Good afternoon!! This post is basically for parents of school-age children. Or anyone who wants to read it, really. I want to talk about how pulling/picking often reduces during the Summer non-school months, and then can reappear with a vengeance once the school curriculum has started again in the Fall.
Over many years I have seen this cycle: child/adolescent pulling reducing during the Summer, everybody getting happy that the pulling is gone or minimized (hopefully for good!!!), and then when school starts, a sudden upsurge in behavior and the resultant feeling of being totally let down and a failure.
So I thought I would write a bit about this, as it is so much better to be educated, prepared and well-positioned, than to simply wait til the last minute. No-one is a failure. Ever. We are simply families dealing with picking and pulling, and learning how to handle it.
For many children and adolescents school is a big trich trigger, for a slew of different reasons. It can be because of studying, reading, computer usage, being in a class and feeling frustrated or bored, it can be due to performance anxiety, fear of peer pressure, loneliness, anger, absentmindedness, etc.
All KINDS of things about school (before, during, and after) can set the environment for hair pulling and skin picking in the young person who is prone to the behaviors.
Summer, on the other hand is often a period of relief, or less pressure of the sorts that can trigger unwanted behavior. I think it is very important to discuss this with your child, so they also begin to understand the effects of the various phases of life on their own nervous systems and conditions.
After 20 years of watching kids grow up and learn to manage trich, I find the ones who develop an understanding of their own cycles and triggers and learn over time to take responsibility for them, do the best and are more well-adjusted in general.
I have a friend with a son who was born with PKU (phenylketonuria), a genetic metabolic disorder that prevents him from being able to digest proteins with phenylalanine in them (that’s like just about everything).
He’s now 24, and all his life knew about his condition and how to care for it by dietary management. I remember him as a little kid, first going to pre-school, and he already knew what he could and couldn’t eat, and why.
He certainly did try things now and then that were not good for him, but overall has been exemplary at understanding and managing his PKU. Now at 24, he is happy, healthy, and employed, with future possibilities abounding.
All due to his commitment to his own health and balance. He UNDERSTOOD his sensitivities, he learned the strategies, and now he lives by them 99% of the time.
He’s a good model for dealing with a trich kid. Thank goodness the consequences of trich are nowhere near as severe as when a child with PKU eats an inappropriate diet (brain and nerve damage), but the fundamental issue the same: i.e. children need to understand their disabilities and conditions, and learn how to navigate through life with them in a way that supports full potentiation and well-being.
So it might be a conversation about checking in, seeing how behaviors have changed, and reminding your child that it is important to take stock of whether any changes have occured since scho0l let out for the Summer.
And prepping for school ahead of time, through discussion, identifying useful strategies for “what if” situations, etc. The more upfront this information is, the less likely a child or teen is taken by surprise. In other words, be prepared for impulses to return, and have a plan of action ready. This way, if there turns out to be no impulses, you can celebrate - and if there ARE impulses that arise, you can celebrate that you are ready for them!
If you find that once school starts, and the pulling/picking is becoming a real problem, you may want to set up a “504″ plan to help your child in the classroom. This enables you to have the school allow “fiddly toys,” scarves, hats, and other useful tools to help your child in the classroom environment. Some kids really find this helpful.
Here’s a description I borrowed from somewhere on the web describing what a “504″ plan is, and also what an “IEP” is. They are both to assist students in getting educated when also dealing with problems and disorders.
” The “504″ in “504 plan” refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. “Disability” in this context refers to a “physical or mental impairment which substantially limits one or more major life activities.” This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.
A 504 plan, which falls under the Americans with Disabilities Act, is an exercise in civil rights, an attempt to remove barriers and allow students with disabilities to participate freely. An IEP, which falls under the Individuals with Disabilities Education Act, is much more concerned with actually providing educational services. Students eligible for an IEP, or Individualized Education Plan, represent a small subset of all students with disabilities. They generally require more than a level playing field — they require significant remediation and assistance, and are more likely to work on their own level at their own pace even in an inclusive classroom. Only certain classifications of disability are eligible for an IEP, and students who do not meet those classifications but still require some assistance to be able to participate fully in school would be candidates for a 504 plan.”
So think on this as an option next year if your child is suffering when he or she returns to school. Knowing what your options are ahead of time can make a world of difference, and having your young one fully understand the cycles of trich triggers and impulses in their lives can help them navigate through life more happily.
I only wish that my own Mom knew this kind of stuff when I was in grade school – so much heartache could have been avoided! For both of us!
In closing, what I see is that for many trich waxes and wanes, but having a practical, loving and low key approach, and being flexible and open to being willing to do whatever is necessary, sure makes for a happier life!
The really cool thing is – with all the support for new research and an increase in interest in these types of problems, I suspect that we will have some powerful tools in the near future. Til then, we need to stay in balance, be gentle, remember the big picture and the very tiny piece that trich really is within it. (An important piece, but still a tiny one!)
