Desperate for Help: Our 7-Year-Old Daughter is in Crisis and We're Struggling to Cope

[virtualphoenix]

Hey Reddit, We're in a dire situation with our 7-year-old daughter and we desperately need advice and support. Over the past week, our family has been barely hanging on through her meltdowns, getting only 1 to 5 hours of sleep a night, and making 2 ER visits. She has always had high anxiety and, over the past couple of years, has developed a severe sensitivity to clothing. These issues seem to amplify each other now, and she's spiraled to the point where she barely eats, drinks, goes to the bathroom, or sleeps, leading to frequent meltdowns multiple times a day.

Background:

After a growth spurt, she is very tall for her age, ~97 percentile, she grew out of her already limited set of clothes she was comfortable in, including her last pair of underwear. This triggered a lot of anxiety because without underwear, all bottoms felt too awkward for her to wear. Not being able to wear clothes then increased her anxiety since she couldn’t go out or have people over. We also pressured her to wear clothes, which only caused more anxiety. The increased anxiety then led to heightened levels of sensitivity which increases anxiety and so on in a negative feedback loop. She's now at the point where she can’t wear clothes, wash her hands, brush her teeth, take medications, go to the bathroom, and rarely even eats or drinks. She won’t comply with anyone’s requests, even doctors. She often stands in the bathroom for hours as the tile feels the least triggering to her sensitivities. Touching water is off-limits because it feels “too soft” and makes her itchy when it dries, triggering anxiety attacks if she accidentally gets wet. This all happened within a month where we haven't had anything close to this serious ever happen before.

What We’ve Tried:

We’ve taken her to the ER twice, where they did blood, urine, neuro, and psych checks. She does better in the ER, not melting down as much in front of others compared to us, especially me (Dad) and her Mom. We have Grandma and Auntie here, which helps, but we're all running on extremely low sleep, and the situation is not sustainable. We've consulted with three psychiatrists and three therapists who don't know what's going on. She’s on Guanfacine (0.5mg, 70lbs) twice a day for calm and sleep, and we're trying to start Lexapro for her anxiety.

Our Plea:

We’re desperate for any advice, experiences, or support you can offer. We feel like we’re at the end of our rope and don’t know what to do next. Any suggestions or words of encouragement would mean the world to us right now. Thank you.

 

[outlaws4christ]

@virtualphoenix She needs to be evaluated by a pediatrician then referred to a specialist. She is likely to need occupational, aba, and social work therapy. Like yesterday.

Occupational therapy would help her learn how to tolerate and eventually become desensitized to the overwhelming sensations she’s experiencing. I’ve worked with many talented OTs who helped children with sensory issues overcome them.

Social work would help her learn how to navigate the big feelings she’s having, communication with herself and others, and general understanding of how to be without it being too much!

ABA (modern and ETHICAL) would help her current anxious/avoidant behaviors transition to a more positive and efficient connection/reaction. The BCBA would help identify the antecedent and plan to improve and evolve.

I can’t imagine that a well rounded clinician would tell their patients parent that they just don’t know. They must be incompetent or very young in their field.

You as parents need to begin attending classes (often offered by the clinicians treating your child) in continuous behavioral intervention. The fact that she is fine with some people but then becomes hyperactive with you points to signs that she’s learned to receive a conclusion to what she is trying to avoid/get from you.

It’s important for you as a family to understand how to support her without reinforcing the avoidant behaviors.
DO NOT begin behavior interventions on your own. It needs to be guided with a professional as you want to make sure that you do it ethically.

PLEASE be aware of relying on medication. Psychiatrists often look to medication for EVERYTHING. Do not exclude it, but be mindful that Child development is fragile and exposing them to rather intrusive treatments at such an early age can sometimes do more harm then good. Children battling very difficult feelings and experiences often benefit more from ETHICAL AND MODERN social, emotional, and behavioral therapy.

Good luck.

 

[virtualphoenix]

@outlaws4christ Thanks so much for your advice. We are doing OT and I'll look into social work and ABA. When I say they don't know, I mean that they personally haven't seen and don't know how to deal with the combination of sensitivity and anxiety that's so acute in her. One occupational therapist actually had heard of a similar case 20 years ago that was helped by their office's therapy and by bringing a dog into the home.

 

[zachadams0112]

@outlaws4christ I have such a hard time recommending ABA as a clinical therapist. It’s always left such a bad taste in my mouth. My nephew, who I am a caregiver to, was receiving ABA and it was like training a dog for the convenience of the parent. It made me so sad. BUT i do agree a psychological evaluation and OT and clinical therapy are likely the needs here.

Also don’t take Oppositional Defiance Disorder or Disruptive Mood Dysregulation Disorder as dnx. They’re trash diagnosis.

