Please help..want to put DD is Psych ER

[FallingApart]

Our 7 yo DD last night said she wanted to kill herself and took a serrated knife to her forearm (the fleshy side). Then later she took the cords from her blinds and wrapped them around her neck. I was in bed bc I just had surgery. But DH yelled at her very firmly to stop and to get in bed. She immediately listened and did as she was told. Our ped thinks she needs to be evaluated with a psych exam. I agree. However, I do not want her near a hospital. I want her strep titers taken and for her to wait for a counselor who is familiar with PANDAS to see her.

 

For those of you who have been down this route, can you offer suggestions. A bit of background: she is definitely in a flare. This is the first time we have ever heard or seen her do something like this before.She is 7 and has had PANDAS since she was 3.

[T_Anna]

Has anything changes recently?

 

Can you reach her PANDAS doctor or is that the pediatrician?

 

T.Anna

[MomWithOCDSon]

Please know that I do not intend to in any way diminish the concerns you have for the health and safety of your DD. You know her best, so if your gut tells you that this is authentic self-harming behavior on her part, then you need to follow that. However, we had a similar experience with our DS in the depths of our PANDAS journey, so I come to your story with that in mind.

 

I have to wonder, how would a 7-year-old think to take a serrated knife to the soft side of her arm, or wrap her neck in cords? Is there any chance she's been given this sort of information . . . either visually or verbally . . . by interactions with other kids, TV, etc.? Prior to his PANDAS dx, at age 12, our DS was in a very bad way, so bad, in fact, that at the advice of our psych at the time, we enrolled him in a partial out-patient psychiatric program for "kids in crisis" at a nearby hospital. The idea was that he would attend the program from 8:30 am to 3:30 pm, participate in private and group therapy sessions, get medication management, etc., and then come home to spend his nights with us. We met with the intake person and made clear DS's issues, which at that time were solely general anxiety and ferocious OCD, and they told us they could help him.

 

Within 2 days of attending the program, I was questioning our choice. Not only was he the youngest in the program, but the other kids were a mix of substance-abusers, suicidal, self-harmers and defiant/aggressive types; he was the only one suffering from acute anxiety and basically afraid of his own shadow. One Day 3, following his attendance in the program, we had an appointment with our private psych. While waiting for the doc, DS caught sight of a long extension ladder in the atrium of the psych's office building, reaching up past the second floor of the two-story building, out through a hatch in the skylight roof (guessing that a maintenance guy was up there, sealing a leak or whatever). A few minutes later, DS was on the floor of the psych's office, in the fetal position, crying about how he didn't want to leave me and DH and that when he saw the ladder, he wanted to climb it, and because it was so high, he must've wanted to climb it so that he could jump off and kill himself!

 

Now, I don't know about your DD, but our DS had never before (and has never since) uttered a single suicidal thought. He has, however, since he could walk, loved high places and has climbed furniture, stairs and even ladders in our yard, just to see how high he could get before DH or I made him come down. So while the instinct to climb that extension ladder at the psych's office was a clear part of his personality and behavior pattern, the suicidal piece of it was not.

 

Come to find out, at the group therapy sessions in the program, a frequent and prevailing theme was "Have you thought about killing yourself today?" The question, in fact, opened every session! So DS sat there in a circle with all these other kids and heard one after another, truthfully or not, speak out and even elaborate upon all these suicidal ideations. And then he started to think, well, I'm in here in this program with these kids, so I must be like them, so I must be suicidal too!

 

Luckily, blessedly, two days later we discovered PANDAS, started an abx course, and withdrew DS from that ridiculously unhelpful program!

 

So, all of that is to say, our kids' brains are just not "right" during an intense PANDAS episode, and they have trouble with discernment, reality versus fiction, executive functioning in general, etc. And I also think that leads to their being incredibly impressionable because they literally can't think a "straight thought" on their own sometimes. My DS "absorbed" what he heard and had modeled for him, session after session, in this program, so I'm wondering if maybe something along the same lines might not have occurred with your DD?

 

Also, remembering that she's 7, is it possible she needed some attention and this was a guaranteed way to get it? If you're healing up after surgery, etc., perhaps she's feeling a little pushed aside as compared to the level of attention she typically commands.

 

Again, I don't want to diminish the potential seriousness of the situation and, at a minimum, I would think you want to get back to your PANDAs physician and perhaps get back on a course of abx or steroids as she very well may have been exposed, particularly if this behavior, and her behavior in general, has taken a dramatic turn of late. I do think, however, that it's possible she's not organically predisposed to self-harm, but that she's acting it out based on some external factors?

 

Hang in there!

Edited July 9, 2013 by MomWithOCDSon

[mama2alex]

Our ds talked about suicide and picked up a few knives when he was at his worst. Its extremely scary. I would first safety-proof the house - all knives and other sharp tools put away where she can't reach; take the blinds down or cut off the cords. If she's a runner (our ds would try to run out into the street) you can get an inside latch that you put up too high to reach so she can't open the front door. If there's a lock on her bedroom door, I would remove it.

