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borninthesouth

ADHD daughter with severe anxiety and OCD-- thoughts?

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I guess this is part vent part do you have any suggestions or thoughts.  I have a 12 year old that went to public school until 3rd grade.  The 3rd grade teacher and our doctor at the time thought she was ADHD, but the school would not run any further tests because they said "she was not far enough behind to be tested."  I also decided that I didn't want to do medication.  The school's attitude made me re-think public school and begin homeschooling for 4th grade.  

 

We did 4th, 5th and 6th and things went pretty well.  She has struggled some and it was an adjustment for me, but I thought we were doing ok.  This summer her world just crumbled.  She has always been a hand washer and not one to like "dirty" things, but about a month ago it all went out of control.  She began changing her socks up to 10 times a day (if she walks in a part of the house she deems dirty she has to change her socks), she can't handle friends over or going to someone else's house, she is washing her hands raw, sometimes if something upsets her she has full on melt down howling tantrums for hours, she used to be a huge animal lover and now won't touch any animal, she can't let things she deems "dirty" touch her-- she dropped her charger on a "dirty" place on the carpet and tried to wash it and when I told her it wasn't safe she tried to throw it away, won't allow anyone on her bed or in her room, she takes forever to get anything done because of the hand washing, she jumps from place to place around the house because of the "dirty" spots on the floor, she can't open the car door or close it because it is dirty and she will only sit in one spot in the car, because the other spots are "dirty" and list goes on...

 

We started seeing a therapist and I am hopeful he can help and I assume that things take time, but I am confused about his methods.  My take has been to let her work through the difficult situations to be able to overcome and see that this isn't how she can live a functional life.  He wants me to do what she needs done so that she doesn't melt down and then he will work on getting her to let go of the fear.  The problem is it really bugs me to have a 12 year old that I have to get socks for and open the door for... It is making it so I can't do things with my other kids because she is so needy.  And I don't ever know what will set her off.  I think I need meds at this point.  I wake up dreading each day and I can't imagine what homeschool will  be like in a few days when we begin.  The therapist says she can't do public school right now and give her a start time and finish time and if she doesn't get the work done then oh well.  My over-achieving self cringes at the thought of not finishing our work for the day, but then a part of me says-- maybe she needs laid back right now.   

 

Anyone have a kid with severe anxiety?  Any thoughts?  Please be kind.  I love my kids and am giving my best, but homeschooling 4 is stressful-- especially with ADHD and another with dyslexia.  

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Huge, huge hugs. This is a tremendously hard situation. I am sending you positive vibes and tons of hugs and a lot of understanding.

 

I have a local friend who is dealing with something incredibly similar and has for several years. Her daughter is now 17. The anxiety is a big issue but it is the severe OCD that has been hardest to cope with. It has been a very hard several years. I do not want to discourage you by saying that but I want you to be prepared for the possibility that this may take a significant amount of time and effort to help your child function and the reality is she will probably always deal with this at least a bit in some form or fashion.

 

Bottom line, you are going to need a support system for yourself while you try to help her. This is not behavior that can just be retaught. This is a very complex break down of critical systems within her body. She cannot help her reactions. She has now hit puberty, which I have been told is when many of these underlying issues tick up considerably because of hormone changes. She is going to need a LOT of help, possibly even medication, certainly time and tremendous understanding.

 

You are going to need a support system for her but also absolutely yourself. Maybe counseling as well. My friend ended up putting her younger son in school to lessen the stress on him and to give her a chance to help her daughter but still have some time for herself to recover each day. Depression and anxiety in the mom became a real concern. She did not reach out right away. She was afraid people wouldn't understand. She thought people would blame bad parenting and think her child was just spoiled. Sadly, in some instances, she was correct. However, there have been many that do understand. We formed a network to support her, give her breaks, get her son to and from school, etc.

 

Please seek support for yourself as you seek help for your daughter. She genuinely cannot help her reactions and this will not be an overnight fix.

 

Hugs and best wishes.

Edited by OneStepAtATime
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I am familiar with some extreme anxiety - not as extreme as you are saying but I have talked many a kid off the ledge.

 

So in a way I see what the therapist is saying.  In reality he wants to reprogram your dd's brain but it is too busy shooting off warning signs and dealing with the chaos to take in any new messages.  She needs to be dialed WAY back so that she can hear/digest this new info. 