 

[blackpool1985]

@zachadams0112 May I ask why you consider those diagnoses “trash “? I’m just curious as a future clinician who is highly interested in child externalizing disorders

 

[zachadams0112]

@blackpool1985 That’s a whole soapbox. Essentially, a youth or adolescent experiencing symptoms of ODD or DMDD can be explained by other “co-occurring” disorders. I find a lot of times when a kiddo has been dnx either, they contain a couple other disorders with the same symptoms. I think they are trash diagnosis because they are regularly over diagnosed when parent management training and psycho education can be used to address the concern because it’s usually the parents not understanding the kid.

 

[blackpool1985]

@zachadams0112 Thanks for the reply, I really appreciate your insight and perspective! While I do agree that it is over diagnosed, I feel like I’ve seen a few kids through my previous work that definitely had the ODD presentation without the presence of other disorders. I definitely agree though that most oppositional kiddos present with many different symptoms that could encompass many different diagnoses! Do you have an opinion or preference on treatment options for child that present with externalizing symptoms?

 

[zachadams0112]

@blackpool1985 Finding the root of the externalizing, like any other therapy. Typically, depending on the age, I immediately start with parent work because it’s all about consistency. Check out Collaborative Problem Solving. This specific book has been indispensable working with youth that exhibit those symptoms. This might be great for OP, too.

https://www.thriftbooks.com/w/treat...greene_j-stuart-ablon/246860/#isbn=1593852037

 

[outlaws4christ]

@zachadams0112 I can understand your point. There’s a reason as to why I specify ethical and modern practices. ABA in its most recent,compassionate, and client oriented approach has the child truly benefit from it rather than before where old ABA was done to have an individual conform for the benefit of others.

I use ABA actively in my profession, myself, and with loved ones who struggle with obstacles that interfere their day to day lives. I believe In depth research of clinics, BCBAS, and RBTS should be done before ever signing a child into a program.

 

[virtualphoenix]

UPDATE: She's turned a corner and been a lot better the past two days. Still not wearing clothes or washing, but no manic episodes where she's screaming for hours and now she's sleeping, eating, and just feeling a lot better . We've already had to maintain the balance of structure and calming by increasing structure and I think without your comment's @outlaws4christ we wouldn't have been ready for it. She took one dose of Lexapro, but I'm wondering whether we should discontinue. This as something early yesterday seems to have been super helpful to her. One thing I told was about the girl like her 20 years ago who got better and became very successful. She also said that we've been better about being nicer to her Also, the understanding of the anxiety sensitivity spiral has been a key foundational understanding for everyone in helping stabilizing things. For example, anxiety from discipline for non-sensitivity issues is relatively okay compared to sensory issues. And for sensory, she is understanding that it comes slowly and she's already noticing and celebrating being less sensitive to many things and that she's having better days

Thanks everyone, all your input has been amazingly helpful.

 

[dizzy11981]

@virtualphoenix I don't know enough about this disease OR your daughters symptoms but my niece went through something similar and it turns out she had autoimmune encephalitis. It's super rare and often misdiagnosed because not enough doctors are trained on it. She was so lucky that the hospital near her house had just received training. Anyway, it was an absolutely wild journey and if the chance your daughter has it too is .00000004% it's worth mentioning here!

 

[definedbytruth]

@virtualphoenix I don't have any input here but I just want to say that I'm sorry, I can't imagine how difficult it must be to see your child suffer and not know how to help while also not getting any sleep yourself..

I really hope you find something that works for your family soon.

I will say that it kind of sounds like they're on the spectrum with intense sensory issues but I know for myself that when I am stressed out my sensory issues are harder to deal with. Maybe the Lexapro will help with that a bit.

Good luck!

 

[randar]

@virtualphoenix Please look into Pathological Demand Avoidance (PDA), which is a subset of autism. This sounds very much like autism, especially the sensory sensitivities. If it is autism, I do NOT recommend ABA, as another commenter has mentioned below. I know that some people disagree with this, but ABA seeks to change surface-level behavior, which is sometimes helpful, but you need to get to the root of why she is feeling so anxious and having such a hard time. Behavior is communication.

There is a book called Beyond Behaviors by Mona Delahooke. I recommend checking it out.

Finally, be gentle with her, and yourself. Drop all but the most essential demands for now, this is an emergency situation. If she needs to stay home, naked, on a screen all day, and that's something your family can accommodate, try to let go of the shoulds, for now. Focus on showing her love and affection and ACCEPTANCE in whatever way she craves. Your number one goal is to get her back to a sense of nervous system safety first, then you can slowly reintroduce more demands and deal with more future-oriented concerns.