And here’s a new “in closing” — I just now got interrupted by a call from CNN about the new study by Dr. Jon Grant on N-Acetylcysteine and trich, and they asked me lots of questions! Problem is, you never know what they will take from your descriptions, but let’s hope the piece will be ok.
Much love, Christina
10 Comments
Hello,
I was chewing the insides of my mouth and tongue when I first grew teeth. I remember sitting in my kindergarten class and doing so, and freaking out the girl next to me who had seen blood in my mouth. By middle school I would sit in my math class (the MOST difficult class for me) and rip my hair out of the top of my scalp. I would also sit at home and do it for hours. I remember asking myself why I did it and not knowing the answer. I even told myself I would stop, but next thing I knew I was doing it again. I was most definitely the ‘weird’ girl growing up. When I hit puberty I would pick any acne on my face, and I had severe acne (pimples on top of pimples, often in a chain that looked like the Hawaiian islands). This has haunted me for life. When it was brought as a concern to my mom, she took me to the doctor and they put me on Ritalin and called it ADD.
I had no idea it had a name until March of this year. At first it helped just knowing that it’s a legitimate problem, but now it seems to have just taken over. I have a spot on the back of my scalp that I pick constantly. First thing I do in the morning, as soon as I hit the alarm clock my hands come back to my head. It’s awful. It started out as a tiny bump, but now the pieces of skin I pull off are easily the size of a dime. That’s pretty huge if you ask me.
Anyway, I definitely notice that it comes and goes with the level of stress endured from school and social situations. I’m currently looking to rent my own place for the very first time. Normally stressful, yes, but I get to do this from states away as I will be moving away for school. I am also trying to figure out how to pay for this place and school at the same time (school is $15,000 a semester, housing is generally $1,000 a month for a studio). Not a single relative or friend is lending a helping hand, my parents didn’t bother to put anything into savings for me and charged me rent in their house (about half of every paycheck in the last year), and because I live under their roof, I don’t qualify for a cent of financial aid. My life is just overwhelmingly stressful right now… and it’s not going to get any better. For the last few months I haven’t had any breaks like I feel I normally would.
You mention things you can do for children, but what would you recommend for someone in my position? Just stopping myself and telling myself that I’m done with it isn’t working anymore. I’m trying to eat better and get more sleep and everything in hopes my mood will just brighten, but it seems no matter how I am feeling at the time, I constantly have the urge to pick and bite.
Dear Christina,
Thank you so much for your blogs. I just read all of them. I would love to hear more about how you learned to deal with each of those different things that used to make you pull but don’t anymore (which you listed in a past blog).
I find with me that if I’m stressed with studying that I either pull or munch. I don’t have an eating disorder like anorexia or bullimia, but I can munch away at food (usually healthy) continuosly if not pulling but quite stressed w/ studying (until I’m quite full). And yes, as you mentioned for yourself, having too much sugar or feeling tired are both triggers for me.
I’d also love to hear what role spirituality or praying plays in your recovery.
Am I inspiring another blog with these questions? I’m sure I’m not the only one who wonders about the above questions and would value hearing your insight about them.
Thanks for being such a natural and real person as a role model.
Love,
-I
Hi Christina!
I really like your blog! It’s both comforting and imformative.
Good luck with the retreat this year. I won’t be attending this year, but I hope it’s great- and keep writing if you have the time!
hugs- Erika Schnyder
I have been reading your blogs (as I sit here at my desk at work on the verge of tears). I’ve recently discovered that my 10-year-old daughter has been hair-pulling: she has her first balding spot which appeared earlier this week. Prior to this I was completely unaware that she had been doing this, or that there was an actual medical condition that resulted in this.
After having spent the last four years dealing with her ADHD, I became overwhelmed at the possibility of another difficult to treat affliction that caused her emotional pain. And then she just texted me to tell me that someone, again, just made fun of her on the school yard.
I just needed to vent – I don’t even need a response, I’m sure you get overwhelmed with requests. I just wanted to drop a note and say hello, and thank you for all of your postings – the information has been very helpful.
Rachel’s mom … Shelle
Dearest Shelle, thanks so much for posting. Your beloved daughter will be fine. Yes, another BUMP in the road, but all in all, things could be a lot worse. If you would like to speak with me, I can always be reached at the TLC offices at 831-457-1004. I’d love to chat. Love Christina
Dear Shelle,
I know exactly how you felt when you wrote your message back in September. I only saw it today but felt that I had to write to you to tell you that you are not alone and to also tell you the experience of my daughter. She was 5 when one day I was speaking to her and noticed that she had no more eyelashes! Not a one – they were all gone. I was in shock. I asked her what happened and she told me that she just pulled them all out. She told me that when I had told her to put a fallen lash between her fingers and make a wish, that gave her the idea of pulling more out. How I hated myself and that stupid adage! I quickly told myself that it was just a one-off and that they would all grow back and that would be the end of that! However, this was not to be. She continued, some periods worse than others. There would be empty spots where lashes should have been, some stubs growing back, then holes in the eyebrows, then scabs from her finger nails when there were no more lashes to pull, etc. Her eyes looked like little battle fields. The worst was that she had long, black lashes and gorgeous green eyes – everyone used to comment on how beautiful were her eyes!