 

In terms of treating, what's her status? Is she still being treated for Lyme and Bartonella? If you've stopped, they could be making a comeback. Our son has both and once we started treating for these, the suicidal stuff calmed way down and eventually disappeared. Can your pediatrician swab her and check strep titers, since she seems to know about PANDAS?

 

I don't think a psych ward or the ER are the way to go. At 7, I think you can keep her safe until you get this flare calmed down. I think being alone in a psych ward would just add stress and you would lose control of treatment. You know this beast, you just need to figure out your next step. Sounds like she's been off regular IVIG's for a couple of years? Were they helping? Would it make sense to try them again?

 

Also, I saw you posted about Clonidine. Are you still giving her this? Could this be causing the thoughts? Just asking, as I don't know anything about this med.

[PowPow]

Mom with OCDson gave you great advice. I adm not sure a counselor us what you need.

How have you treated pandas in the past? Abx, steroids?

This sounds like a very scary, though not suprising PANDAS flare. Do you have a good pandas doc you can get to asap?

I would steer as clear as possible of psych er, the chance of them providing real help is nil.

Make your home safe, do not leave her alone, and get on the right PANS tx fast.

Edited July 9, 2013 by PowPow

[Hopeny]

I'm so sorry my previously well adjusted happy daughter had suicidal thoughts/ideations at age 8 from lyme/strep. its very worrisome. We had a fairly quick response with doxyciycline in abating the thoughts. Amoxicillin actually seemed to accelerate them. Could you share where you are located? Its important to say that your daughter needs to be watched 24/7, do you have support at home to help?

[JoyBop]

I can honestly say I've been there. My 7 yr old DS became suicidal while on Prizac and prior to the discovery of PANDAS. We were lucky enough to have a psychiatrist evaluate him for three hours. She was the one who figured out pandas and sent us for a strep test. My son didn't know any good ways to get the deed done but did stab himself with pencils. I think if he were older and wiser to the world we would have had a different situation on our hands. I didn't want to take him to a hospital but at the same time I was prepared to to save his life. I quickly researched my options and got advice from local docs as to the best possible facility just in case, which was over an hour away. Fortunately we didn't have to do that bc he didn't have a viable lethal plan.

 

Here's what I did do for 10 days while the abx were taking effect. He slept on an airbed in my room so I knew ge was safe and ge felt safer. I went through the house and took away anything harmful. I spoke daily with his psychiatrist and never let him be alone. School was involved as well and there was a plan there.

 

I think you should get your child evaluated ASAP by your doctor to screen him to make sure he's not really going to hurt himself. If your dr has coverage, call Now. If your mothers intuition tell you otherwise, follow your gut and go to a hospital, just know on advance the best place to go.

 

If it helps to hear, as DS got much better after taking him off Prozac and on abx. You should ask about the Clonadine as that could cause suicidal tendencies as well.

[NancyD]

My heart goes out to you, FallingApart! I agree with so many of the suggestions here but I will offer a little different perspective...for what it's worth from someone who has been on this journey for over 15 years. I put this in the "I wish I had known back then what I know now" category.

 

My DD17 is about to be discharged from a residential program halfway across the country. Although we speak daily I have not seen her in almost 3 months. I miss her terribly but she is getting really excellent help where she is. Her primary diagnosis is PTSD -- so much of the trauma she suffered stems from having PANDAS, Lyme, et al her entire life.

 

For years I expressed concern to her therapists about the psychological damage from the violent rages, OCD, tics, and many other symptoms she suffered for so long. I was told not to worry.

 

Our children are exposed to trauma day in and day out. We just don't always recognize it because they appear to bounce back quickly. The bullying; difficulty in making or keeping friends; days, weeks, or months of missed school and activities; constant visits to the doctor; sleepless nights or unable to sleep in their own bed; not wanting to be touched or feeling overwhelmed at the slightest bit of stress; the remorse they feel after destroying the house or abusing a sibling, friend, or parent; years of invasive tests and treatments; taking so many pills a day; constant discussions about their illness; wishing they could live a normal life; and the list goes on.

 

In addition to looking for and treating the underlying infections I would encourage you to deal with the psychological pain your child feels now. A good therapist who has expertise with children and trauma (there are lots of good ones out there) can help your child deal with those feelings that often get swept under the carpet for so many years.

 

The psychiatric facilities in this country are a mess and so many of our children have experienced further trauma at these facilities. My DD included. We had to go halfway across the country to find a good facility that could handle her complex medical condition and could give her the tools she needs to deal with the trauma and other co-occurring issues (social anxiety, OCD, and eating disorder). Thank goodness we found it, but oh how I wish we could have dealt with the trauma so many years ago!

 

If I could save just one child even 20% of what my DD suffered...

[4Nikki]

I wish i had answers, this so sucks.