 

An analogy - you have a fear of spiders.  You don't get over that fear by having someone place 20 spiders on you while they say calming relaxing things like "Spiders can't hurt you.  What is the worst that can happen. What are you worried might happen."    You are more likely to get over it if WHEN you are calm someone talks to you about spiders - what are you worried could happen?  And then explains how illogical your thinking is.  Finally getting you to the point where you can look at a picture of spiders, on and on.

 

It's the same logic here she is too overwhelmed by her fear of germs to makes sense of anything logical right now.

 

I say indulge her as well.  reduce the day to day chaos in her mind.  Allow some of the steam out of the can.

 

ETA - and yes get support in place for yourself also because this is a 24/7 job for you and no one can expect you to be amazing at this 100% of the time.  Hugs!

Edited by mermaid'smom
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Thank you for the understanding and recommendations.   I am so very grateful. Some days I am not sure I can make it through when she is having a bad day.  It is so very overwhelming to hear the screaming and crying for so long.  I will have to look for a local support group.  I will look up PANDAS and thank you so much Mermaid's mom for the explanation.  That was so much better said than what the therapist said.  

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Thank you for the understanding and recommendations.   I am so very grateful. Some days I am not sure I can make it through when she is having a bad day.  It is so very overwhelming to hear the screaming and crying for so long.  I will have to look for a local support group.  I will look up PANDAS and thank you so much Mermaid's mom for the explanation.  That was so much better said than what the therapist said.  

 

I bet if you indulge her you will see a positive effect start to take place...she will dial down...then that will allow you to dial down your stress.  Then that fresher less stressed version of you will have a positive effect on her.  That will allow her to maintain some of the calm...on and on.

 

Take some of the lighter fluid out of this situation and I think you will see some of the flames simmer down.

 

But absolutely find yourself and nourish yourself.  Go for walks.  Put on headphones when things start to spiral.  Take long baths.  Find someone to vent to.

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If there is sudden onset OCD, please consider PANDAS. There have been a few threads recently. WhIle it may have been at a lower level, and then it escalated relatively suddenly (an exacerbation), that would be enough for me to recommend at least checking out this possible angle.

 

 

Can they do a test?  She does have some of the symptoms, but how do I know which it is?  She has always had some small OCD things, but they snowballed into crazy overnight.  

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You've gotten some great advice already.

 

I have not dealt with real OCD, although my dd had some OCD-like behaviors when she was small. So I'm not sure if this is entirely on target.

 

Still, for what it's worth, I'd urge not assuming that your daughter is able to change her behavior.

 

This is in reference to your phrase about letting her see that this is not how she can live a functional life.

 

Maybe I'm misunderstanding your meaning here, but it sounds to me as if you're trying to treat this behavior with logic.

 

I'd start from the assumption that this behavior has a biological origin and is beyond your dd's control. It is probably making her miserable, and I bet she wishes it would stop as much as you do. I suspect it's beyond rationality and self-control.

 

While we don't have OCD here, we have absolutely had self-defeating behavior that came straight from the brain stem. It was fight-or-flight level stuff that had nothing to do with rational thought. In that sense, I see where the therapist is coming from.

 

Rational responses aren't possible when you're dealing with brain-stem-level behavior. I think calming down first is absolutely necessary.

 

I would also want to investigate PANDAS at this point, and if that doesn't provide a path forward I would absolutely pursue medication as a way to help calm the overload your dd is currently experiencing, so some therapy might have a better chance to help.

 

I would also be looking for a professional with significant experience in this area. In my experience most therapists may be great at talking clients through the stresses of everyday life, but most do not have experience with this level of need. You are dealing with biology; you need medical knowledge of OCD. But maybe the practitioner you're dealing with has that experience; I hope so.

 

Finally, with regard to school, please give your daughter and yourself as much grace and patience as you would if she had experienced severe, visible physical trauma. Her trauma is just as real.

 

Huge hugs. I know how hard irrational behavior is. Having it start suddenly in a 12 year old must be overwhelming. I hope nothing I've said sounds critical; I just live with huge regrets about the years when we were dragging our dd to the neighborhood therapist and thought if she tried hard enough she could change her behavior. In hindsight, I'd always err on the side of assuming she is already trying as hard as she can, and this is beyond her control.

