Therapy helped DS with this tremendously.  I would not wait for the habits to get more entrenched.  Seek professional help sooner, and it's easier to undo.  Really.

Oh, Socks.  I truly understand what you are talking about.  My dd did the same thing for several years, washing her hands until they were raw and bled.  And I felt the same way you did.

Then my dd had an ana reaction at school, (ambulance, two epis, etc.), which caused her a complete anxiety meltdown or PTS for months.  It was absolutely horrible.  (Did you know that anxiety attacks have many of the same symptoms as ana?  SCARY!!  It got to where we couldn't go anywhere.)  I remembered we had a family friend in another town that was a child psychiatrist.  So I called, and he advised us to find a great psychologist/psychiatrist asap, (and that he felt given her life-threatening health condition, it would have been in her best interest if she had had one since the moment we found out about her allergies.)

I was apprehensive.  Didn't really feel comfortable having anyone deal with our personal problems, but I was beginning to get desperate.  I knew how to keep her safe from allergies.  I knew what to do if she had a reaction.  But I felt completely lost on helping her deal with her fear and anxiety.  All that I taught her and discussed with her just didn't seem to help like I thought it was, and I felt helpless and sad for her.

So I began looking for help.  I did a LOT of research, regarding qualifications, insurance, location.  The first one we tried didn't work out at all.  So I did some asking around, more digging and was blessed to find an angel of a psychologist.  She has worked with MANY kids with chronic health problems, including food allergies, and her own (grown) daughter has severe food allergies, too.  She is amazing!  She has helped my dd so much!  She has a kids room where my dd can play or create while they talk.  She does so many amazing things to help my dd build her confidence and helps her feel and understand that she has so much control of her allergies.  My dd loves going to see her, and she has helped us, as a family, understand so much about what is going on with her and how to help her.

I never thought in my whole life I would pay for therapy, but it has been so worth it.  It was actually one really good thing that came out of her ana reaction.  So.....if it is at all possible, I highly, highly recommend it.  It has changed our lives.  And my seriously shy, little daughter, is coming way out of her shell and is now the first one to speak up and talk about her allergies.

Hey socks, is meditation too out there for her? or you? I know the images it conjures up but all you really do is listen to a guided message to center one's self for about 20-30 minutes (I use free podcasts). I've read intense prayer has very similar calming and centering effects. Pets, too.

I sucked my thumb until 9 as well. My mother tried everything to get me to quit with nothing working. I gave it up myself shortly after 9. I really think time and consistency is going to heal a lot here. How are you holding up?

Adding a couple of suggestions, if you like it, since you're homeschooling anyhow. When I want to unwind I like to ikebana and origami to feel like I can order or align my world with a creative outlet. Origami is also really good for trigonometry and architecture. For ikebana (flower arrangements) I would recommend Keiko Kubo's books. She's more contemporary than super traditional but I prefer that personally. There's also a lot of in roads to community groups for both arts.

I had a talk with her last night and asked her if something scared her recently. She got upset and mentioned an incident that happened about a month ago that involved her getting hives all over her forearms at a church function. It was a drop off type thing, but I always stay. It happened within the first 5 minutes. I suspect a friend caused it by grabbing her arms with unwashed hands in greeting her. It was one week into homeschooling and we were both feeling less stressed, and more in control until that happened. She got another single hive within that week at home that we never could figure out. We weren't positive it was a hive, it could possibly have been a flea bite. Also, she would kill me if she knew I shared this, but she still sucks her thumb at almost 9 yrs old which is also getting worse since being home.

She has not had strep or been ill lately. I read about that last night, and found that fascinating.

Throwing out another thought - has she had strep recently?  A small # of people can develop a form of OCD that is related to strep - I can't remember the name of the syndrome.

But yes, I would involve a mental health professional as it is affecting her (and your!) quality of life.  And you certainly don't want it to take over any further. 



ETA: I remembered - it's called PANDAS.

Quote from: twinturbo on October 17, 2011, 09:19:36 AM
I'd give it some time before starting up therapy, not because I don't think therapy works just that there's already been enough change as it is plus if she's concerned about her environment sending her into a new one where there may have been milk probably isn't going to help. My oldest seems a little OCD because he does not like anything sticky on his hands, no residue. Sound familiar? SpEd almost tried to make that an issue but after I pointed out it's learned survival trait (which is what I consider it) they decided to let it be.

Note it, watch it, if it reaches a turning point where putting her in a new environment with a therapist outweighs the risk you may have to do it but I tend to be more conservative about these things.

Bold added.

It's probably a PTSD type of reaction as someone else mentioned. Has she recently had a reaction of any sort? Or has she had a close call?Or maybe it's just the whole adjusting to home school thing?  How long has she been doing this?

Sorry for all of the questions, but just as a starting point, after a reaction or close call, I wash my hands constantly for about a month. Do I know that is silly given our home is allergen free? Yep. Do I still wash my hands all the time? Yep. I also know it will stop as soon as I feel ok again. It's one of the few ways I can "control" my allergy, if that makes any sense at all.

I would give her a bit of time to process it all, depending on how long it's been going on. If it's been a couple months without stopping, give a Dr. a call.

