Help! At my wit's end!

iVillage Member
Registered: 06-02-2004
Help! At my wit's end!
3
Wed, 04-14-2010 - 9:58pm

So, I haven't posted here in quite some time because a lot has been going on in my life in the last 6 months. I had my third baby (my first boy) and thankfully he doesn't have any signs of the genetic syndrome that my second dd, Lily, has nor does he have any signs of autism. Amazingly, she has done exceptionally well adapting to his arrival. In fact, she would give me hugs before he was born (she told me they were for him, not me, LOL) and continues to hug him now. I no longer get hugs, but that's another story. ;) Anyway, in spite of this positive reaction, she has cycled back into picking her fingers and toes to the point of making them look like raw meat. This happens a few times a year, but this time is much, much worse. She has developed an infection on one finger and one toe and is now on her second round of antibiotics. To complicate matters, her genetic disorder affects her skin leaving it dry AND she has a neuropathy which means she doesn't feel the pain of the picking until she has really done a number on her fingers/toes. We have to keep vaseline on her hands and feet all the time to help with the dryness and she has to wear gloves all the time to help stop the picking. Now she is sneaking the gloves off to pick. The school has been very supportive and is using visual cue cards to remind her to leave the gloves on. We have the same cards posted at home in various places where she is most prone to picking. I feel like I have two babies at home because I can't leave her alone without fearing that she will take off the gloves and pick again. We (teachers, ped., and my dh and I) all agree that anxiety is causing this, but we don't know what has changed in the last two weeks to make her relapse. She has always had issues with handwriting and so I wonder if that may be the problem. I asked her when she picked her fingers at school and she said when she was writing. The teachers are doing the best they can to monitor her, but sometimes she manages to get her gloves off anyway. I can't even manage to keep her gloves on all the time, so I can only imagine how hard it is for them with so many other kids around. She is mostly in gen. ed, but has 90 minutes in the autism room daily. These times are broken up into 4 different visits so that she can get sensory breaks at various times as well as work on handwriting in the autism room where she can focus more. They did tell me that Lily has been requesting to write in the gen ed room lately, so they decided to let her do it there some and then spend time in the autism room reinforcing the writing she did in the gen ed. room. The teachers assumed that since Lily was the one who wanted to write in the gen. ed room that it would be okay. Now I'm wondering if it's just too much for her. But then why would she want to do it if it's making her anxious? She's only seven and of course doesn't like to share her thoughts much, so it's hard to figure out. I'm meeting with her teachers on Friday to figure out what has triggered this sudden relapse. Do you think that it would be crazy if I asked for her to not have any handwriting until her finger heals? She is on reduced paper-work, but I think letting her use the tiles and computer exclusively might help. At least then we could see if that is what is causing the anxiety. There's only 6 weeks of school left, so what could it hurt? Sorry this is so long, but I just hate seeing her hurt herself and not know why. I'm so tired of seeing bloody, torn fingers and toes. It makes me want to cry. She is on Prozac, which her ped. increased a few days ago. He has referred her to a child psychiatrist. But, I just found out that the dr he referred her to is no longer accepting patients. Ughh... So, while we try to find a dr., I have a precious dd who is suffering. Not to mention, she doesn't regulate body temp well and it's starting to get hot here in TX. She has to wear a cooling vest in the summer heat and gloves are not going to be safe for her much longer. If anyone got this far reading, thank you. I don't mean to ramble, I am just so frustrated.

Amy~mom to Natalie, 13 yrs; Lily, 7 yrs (pdd-nos, Sensenbrenner Syndrome) and Joshua, 6 months

iVillage Member
Registered: 11-28-2006
Wed, 04-14-2010 - 10:49pm

wow hon, that must be hard. My son chews his fingers and toes but not as extrememe as lily.

I think the typing is something that really should be considered. And what an easy fix if this is whats causing the problem. I know kids who have Dyslexia and Dysgraphia who get computer help, why shouldn't your dd get the same accomodation?

You know just be careful about the prozac. And I know I'm not a doc but when my son was on another SSRI for anxiety (Zoloft) his tics and anxiety went thru the roof. My poor kids lick lipping tic became sooo bad that he wasn't just licking, he was also rubbing and his whole face ended up red.

I sure hope you can get somethings in place to fix this.

Glad to see you btw :)

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
In reply to: natalily
Thu, 04-15-2010 - 2:19am
iVillage Member
Registered: 06-02-2004
Fri, 04-16-2010 - 3:13pm

Thanks to both of you for sharing your thoughts with me! It's nice to know I'm not the only one dealing with this particular issue. Well, not nice that some one else has a child with this, but you know what I mean. ;) Anyway, I finally got an appt with a child psychologist and amazingly it's in the first week of May! Also, I spoke with her teachers today and we all decided that it would be best to let her use a computer for a while and just give her a break from handwriting. That way her fingers can heal and we can see if it lessens her anxiety. I'll let y'all know how it goes.

Amy~mom to Natalie (13 yrs); Lily (7 yrs, pdd-nos, sensenbrenner syndrome) and Joshua (6 months)