I then started researching this phenomena and discovered it had a name, and this web-site has been an invaluable source of information for me. I found the name of two therapists in the Washington DC area where my family lives (we live in Switzerland where there are virtually no resources available) and I set up a series of 2-3 times a week sessions during one month in DC. We learned behavour modification techniques and strategies, how to be in touch with feelings, relaxation techniques, etc. I was not sure whether my daughter was taking anything in but I tried to continue these techniqes at home. I stocked up on boxes and boxes of “fiddly toys”, silly putty, squiggly things to keep her hands occupied, I was vigilant in replacing her pulling behaviour with another activity for her hands. When she discovered the Nintendo game-boys and DS this was fantastic. I let her play as much as she wanted because I found that it really helped her to control her pulling. My daughter also has ADHD and has been on Concerta since age 7. I don’t find that it helps the hairpulling behaviour and, in fact, might actually increase the anxiety that triggers hair pulling. I wish there were studies done on ADHD and trich and the effects of Ritalin (methylfenidate) and trich.
At about 8, her pulling calmed down. The eyelashes grew back and I was so relieved – I grew more relaxed however there was always a little voice in my head telling me that it might come back and to watch for it. Well at the end of that summer and just before school was going to start (my daughter almost stayed back the previous year but her teachers said she could try fourth grade and if she did well, they would let her stay in fourth grade. So there was a lot of pressure on her.) Looking back I realize that my own anxiety also worked to increase my daughter’s anxiety about school. Well at about the end of August, early September, I noticed a small bald spot on my daughter’s head. This was the first time her pulling had moved to her head. I felt so defeated, sad and overwhelmed. It took me several days to deal with my feelings. In the end, I realized that I have to separate myself from my daughter. This is her battle – I am there to help her in a positive way but, in the end, I have virtually no control over her behaviour. This actually helped me to be more constructive and made the situation more manageable for me. So, I got my fighting spirit back and went into full swing behaviour modification mode again. I took out all the fiddly toys and bought new Nintendo games, etc. I did NOT do as the doctors here told me to do back when my duaghter was 5 or 6 – ignore it. This was the worst way of dealing with it I found. Goes to show how much they know about these things here in Switzerland! Well, my daughter is 10 now and has a full set of eyelashes, eyebrows and no bald spots! For the moment, she is trich free. However, we have recently started the Concerta again after a 6 month break from it and I am waiting to see if the trich comes back. I am not sure if there is any link there, but I am going to watch to see. I do believe that trich is a life-time disorder and that to be fully cured is extremely rare. My sister has pulled out her eyelashes and has picked the skin on her head all her life. She told me she would stop for several years and then it would come back. So, I am just enjoying this trich-free time and hoping that it will last as long as possible. Occaisionally, I notice one eye-lash gone on my daughter (I have learned how to spot even one eye-lash pulled out!) and ask my daughter what happened, how she was feeling, when she pulled it, etc. She usually doesn’t want to talk about it and so I drop it. I am trying to work with her on her self-esteem, social skills and overall outlook to help her to feel more positive. I know that she is proud that she has stopped although she never talks about it and I don’t talk about it anymore now. But you can be sure that if I notice more than one or two pulled, I will go into full swing again with behaviour modification approach and the constant vigilance. I wish you all the luck with your daughter and don’t hesitate to correspond further if it helps.
Dear janet
i know how it feels and how difficult to separate our feelings from theirs and not feeling personally defeated
My son has had Trich and anxiety since second grade, he is now in 5th and after a full year of Trich free, it’s back, yes noticed 2 lashes gone
Dr is now recommneding Concerta for his adHd – very agressive, emotional and i wanted to know if that helped your child and didn’t make trich worse
thank you
Hi, I want to agree that pulling can be worse when school is in. My daughter pulls very little during the summer, but when school starts so does she. I have to say though that this past year we took her off her adhd meds and the pulling during the school years was alot less! Hardly noticeable at all. She says she pulls when she is bored now, but does keep count so she doesnt pull too much. We are proud of her for having such a good attitude with her problem!
You must be ready also when they reach a teen years. We teenagers are the most commonly affected population of this skin disorder. It is caused by the blockage of pores and overproduction of sebum. It manifests with bumpy skin lesions also known as zits. It becomes reddish, enlarged, and may contain pus when inflamed. Mangosteen has been found to have anti-bacterial properties against acne-causing P. acnes and S. epidermides. Its anti-inflammatory action soothes the irritation and prevents further growth of the pimple.
Christina,
this is a very good post. I had never heard of this condition before.
It is good that you give an objective eye to a parent about the cycle.
When you are emotionally involved (like a parent)it hard to see patterns and cycles like this.