ETA: My DH also washes his hands way too much after a reaction.

I'd give it some time before starting up therapy, not because I don't think therapy works just that there's already been enough change as it is plus if she's concerned about her environment sending her into a new one where there may have been milk probably isn't going to help. My oldest seems a little OCD because he does not like anything sticky on his hands, no residue. Sound familiar? SpEd almost tried to make that an issue but after I pointed out it's learned survival trait (which is what I consider it) they decided to let it be.

Note it, watch it, if it reaches a turning point where putting her in a new environment with a therapist outweighs the risk you may have to do it but I tend to be more conservative about these things.

Hi Socks. I am so sorry your daughter is going through this. My daughter, who is now 7, began the compulsive hand-washing not long after her anaphylaxis a year ago. She would wash her hands literally every five minutes, basically anytime she touched anything other than her own body. She was convinced there was egg on every surface, particularly if we were outside our home (but even in our egg-free house, too.) She also had other compulsive behaviors--would ask me, "Are you sure that's egg-free" literally fifty times in five minutes as I prepared her meals. She also wanted to watch me prepare all of her food.  It was what pushed me to get her into therapy. She started art therapy with a therapist who had worked with kids with food allergies before, and she thought my daughter was exhibiting some signs of PTSD. She said children express PTSD differently than adults, but that compulsive behaviors were a common symptom. And since we could trace it back to that episode, the compulsive behaviors "made sense". She didn't feel safe in her environment anymore, she didn't trust anyone else anymore, and she was terrified that she was going to die because of another egg exposure.
Anyway.. art therapy has helped quite a bit. My DD is very, very shy, and loves to  paint and draw, so art therapy was a good fit for her. I don't think she would have gotten as much out of traditional talk therapy at this point, because of her temperament. But I would suggest you pursue some outside help. I called her allergist, BTW, and the nurse had a list of names at the ready. She said it's VERY common for kids with LTFA to need some counseling to deal with the stress involved. There's no shame in it, and I think it would be helpful to your daughter. You are a loving, attentive mother to be concerned. Big hugs! It's so hard to see them suffering in this way but things can and WILL get better for her, and for you.   

I have no advice but want to offer my support to you and your family.

Hi Socks, just wanted to say that there were a few threads on the old board about flare up of anxiety related to food allergies right around age 9.  I don`t recall if your dd is 8 1/2 or 9.  There was a thread a month or two ago about this on the old board.  It may have been in OT.  My dd also got a little bit anxious and started worrying about someone`s spit (after eating Cheetos) landing on her during normal conversation, and other simliar things.  This was happening all the time, and also she had increased hand washing a lot.  Other people on the board experienced the same thing.  9 seems to be an age where they suddenly realize their own mortality or where they own the allergy more.  It seems like a lot of the food allergy kids start to have more anxiety about the food allergies around age 9.  With dd it went on for a 2 or 3 months and then suddenly went away.  It started for no reason that I could figure out.  So, even though your dd has had some stresses with the whole school thing, it may also be partly the age.  However, I think part of it too is that pulling her out led her to deduce that she was not safe at school.  That is not your fault; that is the school`s fault.  You did everything you could, really.

I do think you should address with her why she feels unsafe at home.  That is a controlled environment, and if you are sure that dh and ds and you are handwashing as soon as everyone gets home from outside, she should not feel afraid at home. 

First of all, you are not a failure.  You didn't cause this.

My ds has similar issues.  There was a time when his hands were raw from washing them so much.  Then he would be constantly licking his lips.  He always washes his hands before he eats anything.  He worries about what is on our hands, phones, etc.

I did talk to pediatrician and she said that he has post traumatic stress from his anaph. reaction.  She talked to him a little bit, and said if it continues we can see someone about it.   I think all of us have some degree of OCD , but for kids with ltfa it can really increase.

You may both feel better if you talk to ped about it. Have you talked to dd about it at all?

Yes, once it gets to this level, it's time to involve a mental health professional.



Your DD's behaviors sound exactly like the behaviors that one of my DD's friends had when she developed post-traumatic OCD at about the same age. (Unrelated to FA, by the way.)

  Poor kid.   

CBT really helped her with developing some healthy coping skills, though she was also on anti-anxiety meds for a time to get things under control.

Socks, I'm so sorry that things have gone this direction.   

I thought since starting homeschooling several weeks ago dd's anxiety level would go down, however, the longer she is at home, the more I am noticing new disturbing behaviors.  At first she was going through wipes outside of our home at a high rate, and then she began to compulsively wash her hands until they were raw and chapped at home. She stopped that (because it hurt), but now she CONSTANTLY asks me if her hands are clean both inside and outside of our home. Our home is 100% milk free. She doesn't want to touch anything her brother or dad have touched (example tv remote) even though they both wash their hands as soon as they come in the house, as do all visitors.  I am so sad, and feel really unable to cope with this on top of everything else we've gone through with her school AND the new responsibility of homeschooling (which I had not planned to do).

Does anyone have any advice? Is it time to involve her pediatrician?

Thanks, I am feeling like a total failure.