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Since starting all of these antibiotics, my child has a little more focus but she is so focused that when I say "no" to any of her thoughts, War World lll breaks out!!! So my day is running anywhere she wants to go and it is literally killing me. I am out of energy. We run to target and Walmart all hours of the night, buy tons of clothes that she ends up not liking the next day and then we return. This happens every day!!! Her anxiety about her life being wasted away is over the top and she wants every waking hour filled with things to do. I am not kidding. I am exhausted. I decided with treatment I would do whatever it takes to get her through this, but I can't do it anymore. The doctor wants me to keep her on all of the abx. and just keep adding things to calm her, but nothing seems to stop her from being more aggressive with the abx. (they make her thoughts more powerful and the need to follow through on whatever thought she has and she is unstoppable) It is really not that I am a weak parent. You CAN NOT say the word no to her. She was not like this when the abx. weren't on board. Can anyone relate to this? Any what would you do?? Thanks!!! IVIG is not an option because we don't have the money for it and insurance is not paying.

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I totally understand that issue. I have one of those children where saying "no" is just not a smart option (at least during an exacerbation). It sounds like the abx may be creating some die off your child is not handling well. One thing I would suggest is trying some detox protocols aways from the abx to see if it helps her out at all. Detox with lots of lemon water throughout the day and try Diatimacious Earth maybe at bedtime on an empty stomach or you could use charcoal capsules to soak up the toxins in the body. I hope this helps her.

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I agree with putting together the piece, sounds like a die off reaction.

 

I am not judging so please don't take this that way, but when I read your post my first thoughts were "omg! Stop!" It sounds like ocd is not only running your daughter's life, but it's running yours too :( again, please understand I also have a child with severe ocd, and at times severe odd behaviors, and I know that sometimes saying NO just isn't worth it. Maybe start slow, and start saying no to some little things.... "I'll take you to the mall, but we're only staying for an hour, and were not buying anything today" -- I don't know the answer obviously, but I doubt that giving in to all of her obsessive thoughts is helping her anxiety anyway....When my dd is flaring or in exacerbation, if its not one thing, its going to be another that she's focusing on or obsessing about, so I've learned to give in only when it's at least somewhat convenient for me. Shopping for and buying clothes that she won't even wear isn't helping anyone! Give her a little ERP-- "I'll take you tomorrow, but not right now".

 

People with ocd feel better when they have more control too. Instead of saying no, give her some options- I don't know what she feels "fills her time", but I would find a few things that don't include running around and spending money, and offer her those choices or nothing at all. You have to start somewhere, no one can live with what you're doing right now.... Is your dd in therapy/CBT?

 

I would also talk to her doctor about her behaviors and back off some of the abx, or decrease dosage. It may be that her body can't dump the toxins fast enough. I just fund out that my dd's antioxidant function is tanked, so even with the abx working, they're causing problems at the same time :(

 

Good luck-- I feel for you, I really do. You have to stay strong..... One of you has to stand up to the ocd monster.

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what if you try to set the rule in advance, like no trips to walmart, no new cloths this week or until she does something you need her to do?

or, you can give her a limited budget and she can do it until she runs out of money and that's it?

I mean, try to anticipate what she may be driven to do and warn her in advance of where the limit is.

 

we have the same problem, though not as sever case, and I am saying this from that place: set some limits somehow or OCD is going to make your life unlivable.

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Keep in mind that if this is Pandas related, your child has lost her ability to be reasoned with. She has lost cognitive assessibility. When my child was in the thickest grips of a flare, there was NOTHING I could do. Nothing.

 

I switched my goal from trying extract reason or desired behavior to "anti-stress" therapy. Many times this worked.

 

Joint compression therapy worked well: Just below each joint, for example the knee, slightly push the joint in and out over and over, about 10 times. Move onto the wrists, each finger, ankle. I also would gently pull on each finger to create a stretching feel. I would do this with his arms and legs: holding at the ankle (imagine the stretch going all the way up to the hip) With the arms: create a stretching feel by holding onto the wrist and pulling with constant tension. They should feel the pull all the way up to their shoulder. Do this whole body therapy for ten minute increments. Sometimes I would have to do it 3 times in a row....

 

I also did back massages with aroma therapy. Hot baths. Think DESTRESS.

