basic daily tasks? Cant or won't do!

[HopeinHIM]

My 10 yr old son was diagnosed with Pandas in May. It's a journey I know. His OCD is "purchase OCD". We have spent much money bc he rages often and the only way he calms down is if he changes his pattern of thinking to buying something!! He never had tantrums before! He curses now freely and simply refuses to brush his teeth or bath. If I bring him a cup and tooth brush he will reluctantly brush but rarely is able to do it himself. He urinates all over the seat when he uses the bathroom and never flushes toilet . He blows his nose also on anything he finds in the home. I tell him very calmly to please get a tissue and he just ignores me or cries and says he can't. If I bring this to his attention he becomes agitated and says I am yelling at him and I hate him. We have him on supplements (integrated Doc) and anti B's as per Dr T in NJ. He is less agitated and less raging but his Pandas symptoms seem different than many. They thought it was Bipolar before the blood work (not in our family). He was born with autoimmune issues as well with constant sinus infections so PANDAS fits! There is no form of discipline bc he starts his anger and raging so easily when we try and curtail his actions. He rules the house and it's like I am a prisoner. I attempt to get him to bed at a reasonable hour but ultimately he goes when he pleases. He was always a manipulative child but overall obeyed the house rules and never disrespectful. Good student and never a problem in school!! He will leave the house only when he wants to or if I bribe him with things. He tells me he just can't do much! Period! He watches TV so loud and ignores me when I tell him to turn it down. Getting him out of the house to doc visits or therapy is horrible much of the time!!! . He loves Karate so gets dressed easily and goes. If I tell him that we might take Karate away if he can't go the doctors, he rages for a long time. I have not heard of too many PANDAS kids being this obstinate. He was good kid a few month ago but its as if PANDAS has given him permission to rule the roost. We are patient and know that he is ill but need some guidance!!

[SSS]

YES,

PANDAS/ PANS kids are that obstinate. Yes, they will rule the house. Yes, when mother tries to point out correction (or common sense?!) in the midst of child's anger will get yelled at with

'you think I'm stupid' 'you hate me'

 

By the way, my girl is an angel at school. Yep, wins awards for good behavior.

 

I can't really give advice, except the book:

'The Explosive Child'

 

I will say, if I may, you may have to follow through with this child and stand up. Oh, it's brutal. And I'm a non confrontational introvert.

But by golly, I have pulled out my ugly face laid it down, rage be darned- I have a few rules that will NOT be allowed (hitting, hurting).

I could go on- it's very difficult.

You very well may need further PANDAS treatment- with different infection medications, IVIG.

[qannie47]

Pandas symptoms can become a pattern of behavior even after the flare is gone. The fact that he is able to "pull it together", like for karate or when something is purchased, or bribed is a big clue. Sounds a little manipulative. Pandas does not work that way. When a flare is still at the root, the behavior follows in some way in every set of circumstances..It is true that in another setting, Pandas kids can contain themselves to some degree, however, it will leek out to some degree, perhaps in a different way.

Edited June 25, 2014 by qannie47

[qannie47]

Pandas symptoms can become a pattern of behavior even after the flare is gone. The fact that he is able to "pull it together", like for karate or when something is purchased, or bribed is a big clue. Pandas does not work that way. When a flare is still at the root, it the behavior follows every set of circumstances..

[pr40]

our ds 6 has similar behavior. over time with two abx, we've seen great improvement. after he gets sick, he flares again, but flares are not as long as they used to be.

My guess would be that with long term abx, perhaps a combo. try to figure out which supplements work him and which don't. 23and me test can help you decide.

for us, it was also necessary to go gluten and dairy free.

then when he is capable of it, CBT might help you as well.

did you test for Lyme?

[smartyjones]

YES -- a pandas child can be that obstinate!!!!!!! I would heavily second SSS's suggestion of the book Explosive Child -- I am a huge fan of Dr. Ross Greene!

I would not expect the tips in the book to change your son's behavior immediately or even quickly -- but it will give you tips on how to interact with him to ease the problem without getting drawn into the drama. if you apply the concepts consistently, over time - it will have an effect on your child. but the initial successes will come from your interaction with him and will ease your involvement and angst over the incidents. you can check out livesinthebalance.com.

 

 

I would encourage you to learn about OCD and it's 'hidden' insidiousness. my son likely had the form of 'just right' OCD. not lining things up and making them equal - but that things were either 'right' or not. this was often hard to determine as it was 'right' in his brain only. there was a time I found it helpful to ask him if there was a reason, no reason or a reason he couldn't say. this seemed to somehow help us. also, the reason was often that it wasn't what he had planned or was expecting. I really don't think this was manipulative, it was troublesome to his brain. I term that my ds's exacerbation symptoms are 'Asperger like'. this was very helpful in working with him.

