Comment from Sheree
Time: November 5, 2007, 10:27 pm

I have a 6mth old daughter who was diagnosed this week with this condition. I was very concerned about these fit – like symptons she was having which were happening on a more frequent basis. I took her to her pediatrician who is a wonderful man, who as soon as I explained her ’symptoms’ told me that he thought it was GD. He took his time to explain what it was and read out some further information and descriptions from a few medical journals for me as well, as he could see my reaction was similar to your own. I was torn between being thankful that it wasn’t some serious neurological disorder but I was also a little embarrassed, confused and also upset when he explained that there is nothing that we can do, it’s just something she will ‘grow out of’. We are having an EEG done on his advice just to confirm his findings and rule out any other conditions, but we are almost positive this is what she has. She is quite young to be doing this but he said research has found that it can start in babies as young as 3 months – particularly in girls. So far GD hasn’t seemed to stop my little girl from functioning normally and she only does it when she is not getting any other stimulation. So when she is eating or when she is getting lots of attention (games etc) by us she never does it, but after a few minutes left on the floor with toys, or when placed in her cot for a sleep she generally starts to. She tenses up her whole body locks her legs and arms across one another and flexes with slight rocking movements. She grunts and has very erratic breathing and often becomes quite sweaty and almost trance-like. I am hoping she doesn’t get any worse and she quickly grows out of it, but this may take several years. But like your child, my daughter is a beautiful, bright, happy baby who is otherwise perfect and healthy in everyway and for that we will be forever grateful.
I would like to thank you for your web site and the information you have provided, it is nice to know that we are not alone.
Sheree

Comment from Angela
Time: January 2, 2008, 5:39 pm

I am so glad I’m not the only one out there dealing with this. My daughter is now 4 1/2, and has done this since she was an infant. In almost all other respects, she is a normal child – she just has periods where it’s like she can’t help crossing her legs. We have tried everything to help her stop…punishment, ignoring, sticker charts, therapists, doctors, etc. Nothing has “fixed” it and I’m getting a bit desperate, since she starts kindergarten soon. She fully understands that this behavior is not acceptable in public, but does it anyway. I am quite frustrated that there is so little information about this out there. We are in the process of getting her an OT evaluation for sensory processing problems, but I’m guessing that since she exhibits only mild sensory trouble, that’s not what is causing this. Anyway, I’m so glad, again, that there are others out there living with this each day. It really starts to wear on you, especially when you think you’re alone, and no one knows how to help.
Angela

Comment from iluv2tlk
Time: January 28, 2008, 10:43 pm

I am copying an email I sent to the admin in the forum section as I am not sure what your email is or if this is the same person who runs the forum….

Hello, I am the mother to beautiful 17 month old twin girls. Since twin a was around 3 montts old she has beein doing this pelvic thrusting. It olny occurs when she is sitting in either her car seat, high chair, etc. It does not occur when she sits on your lap or on the floor, etc. All the doctors siad she would outgrow it, but here we are 14 months later and it is still happenig. We did go to a pediatric neuronologist who really did not have any answers. It is becoming unbearable to watch…she still to this day cannot sit in her high chair and eat because she becomes obsessed with this pelvic thrusting. Is there anway we could talk? I think it is much easier to talk on the phone than try to correspond through emails. I would appreciate any insight to this disorder…I am just looking for answers. I can certainly call you if it is a problem as far as long distance…I just neeed to know that I am not alone in this, that there is hope she wil outgrow this…thank you for your time….

Sincerely,

Comment from Dana
Time: March 17, 2008, 11:36 am

I’m not sure if this is what my daughter has or not……..she appears to strain and rub against her high chair, car seat, exersaucer, etc. Basically anything that exerts pressure between her legs. She is 9 months old and has been doing this since about 6 months. Has anyone else had a similar experience?? My husband and I are finding this very embarrassing.

Comment from Sarah
Time: March 29, 2008, 5:05 pm

My daughter is 7months old and was just diagnosed this week with GD. Needless to say I was stunned and have still not quite processed it yet. She too, is a happy, healthy baby in every other way but when she has these episodes it is very upsetting. She has the same symptoms you are all describing and definately doesn’t appear to be enjoying it but the doctor says otherwise. I was also told that in 99.9% of all cases the child grows out of the behavior by 18 months but I am getting scared with information I have been reading on the internet.