 

We put in. Backup plan. DD Dr. Found the best phyciatric hospital for DD. But to get her in she has be admited under a 5150. This is bevause she has a develoental disability and needs one to one care. DD's case manager for regional thought the only way to do dial 911 bit we found put it is actually the phyciatric emergency team that actually does the process. We called them in and they made an assessment. Thier recommendation was to admit her. We wanted to make sure she would go to the right place and not to the nearist place. So we are working out the details with her case manager after putting the PET in tpuch with DD case manager. Now the case manager is providing help after being made aware of how the system works, it sounds really stupid and it is.

[nicklemama]

So sorry to read this. DS was suicidal on Celexa at age 6. He'd had no exposure to the idea. This was before diagnosis of PANS. We took him off Celexa. Not seen suicidal behavior since. I'd start with examining what abx she is on. If its not treatment dose, I'd get her on treatment dose ASAP. If she's on treatment dose, I'd do some labs and switch abx. Consider Lyme and company.

 

I would stay away from the psych ER or any ER as long as possible if you feel you can keep her safe. We've been to the psych ER. They basically tried to pin his issues on us and when DS was openly truthful about his behavior and they'd talked to his therapist and psychiatrist, he was sent home without so much as a suggestion, other than to let his psychiatrist know he was inflexible and rigid in his thinking. In other words, he was ASD.

 

I understand how scared and upset and worried you are. Try and hang in there.

[mdmom]

My son was suicidal at age 9, 4 years before he was properly diagnosed with PANDAS/PANS and multiple infections.

 

My mother's instinct told me to keep him safe, check in with the family doctor and seek out therapy. We chose not to take him to an ER because I knew it would cause him trauma.

 

We also reduced his stress and removed sharp objects from his reach.

 

We found out that the suicidal ideation (again, not knowing it was PANS-related) was most-likely OCD related. It was an obsessive thought that he might kill himself. He even had a plan. It was scary and confusing time for our family.

 

I agree with others here that an ER will not get you the help you need. In fact, it could cause more damage and most likely her medical needs will not be addressed in that setting. PANDAS kids are medically complicated but in traditional medical settings are treated often only as psych cases.

 

Try dosing ibuprofen (the max dose) around the clock, every 6 hours to get your daughter through this flare.

 

Hang in there -

[momcap]

I completely agree with your own thoughts that she should have a psych exam, and that you don't want her near a hospital. My thoughts - if possible pursue her PANDAS more aggressively and/or rule out other infections if you haven't already. Meanwhile a psych evaluation and GOOD psych help may go a long ways. Emphasis of course on GOOD.

 

My DS9 started with suicidal talk when he was only 5!!! We were shocked, confused, and overwhelmed. He wasn't even old enough to understand death, but he knew he didn't want to be alive. He would say things like, "I'm going to stand in the highway until a car hits me so I can be dead", or "I'm going to climb up on the roof and jump down on my head so I can be dead." At that age we didn't even watch the news in front of him. He was VERY sheltered. He had no clue about typical methods of suicide or that sometimes people did kill themselves. He just didn't want to be alive and in his 5-year-old mind had connected the things he knew - like Mommy saying to stay away from the highway and not to climb too high, etc. He was in a brutal flare and life was truly unbearable. My advice - I would take your DD very seriously. She's crying out for help and this is serious stuff. Fast forward to a couple of months ago and I'm rushing DS to the E.R. with his wrist cut open so deeply I can see his tendons. He's nine years old, so don't let anyone tell you it's not serious because of your child's age. It happens. Our E.R. experience was an absolute nightmare. Hopefully you can keep her safe at home while pursuing treatment options. My heart goes out to you.

[mama2alex]

Oh my God, Momcap. I'm so sorry. You are in my prayers.

I completely agree with your own thoughts that she should have a psych exam, and that you don't want her near a hospital. My thoughts - if possible pursue her PANDAS more aggressively and/or rule out other infections if you haven't already. Meanwhile a psych evaluation and GOOD psych help may go a long ways. Emphasis of course on GOOD.

 

My DS9 started with suicidal talk when he was only 5!!! We were shocked, confused, and overwhelmed. He wasn't even old enough to understand death, but he knew he didn't want to be alive. He would say things like, "I'm going to stand in the highway until a car hits me so I can be dead", or "I'm going to climb up on the roof and jump down on my head so I can be dead." At that age we didn't even watch the news in front of him. He was VERY sheltered. He had no clue about typical methods of suicide or that sometimes people did kill themselves. He just didn't want to be alive and in his 5-year-old mind had connected the things he knew - like Mommy saying to stay away from the highway and not to climb too high, etc. He was in a brutal flare and life was truly unbearable. My advice - I would take your DD very seriously. She's crying out for help and this is serious stuff. Fast forward to a couple of months ago and I'm rushing DS to the E.R. with his wrist cut open so deeply I can see his tendons. He's nine years old, so don't let anyone tell you it's not serious because of your child's age. It happens. Our E.R. experience was an absolute nightmare. Hopefully you can keep her safe at home while pursuing treatment options. My heart goes out to you.

[lfran]

I am so sorry. What a terrible thing for any parent to go through.

[philamom]

Sending prayers to both of you!!