 

another thing I have found helpful is "Social thinking". you can google it. it was extremely helpful in putting things in terms that made sense to him and showed results.

 

hopefully, dcmom may post. she had a really good technique of sitting out until compliant -- kind of like time out, but different -- better to work with an older kid than traditional time out. if she doesn't post, maybe you can PM her.

 

Good Luck!

Edited June 26, 2014 by smartyjones

[ktdommer]

OMG- we have twins! My son can be so disgusting in all the ways your son is. Later he will be scratching his crotch in public. My son doesn't care and feels no pressure to conform. He doesn't wipe sometimes, doesn't flush other and doesn't wash at 19. Still doesn't brush and now refuses to go to dentist. I cant' make him but told him I would not be paying any of his dental bills from now on.

Obstinate is an understatement. I lost my son to sickness in April of 2010, got him back after 9 month of IV abx only to lose him again.

I have to believe he doesn't want to be this way. He can get it together for social things but they have to be of high interest. Physically he can't do much when out but will go. Very hard to explain to others.

Doing the tough love thing and following through. Kicked him out, he is living in a dump of a sublet, on foodstamps, shopped a food pantry and has 20 dollars a week allowance from his meager savings of birthday money etc. He will be broke August 1st and homeless on the 9th.

He STILL cannot do anything. No job interviews, no inquiring about a place to live, no cares. Couldn't clean up when living with parents and doesn't when living with roommates either. Cannot keep track of wallet, phone, bike etc...

If he could get part time employment he could have a car of ours and would have money. Two things that used to motivate him.

I do not know how to explain this to people. I'm doing what psych said to do and the only thing that is happening is I am losing sleep and he isn't taking any of his meds for Lyme or PANS. My husband says he has to hit rock bottom. Don't think this is what you say to a sick person. Doesn't seem right. Lots of guilt lately.

Isn't the behavior our sons have a sign of an illness? I had to lock up all meds and this year even locked my bedroom door. My purse had to stay locked up also. It was like a prison but what is the option?

Scary to think what August will bring.

I hope you get answers and that things turn around. I truly feel your pain. There are no easy answers in your shoes.

[MomWithOCDSon]

I will double-down on Ross Greene's "The Explosive Child" as, particularly with a kid your son's age, I think the techniques will work well. For my DS (12-14 at his worst PANDAS behaviors), the techniques in the book appealed to his desire to have some control over the situations, and to his need to feel as though he was being heard out, rather than just steamrolled or cajoled or bribed into compliance.

 

And thanks for the "social thinking" train of thought, Smarty! Haven't heard that specific term previously, but I think it will appeal to my family in a big way!

[SSS]

Oh Ktdommer, sending good thoughts and prayers--- hang in there----

 

I just wanted to add something to Original Poster:

My dd's OCD is also a changing idea on what she 'must have'-

there is no way in heck I am buying or purchasing her the item

she is currently obsessing on, no matter how crazy she is making me.

When it was bad at one point, I said: Ask Santa Claus! Put it on your Christmas list!

Well guess what, we've had stacks of compulsive Christmas lists written up (in July.)

No, I'm not mailing them! I tell her. The law is you can't send until November.

I think she refuses to acknowledge who Santa really is because she wants to keep her imaginary sugar daddy idea alive.

Anyway, stop buying him things. You'll need your money for PANS treatment.

[qannie47]

I have used Howard Glasser's approach, The Nurtured Heart Approach, Transforming the difficult child'. It works wonders. Not complicated either. He has a video that I suggest. I will admit, It worked best on my non Pandas child. For my Pandas child, it did help me to learn how to stay neutral, since any emotion would exascerbate him.

[SSS]

I read 'The Nurtured Heart Approach', too, probably from an old recommendation from qannie47.

It did open my eyes to a few things,

and I am now aware to speak more to my dd, draw her out

and notice and compliment her when things are smooth.

I'm not explaining it right,

but it's a salient point about helping their low self esteem,

build them up on 'good' attention, every day things.

[HopeinHIM]

OMG- we have twins! My son can be so disgusting in all the ways your son is. Later he will be scratching his crotch in public. My son doesn't care and feels no pressure to conform. He doesn't wipe sometimes, doesn't flush other and doesn't wash at 19. Still doesn't brush and now refuses to go to dentist. I cant' make him but told him I would not be paying any of his dental bills from now on.

