Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Aspen

Ideas for dealing with separation anxiety?

Recommended Posts

My 10yo daughter has major maternal separation anxiety. It came on almost overnight after 2 bouts of strep, and multiple concurrent exposures. Titers are currently very high.

 

She had some other PANDAS type symptoms, which have slowly improved after 45 days of antibiotics, but the separation anxiety has not budged much.

 

She has missed several weeks of school, won't go to her best friend's house where she would go almost daily, won't leave my lap to play soccer, basketball, or go to parties. All of which she did easily prior to strep.

 

We are seeing a counselor for CBT, and are listening to anxiety reduction audio tapes. She still says repeatedly that she must see me at all times. She thinks I will leave and never come back, even though this has never happened in the past and I have never threatened to leave. Her fight/flight response is on high alert so pushing her to take steps is extremely difficult. She fights back and would never do that prior to strep. She desperately wants to get back to doing all these things, but she says she just can't do it.

 

We have tried easing her back in this week, but the moment of separation is extremely difficult and she says she can't concentrate in the class because she is worried that I may leave when she is at school. She panics and asks to go to the nurse almost the instant she goes in the class.

 

Does anyone have any advice on steps that I can take to help resolve this? What may have worked for you, and how long did it take!?

 

Thanks.

Share this post


Link to post
Share on other sites

My daughter has the same issue, among other things. We have basically stopped trying to use reason, as you noted, it doesn't impact the part of the brain that's driving the fears. Some of these fears may also come from intrusive thoughts as well. It actually appears to make it worse, our daughter asks us to stop talking about symptoms because it increases her symptoms. You may find some success with anti-inflammatories. Valium has helped my daughter as well. We are going to try risperdal next as the current flare is crazy.

 

What antibiotics did you use? My daughter went on augmentin immediately after strep diagnosis at onset of PANDAS and symptoms, which were quite severe, gradually declined until we were left with decreased appetite, poor sleep, separation anxiety and irritability. We saw a specialist who did clindamycin and rifampin there was a dramatic change after five days.

Edited by dasu

Share this post


Link to post
Share on other sites

Take small, baby steps first at home. Start by leaving the room to go to the bathroom alone for 1 minute, then 2, then 3, and continue to increase until you can be gone from her sight for while at home for longer periods. Then start the process at school, same thing. Start by taking her to class, leaving her there for 5 minutes, once she is okay with that, then go for 10, etc....until she's able to stay at school longer and longer periods. Initially, you'll still be at the school, (make sure she knows that) but just not within her sight. It's a long process, and terribly hard because you feel like you're intentionally torturing your child, but it does work.

 

Another suggestion that our therapist gave us is to use humor, we are a very sarcastic family and use humor often, so it made sense. My daughter often seeks reassurance that I love her, sometimes asking dozens of times an hour. We give her a limit on the number of times she can ask that day (initially it's high, like 5 or 10, then we slowly come down to eventually 1-2), each time she asks, we reassure her and then remind her how many times she has left to ask. If she exceeds the number, we're supposed to calmly tell her she knows the answer already. But that would set her off more, so it was suggested to use humor - so now when she exceeds her number I say something silly like "Oh man, you're on to me!!! I've always loved your brother Billy more, but since we lost him in the elephant cage at Busch Gardens we've had to settle for you!" (Billy is a fictional older brother that we made up). Sounds horrible, but it would make her laugh, and diffuse the anxiety. We've gotten very creative with it, and now Billy has legendary status in our family (you often even hear my kids say to each other "well, you're no Billy, but I guess you're alright". I use the same technique with the separation anxiety - ask her what she thinks will happen when I leave the room and suggest the most ridiculously absurd scenario I can think of (being kidnapped by ninja unicorns and taken to Camelot!) Again, it makes her laugh, and diffuses the anxiety a bit - it also gives her something silly to think of instead of the scary things she really thinks will happen.

 

These are just some tricks we learned in CBT that have worked for us.

Share this post


Link to post
Share on other sites

When my kiddo was at her worst, I was unable to be anywhere without her and I regularly bumped into her because she was always within two feet of where I was standing. We used two approaches, medicinal and CBT.

 

Medicinal we used a benadryl and melissa lemon balm and had good results. When we added CBD oil, that helped the rest way to tolerable, but not yet back to normal.

 

CBT wise, patience and calm reassurance are the keys. I would make up reason to send her to another room to get something. I would stand where she could see me, and see if a repeated stern voice of you can do it, I know you can was enough. If I determined she could not do it, I would walk half way towards her, and insist in a firm, reassuring voice that she must go get what I asked her to. It usually took a while, but she managed to do it, and then I lavished praise.

 

Now that we have her viruses more under control, she runs out the front door after daddy and does not even check with me, so I may not even know she left unless I hear the door (360 fence around the property).

Edited by mayzoo

Share this post


Link to post
Share on other sites

separation anxiety is a symptom and I would say that your child did not improve as much as you think she did.

in my experience, cbt is not helpful at the stage you describe.

in your place, I would ask not what should I do about the anxiety? but what treatment is she going to respond to? after she gets better, her anxiety should become more manageable and CBT might help at that point.

My suggestion would be to change the lifestyle, diet, etc. start supplements, start two abx, and/or a steroid burst.

Share this post


Link to post
Share on other sites

Thank you for the replies. It sounds like I will need to look at additional treatments. I was really hoping the abx would knock this down. She is still on Azithromycin. (day 21) She originally started on Keflex, then Amoxicillin. She was able to go to school for part of the day this whole week, so this was a big step.