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I agree with the above posts. Seek professionals with experience with this for adolescents if you can. And for yourself and your family treat this almost like she had a traumatic brain injury or a severe infection in her brain. This is almost certainly biologically based. If she is anything like my friends daughter she wants to change this even more than you do.

 

I had not thought of PANDAS but I agree, especially considering this was that sudden seek out that possibility.

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Have you looked at the kids' section of the OCD foundation website

 

What type of therapy does your dd's therapist practice? The "let go of the fear" aspect gives me pause. OCD is not a result of subconscious fears, but an extreme overreaction to normal stimuli. The person suffering from OCD is well aware that their behavior is bizarre, but all of the anxiety alarms in the brain are firing at once. Cognitive-Behavioral Therapy (CBT) and a specific subset, exposure and response prevention (ERP) are the "gold standard" treatments for OCD. Brain Lock by Schwartz is a good book for explaining the process. 

Edited by mellifera33
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Have you looked at the kids' section of the OCD foundation website

 

What type of therapy does your dd's therapist practice? The "let go of the fear" aspect gives me pause. OCD is not a result of subconscious fears, but an extreme overreaction to normal stimuli. The person suffering from OCD is well aware that their behavior is bizarre, but all of the anxiety alarms in the brain are firing at once. Cognitive-Behavioral Therapy (CBT) and a specific subset, exposure and response prevention (ERP) are the "gold standard" treatments for OCD. Brain Lock by Schwartz is a good book for explaining the process. 

 

 

I have.  But, honestly I am still trying to process all the information.  I will ask the therapist what treatment he is using.  Right now he trying to find her triggers.  

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You've gotten some great advice already.

 

I have not dealt with real OCD, although my dd had some OCD-like behaviors when she was small. So I'm not sure if this is entirely on target.

 

Still, for what it's worth, I'd urge not assuming that your daughter is able to change her behavior.

 

This is in reference to your phrase about letting her see that this is not how she can live a functional life.

 

Maybe I'm misunderstanding your meaning here, but it sounds to me as if you're trying to treat this behavior with logic.

 

I'd start from the assumption that this behavior has a biological origin and is beyond your dd's control. It is probably making her miserable, and I bet she wishes it would stop as much as you do. I suspect it's beyond rationality and self-control.

 

While we don't have OCD here, we have absolutely had self-defeating behavior that came straight from the brain stem. It was fight-or-flight level stuff that had nothing to do with rational thought. In that sense, I see where the therapist is coming from.

 

Rational responses aren't possible when you're dealing with brain-stem-level behavior. I think calming down first is absolutely necessary.

 

I would also want to investigate PANDAS at this point, and if that doesn't provide a path forward I would absolutely pursue medication as a way to help calm the overload your dd is currently experiencing, so some therapy might have a better chance to help.

 

I would also be looking for a professional with significant experience in this area. In my experience most therapists may be great at talking clients through the stresses of everyday life, but most do not have experience with this level of need. You are dealing with biology; you need medical knowledge of OCD. But maybe the practitioner you're dealing with has that experience; I hope so.

 

Finally, with regard to school, please give your daughter and yourself as much grace and patience as you would if she had experienced severe, visible physical trauma. Her trauma is just as real.

 

Huge hugs. I know how hard irrational behavior is. Having it start suddenly in a 12 year old must be overwhelming. I hope nothing I've said sounds critical; I just live with huge regrets about the years when we were dragging our dd to the neighborhood therapist and thought if she tried hard enough she could change her behavior. In hindsight, I'd always err on the side of assuming she is already trying as hard as she can, and this is beyond her control.

 

 

Thank you for your words.  They hit me the way they needed too.  I have always been a push through and get over it kind of gal and it is hard for me to view this as uncontrollable.  I am trying to wrap my head around that and much as the behavior itself.  I think I am getting there though.  The more I look at this as an illness the more she views me as a someone trying to walk her through.  But, then I doubt myself  because she keeps embracing new behaviors.  I also have a friend that treated children with OCD for years that said don't indulge her whims and now the therapist is saying something very different.  

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Unfortunately it can get complicated quickly. It is controversial - how controversial depends on where you are (more accepted on the coasts than in the middle of the country). An exacerbation can be caused by strep or another infection (can of worms!). An immune system that isn't working properly can be at the root though sorting all this out is not easy, can take time, etc. There are a few tests to start with, first a swab for strep and then strep titers, though that's only the tip of the iceberg. Finding a provider can also be an enormous challenge. There is no one path to wellness but several - will depend on the individual. Helpful forums here.

