat fur on it.

 

yeah, 'cause the cat is not contaminated! Yay kitty!

 

LOL. How can I decontaminate our kitties, I wonder?

[StillHopeful]

Vacuum them

 

(Totally kidding!)