Edited by Aspen

Share this post


Link to post
Share on other sites

This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this.

 

Take small steps and try not to show how frustrated you are (hard as this is). It really does improve with time. You won't be at this crisis point for long. Improvement for us happened very gradually. One day at a birthday party I thought how great it was DD went off to dance on her own without holding my hand! Then she sat at the dinner table with her friends and didn't notice I wasn't stood behind her. Went to the toilet on her own without a second thought.....

 

DD overall is 95% better since major episode 2 years ago :) She still takes prophylaxis for now and she will have minor relapses with viruses etc. But, despite separation anxiety being the one symptom we see decline first when she gets ill, it is nowhere near as debilitating. She just gets more nervous and on high alert for a week or two. No - she's not like her friends quite yet. But she did stay at a friend's for tea for a whole 2 hours last week without me - and didn't want to go home when I turned up to collect her! She was so proud of herself and because it went well for her (i.e. nothing 'bad' happened and mum did come back), she is now primed to do it again soon. She is actually looking forward to the next time. She will just be much older when she does all the independent things like sleepovers at friends.

 

Word of warning though, I have been seeing a therapist to help me cope with PANDAS PTSD and I have discovered how much of an influence I can actually be on my daughter's anxiety. Without realising, I have been just as nervous as her (or worse?) at the thought of her being independent ('oh my god, she couldn't possibly do that.... worry, worry, worry.....people don't understand, that will set her right back'....etc. etc. etc.......) All those thoughts I have because I too am scarred from years of rollercoaster behaviour and trying to prevent disasters. We, as mums, have a duty to protect. This is our second nature and we do so many things we are not aware of. You are now programmed to condition the environment to your DD's needs. It doesn't matter she is getting so much better, fresh in your mind are those awful reminders of worse times. When will it happen again? Be mindful of the fact that we influence our children so much: I didn't know I was holding DD back until a stranger told me.

 

I hope things improve for your family real soon. Hang on in there............

Share this post


Link to post
Share on other sites

Thank you again for the replies and advice. Getting her to school each day has been reeeeeeally hard, but my motto of late has been that I refuse to have her go backwards. Sometimes I am walking out the door with my keys and she thinks she is still negotiating to stay home. If I had a nickel for how many times she has said "I NEED to talk to you" The moment of separation is agonizing at school, but she has amazing support once she is there and has stayed for a bit longer each day.

Share this post


Link to post
Share on other sites

Hi!  My son is 11 years old.  Almost 2 weeks ago, he was diagnosed with strep, and started amoxicillin. He also had a new sudden onset of severe separation anxiety and he is extremely sad, crying a lot.  He has missed a lot of school, and the school year has just begun. He is in the honors program in 6th grade, but is debilitated by the separation anxiety.  He is so afraid that I will leave and never return. He cannot concentrate in his classes, and always has a tissue over his mouth because he feels like he will vomit. He has visited the school nurse several times when he does actually go to school.  I took him to a pediatric neurologist, Dr. Shafrir, at Sinai hospital in Baltimore. He was diagnosed with PANDAS, and started a 14 day Augmentin antibiotic. The Dr. Wants an MRI and LP done, which I'm scheduling soon.  I had wanted to see if the Augmentin would make things better, but still high anxiety. I wish I knew a holistic approach to dealing with this, also, so that I can make the best choices for his recovery, because IVIG is not an option and corticosteroids have bad side effects.  He is just now seeing a psychologist (first appointment 3 days ago).  I am signing up for Dr. Song's "summit" in the hopes to find answers.  I am also saying a whole LOT of prayers.

Thanks for the listening ear!

Share this post


Link to post
Share on other sites

Andrea --

PANDAS struck us with full force when my DS was in 6th grade also, though it was toward the end of the year, bleeding into the beginning of 7th grade as well, unfortunately.  Sorry you're on this path, but I'm so pleased that you got a quick diagnosis and treatment.  Hang in there with the Augmentin; hopefully you'll see some positive impacts soon.

You might also want to look into either an IEP or home schooling with your school, or both,  to give your DS some relief in terms of stressors in the school environment while he recovers his physical and mental health.  I personally think it's really, really tough for kids at this age because the expectations for "age-appropriate" behaviors are fairly well set by junior high, and under high anxiety, it can be hard for our kids to meet that bar.

Much light and healing thoughts headed your way.  You're not alone!

Share this post


Link to post
Share on other sites

We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I had taken the energy we were putting into CBT (and then going to the psychiatrist for zoloft, also totally ineffective) and put it into medical treatment (abx, naproxen, steriods etc). Our son would never have gotten as sick as he did had we known sooner (like practically every PANDAS kid). It is very hard to know what to do, but if the antibiotics are not sufficient in bringing back your child (and unfortunately, that appears to be the case quite often) , then I would start pushing for a 5 day steriod burst. If there is a glimmer of hope with that burst, then you know it is not separation anxiety, but brain inflammation and you can pursue more medical treatment options more rapidly.

As others above have said, CBT is a very useful tool. Just not for someone in a full flare of PANDAS/PANS. I think CBT can be very helpful after a child has started recovery and parents are trying to nudge them along to be able to do more and more. When we got to that stage, I had a thought along the lines of "oh, so this is what we should have been seeing with all that CBT." And unfortunately it seems CBT is a tool many parents continue to have to use when recovering from future additional flares along the way...

Best of luck.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...