 

Particular things I would look for that would point me in this direction sooner rather than later: recent known strep infection; possible strep exposure with unknown/untreated infection; mycoplasma pneumonia; lyme; history of immune or autoimmune issues; dilated pupils on especially bad days; frequent urinary urge, especially at bedtime; bad handwriting, even moreso if there was a change in handwriting coinciding with the OCD symptoms (can you compare old schoolwork?). The snowballing overnight would be a big huge giant red flag IMO.

 

FWIW, my ds always had a low level of sensory stuff going on, motor issues/bad handwriting/slow processing speed, always some sort of anxiety lurking, and we could never quite put our finger on whether there was a real attention issue. He'd been through numerous ed psych evals before the sudden onset of the OCD. He tells me he thinks he had obsessions much earlier but he wasn't acting on them (compulsions) or at least wasn't making that obvious to the rest of us. But, when the big time OCD started at age 11, it was obvious to all, and it happened virtually overnight, though it was probably ramping up for a few months and I just didn't pay attention because he had a long history of weirdness, if you will. We are still trekking down this long path though if in the end we don't see improvement, we will end up attempting the delicate balance between attention and anxiety meds. In my ds's case, he has an immune deficiency and we are currently ramping up that treatment (IVIg). One reason we have avoided SSRIs so far is that there is an increased risk of problems in pandas patients (something like 13% chance of overreacting/mania).

 

ETA, trust me when I say how I totally get the frustration of having to, essentially, treat a 12 y.o. like a baby. Boy do I get it. Oh, do I ever get it..... (I really should not drink so much coffee - I ought to be eating chocolate instead) it may help to remember that the anxiety overrides logic.

I feel like we need to eat an entire chocolate cake together.  :)

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We knew it was time to look at meds for DD when her anxiety started negatively impacting her quality of life (not just stressing us out as parents).

 

It sounds to me like you are there and then some. I would get her in to see a child/adolescent psychiatrist ASAP. 

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If there is sudden onset OCD, please consider PANDAS. There have been a few threads recently. WhIle it may have been at a lower level, and then it escalated relatively suddenly (an exacerbation), that would be enough for me to recommend at least checking out this possible angle.

 

I was going to recommend looking into PANDAS/PANS as well. There is a PANDAS forum that was mentioned to me just a few days ago: 

 

http://latitudes.org/forums/index.php?showforum=17

 

We have been going through something similar with my 7yr old son for about 4-6 weeks. It was a sudden escalation of things that we considered 'quirks' that he dealt with relatively okay, along with sudden severe anxiety and anger/mood issues. We had him tested for strep on Sunday and his culture came back positive on Tuesday. We've started antibiotics and have a consult with a child psychologist coming up. Still waiting for his blood work to come back, and trying to figure out our next steps.

 

Good luck.

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Sometimes, if it isn't PANDAS, you need meds to get the anxiety/OCD calmed down enough to treat with CBT.

Edited by RootAnn
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You asked if they can do a test for PANDAS ?

But rather, it begins with identifying the symptoms?

Where the first criteria, is a sudden change. While their may have been some milder OCD previously, their is a sudden change.

Where you wrote: 'She has always had some small OCD things, but they snowballed into crazy overnight.'

So that this sudden change, is the primary criteria for a diagnosis.

Along with a range of other symptoms, that can vary.

But the diagnosis is made on the symptoms.

 

Though what is happening behind this?

Is that it has been identified that 'some bacteria', can use the sinuses as entry point to the brain. Where it uses the 'olfactory tract' to enter the blood stream.  At a point where the blood feeds into the brains 'Basal Ganglia'.

'The basal ganglia are associated with a variety of functions including: control of voluntary motor movements, procedural learning, routine behaviors or "habits" such as teeth grinding, eye movements, cognition and emotion.'

 

'Currently, popular theories implicate the basal ganglia primarily in action selection; that is, it helps determine the decision of which of several possible behaviors to execute at any given time. In more specific terms, the basal ganglia's primary function is likely to control and regulate activities of the motor and premotor cortical areas so that voluntary movements can be performed smoothly.[1][4] Experimental studies show that the basal ganglia exert an inhibitory influence on a number of motor systems, and that a release of this inhibition permits a motor system to become active.'