Obstinate is an understatement. I lost my son to sickness in April of 2010, got him back after 9 month of IV abx only to lose him again.

I have to believe he doesn't want to be this way. He can get it together for social things but they have to be of high interest. Physically he can't do much when out but will go. Very hard to explain to others.

Doing the tough love thing and following through. Kicked him out, he is living in a dump of a sublet, on foodstamps, shopped a food pantry and has 20 dollars a week allowance from his meager savings of birthday money etc. He will be broke August 1st and homeless on the 9th.

He STILL cannot do anything. No job interviews, no inquiring about a place to live, no cares. Couldn't clean up when living with parents and doesn't when living with roommates either. Cannot keep track of wallet, phone, bike etc...

If he could get part time employment he could have a car of ours and would have money. Two things that used to motivate him.

I do not know how to explain this to people. I'm doing what psych said to do and the only thing that is happening is I am losing sleep and he isn't taking any of his meds for Lyme or PANS. My husband says he has to hit rock bottom. Don't think this is what you say to a sick person. Doesn't seem right. Lots of guilt lately.

Isn't the behavior our sons have a sign of an illness? I had to lock up all meds and this year even locked my bedroom door. My purse had to stay locked up also. It was like a prison but what is the option?

Scary to think what August will bring.

I hope you get answers and that things turn around. I truly feel your pain. There are no easy answers in your shoes.

[HopeinHIM]

Wow , that is hard at that age ! Thank you for sharing. I went out last evening a bought the Explosive Child book! In the past, we ran a very organized, peaceful and well managed home. I know this is the illness but you are all correct , he can control some of it. I am so freaked out about causing a rage (hours) that I comply to all. He is in so much emotional pain during these rages that I feel horrible if I can do anything to avoid it ,and so I(we do). He hits his head and more. As far as your son "NOT CARING" is he on an SSRI? certain meds can cause "emotional blightness" . While they are helping to being down the anxiety, they can effect the motivation and emotional portions of the brain. My oldest is on Luvox and he has very little emotions. If we lower it , he becomes too emotional. He had PANDAS when younger and we didn't know it. He was always being treated for strep and on low ssri so it kept him somewhat controlled I suppose. That was 10 yrs ago and PANDAS was even less know. Thank you all for great advise (and wise)

[nicklemama]

I can so relate. Honestly,getting rid of the root infection got rid of the behaviors.

[HopeinHIM]

Oh Ktdommer, sending good thoughts and prayers--- hang in there----

 

I just wanted to add something to Original Poster:

My dd's OCD is also a changing idea on what she 'must have'-

there is no way in heck I am buying or purchasing her the item

she is currently obsessing on, no matter how crazy she is making me.

When it was bad at one point, I said: Ask Santa Claus! Put it on your Christmas list!

Well guess what, we've had stacks of compulsive Christmas lists written up (in July.)

No, I'm not mailing them! I tell her. The law is you can't send until November.

I think she refuses to acknowledge who Santa really is because she wants to keep her imaginary sugar daddy idea alive.

Anyway, stop buying him things. You'll need your money for PANS treatment.

Yes, we did the Christmas list as well. That caused more anxiety bc it was too far away and he couldn't handle that .His Obsessions become so out of control that he can rage for hours over a pair of Labron James sneakers. He can pick up the next day where he left off. After several days of it, we buy the darn sneakers bc he is a mess and we are as well. I realize that is not the way to handle it but we need to function and it buys us a few days of peace. No ssri's work they only make him worse. He never raged before until we tried Prozac. Now its his new normal (3 times a week). This has subsided a bit on the suprax abx but not completely. We tried Abilify and it just added agitation! I have him on some relaxing herbs and they seem to help between rages. In between, he is a friendly boy and loves to be around people and laugh. But......say "NO"and he will frantically follow me around the house screaming for his object of OCD. OR write lists and lists of the object almost psychotic. This scares me more than any debt I go into over buying!! When he is calm , he will say he hates OCD and Pandas bc its going to make mom and dad broke!! So it's rages and OCD symptoms that are the most troubling with PANDAS. He shows no lymes . Coxsocci HHV6 and Pnummo cocci. Plus low IgG and IgA. You are all a great help. God Bless! I hang on to the LORD every moment bc I have nowhere else to go!!! Seeing Dr B July 8 and shooting for IvIg. His office is crazy busy now bc he has no partner. I can hardly ask his staff a question so I hope he is worth the trip!!