 

With my son, I believe that the dopamine surge was sending him into a fight/flight mode and these kinds of things helped. It would often result in him feeling drowsy from the relief....

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I agree Quannie, when my dd is in a flare and out of control, nothing I offer as reward or threaten as consequence will make a bit of difference, so I stopped doing that some time ago. But I do agree with setting limits as Pr40 suggested. There is a difference between limits and reward/consequence. Compromise is okay. However, I would keep in mind that the more you give in to, and support, obsessions of a person with ocd, the stronger and more demanding they become, as trinityibella is surely experiencing. It's a vicious circle..... Take her to Wal-mart, she feels satisfied for a minute, next she's asking to go to Target, get home from there, she's asking to do something else. The hardest thing to do is going to be your best bet-- suffer through the consequences of saying no, at least to a small part of it at first, or you'll find ourself spiraling right along with her. :( And address the cause too-- if that's the abx than if it were me, I'd decrease regardless of doc's recommendation-- you can't go on like you are with no relief. That's not treatment.

 

How long has this been going on?

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I needed to read his thread today. We spent most of the day dealing with my son who was agitated and off - we are entering week three of post IVIG, and also on clindamycin which may also be aggravating. We said no to a movie which features a lot of conflict and he went into a rage hitting, kicking, then groaning for an hour then bawling. He rest of he day he was volatile, attacking sometimes, wanting love another time.

 

Bearae your point on limits vs carrot/stick makes sense. Sometimes we tend to give in as we have two PANDAS kids that are ruling mom and dad's lives. So what do you do with the rages? What is the appropriate response for attacking siblings or parents? We just kind of muddle through it currently. We do restrain him sometimes but that seems to further anger him as he is scared to be in any situation where he feels trapped, even brief hugs can scare him.

 

Quannie I will try the massage.

Edited by dasu
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I wish I had an answer re: rages :( while they are fewer and further between now (thank God) my dd still has them. I attempt to set limits for that too. With everything I've got, I keep myself in control, and my voice down. If she starts hitting me, I tell her that it's okay to be angry, but that I can't allow her to hurt me. If she continues, I bring her (drag her :( ) into her room. I tell her again, "if you keep hitting me, I'm going to shut the door. Do you want me to shut you in here?" She will usually, very angrily tell me "you stay here" with the meanest I'll-rip-your-head-off look. Then it's on her-- she stops hitting, or I shut her in her room. I have to hold the door closed to do this.

 

Because this has become so routine in our sea of chaos, she will now usually go in another room and "stay away" from me once this "conversation" starts, which is fine-- she'll eventually settle (after many angry words, etc.) but as long as I end the hitting part (which lets face it, can only be tolerated to a point before you lose control yourself and that doesn't do anyone any good) than I feel like I've gotten somewhere I guess.

 

Dd doesn't like feeling trapped either, (scares her too) which is why I give her the choice. "You can either stop hitting me or I'm going to shut the door". She can't usually "reason" or take control of herself, but I've found that by making this the routine response, it's made it a little bit (stress the word little) easier.

 

I've been trying to find some stress relieving techniques, but when dd is raging or flaring, you can't even approach her with anything like that-- she doesn't care. I wish I could try some massage or something on her! How do you try that when raging???

Edited by beerae22
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Oh trinitybella,

We lived that world several months ago. It's "purchase OCD" . In other words, it is not the renewed energy from the antibiotics so much as it is a different form of anxiety/OCD. The anti B "may" be making her anxious and this is how it manifests in her at this time OR she may be flaring as one mom mentioned. When our Ds was OCDing over clothes and sneakers, it was almost hysterical each day so there was no logical talking with him or negotiating. One more important thing! Have you checked co infections???? Once we started treatments for Bartinella with a cocktail of three anti B's, it stopped!! We spent over $5000 this summer on skateboards surf boards sneakers and more that he HAD to have or he would become almost psychotic. Therapy did not help us when he was at such high anxiety. He would calm for a day and then start a new purchase obsession. Each morning I would wake up and be fearful of what the day would bring. We started Bactrim/Zith and Amox. That is what our doctor recommended but seek professional help and know that many of us out here feel your pain. Now that he is a bit calmer, we can begin therapy. By the way....SSRI's made it way worse and caused many more problems for us. Explore your options carefully. Much prayers are going your way. Hang in there. Big cyber hug.

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