 

Where a key role in relation to OCD, is the Basal Ganglia's role in inhibiting motor responses. Enabling decisions to be made, about a motor response.

So that what we are looking at, is a loss of the Basal Ganglia's ability to inhibit motor responses.

What the Basal Ganglia does, is to enable us to choose a motor response.  

Rather than react as reflex response.

 

But PANDAS has been renamed as PANS?

As initially it was identified that the Strep bacteria was the cause.

Though it has since been recognized, that other types of bacteria in the mouth and ears?

Can cause these same symptoms.

So that the S in PANDAS, which stood for Strep.

In PANS, it stands for Syndrome.

With a recognition that various bacteria can equally cause these symptoms.

 

 

Though a most crucial factor here, is that 'bacteria' have been identified as the primary cause.

As opposed to any 'virus'.

Where the crucial difference, is that with bacteria. An antibiotic can either inactivate or kill of a bacteria.

Whereas with a virus, what can only be done? Is to try and limit our immune system response to it.

 

What has been found with PANDAS and PANS.  Is that after taking appropriate antibiotics?

That the OCD symptoms significantly reduced.

This highlights that is has 'impaired function', rather than 'caused damage'?

As this reduction in symptoms, wouldn't occur, if 'brain damage' had been done.

 

I particularly note this, as you wrote that this sudden change has only occurred recently.

What hasn't been reported, is whether this reduction in symptoms. Occurs if their has been a long delay before taking the antibiotics?

As it could be speculated, that a long delay could result in physical damage?

 

Though coming back to the tests?

This could be approached in 2 different ways?

One way, would be to do tests for Strep and a range of other bacteria?

But this could take a long time, as different bacteria are tested for?

Though this will only show the 'presence of bacteria'.  Not identify it as the cause.

 

The other more immediate approach, could be to start with a course of anti-biotics?

Looking for any observable changes?

If so, tests for the relevant bacteria can then be carried out.

 

I'll add a link to a page that talks about PANDAS and PANS:

 

https://iocdf.org/pandas/

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Thanks all!!  I have another appointment with the therapist today.  After reading up on all of your suggestions I did figure out that the therapist is using Cognitive-behavioral therapy.  I think I am going to work on medication to go with the therapy at this point and have her tested for strep.  This was such a big a help... I really can't thank you all enough.  I feel much more hopeful today and like we can work through things.  

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So glad you feel hopeful and responses on here may help. Love the wonderful people here. Hugs, best wishes, and keep us updated if you can. We are rooting for you and your family here on the LC board. :)

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I believe myself to be OCD and I was diagnosed with anxiety. Probably have both but the pyschiatrist that did my eval did not let me elaborate much and dismissed OCD. Anyway, I am a hand washer but not nearly as bad as I have been in the past. This may be the "wrong" answer but this is what I would do.

 

Go outside with her to the car. Let her do it or you do it --- wipe down the door handle with a disinfectant wipe or squirt of cleaner. Whatever. Then tell her it is clean now and not to worry.

 

Let her mop the hallway or vacuum the floor. Tell her it is fine. See if she can swallow this enough to stop grabbing new socks.

 

I have to do crap like that to myself. I have to convince myself something is "good enough" and then try not to think too much about it.

 

When I was a kid I refused to wear my favorite shirt. My mom could not understand why I thought it was dirty as I had not worn it since she washed it. But it had touched a "dirty" area. Looking back no, I doubt any therapist would tell my mom to wash it for me. But I stopped wearing it. I wish my mom would have either talked to me, dug for the answer and convinced me it was fine or if necessary washed it again so I would wear it, not open my drawer and feel negative thoughts every time I saw it. I know, I sound crazy. Just being honest.

Edited by heartlikealion
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Thanks all!! I have another appointment with the therapist today. After reading up on all of your suggestions I did figure out that the therapist is using Cognitive-behavioral therapy. I think I am going to work on medication to go with the therapy at this point and have her tested for strep. This was such a big a help... I really can't thank you all enough. I feel much more hopeful today and like we can work through things.

Do the throat culture but there is also a blood test for the antibodies that you will need. The blood test will show if there was a strep infection relatively recently, even if no active infection is found in the throat.

 

We went through this testing when my DD had a sudden behavior change but with only mild OCD symptoms. She didn't test positive for strep but for recent mono antibodies.

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