Comment from John & Jenna
Time: April 9, 2008, 8:57 pm

I am really thankful that you have taken the time to put this website together. We have a 14.5 month old daughter who after an EEG was diagnosed with “self stimulating behavior” or Gratification Disorder. This is our first child and like many of you are having good days and bad days. Not to sound repetitive, but we have really felt alone in this process and certainly feel the frustration with both the lack of literature on this subject as well as the lack of understanding. John & Jenna

Comment from Kristina
Time: June 9, 2008, 10:05 am

Wow. My daughter is almost 2 now and has been doing this type of thing for quite some time. It does not control her life however, she does it maybe 2-3 times a day, and some days not at all…it started when she was younger in the high chair or shopping cart … and seemed to happen worse when she had to make a bm. It stopped for a little while, after we had gotten her constipiation issue under control but is back now and has been a little constipated lately. I saw that your daughter also seems to have a correlation with bms and the episodes. I never mentioned this to her doc because I figured it was just some weird thing she does…but she also doesnt do it SUPER often. The issue now is that she seeks out opportunities to do it … on the arm of the couch, sitting on a ball, on her tricycle etc..I am so glad to see though that we are not the only ones out there dealing with this.

Comment from tina
Time: August 18, 2008, 9:35 am

thank you soooo much. At last someone else coping with the daily grind of GD. my 2yr old daughter was diagnosed with GD when she was about 10 months old. ever since, we as a family have tried to make life as normal as possible and just get on with things. Its a struggle, some days are worse than others but almost every day life is disrupted in some way by this disorder. we have tried everything from distraction to just completely ignoring it but nothing seems to work. the saddest thing is that my beautiful daughter should be charging through toddler hood having the time of her life instead of being a slave to this “thing” that so often prevents her from playing and having fun. not to mention the meals that cannot be eaten and the impact on family interaction that most people just take for granted.
I’m in tears as i write this, as my baby girl is beside me on the rug, doing her thing. she wont play, eat drink or do anything. It’s been a bad week!!
In the begining i took comfort in the words of the doctor who assured me that it was a normal thing and that she would grow out of it, perhaps when she started walking or when out of nappies, but to be honest there are some days when it seems worse than ever.
thank you so much for the website, parents like us, with little or no information out there really need a bit of support, especially on the bad days. !!! xx

Comment from Kelly
Time: September 9, 2008, 3:24 pm

Oh my goodness, I am so relieved that I have found other poeple who are experiencing this. My 2 1/2 year old daughter has been doing this since she was about 6 months. She only does this before falling asleep. She crosses her arms, and legs, hugs her puppy and blanket, clenches and does this terribly loud grunting, moaning noises which ends up in her saying a word like, Daddy, Mommy, puppy etc. Her hair is completely wet from sweat and if you interupt her it only angers her more, so when I do hear her, I let her be. Im finding it so hard to deal with this, not only for her, but for myself and my husband. She will wake in the middle of the night and do this as well, so I know she is not getting her proper sleep. These episodes last for about 20 mintues each time. The doctors have given her 2 EEG’s and something did show up but have not heard anymore as I am waiting for another appt to advise what is going on. I might add that I do have Epilepsy and am not sure too if this is what she has. It doesn’t seem to be. Reason Im saying this as she is fully awake and coherant and can answer if you speak to her. Does anyone know if they do have GD, does anything show on an EEG???? Confused and scared

Kelly
Canada

Comment from Angela
Time: September 20, 2008, 5:33 pm

Hi all…I’m Angela. I commented earlier about my 4 1/2 yr old daughter. Well, we’ve started kindergarten and she’s STILL doing it. I have asked her teachers to stop her every time they see her doing it, but they can’t watch her constantly. I just wish she would make the decision that GD is not worth the negatives she gets with it. Her classmates are noticing and talking about it. I get no answers…I’ve had her to the doctor, dermatologist, and therapist and nothing changes. I really wish I would have distracted her more when she was an infant doing it, but I didn’t realize what it was for a long time!

I’m very glad to see we’re not the only ones dealing with this.

Comment from Angie
Time: October 5, 2008, 9:14 pm

I just watched an episode of House and found a name for what my daughter did many years ago. We actually had a referral to a neurologist who called it a self stimulating behavior after viewing a video tape we’d brought along. She didn’t do it that often, mostly in her car seat and then she’d fall asleep (kind of convenient). Sometimes she’d do it while watching TV when she was preschool age, though it never interfered with her life and she didn’t do it in public or at school. Hang in there, they’ll outgrow it.

Comment from Elizabeth
Time: October 6, 2008, 8:41 pm

I grew up with this disorder…and just found out tonight what it was called. I was never diagnosed with it..but I had to grow up knowing there was something wrong. My parents just never took me to a doctor. I’m 23 now….if you have any questions…i would love to help with what I can….i’d rather be discreet though…it is kind of embarrassing. Please write me back though.

Comment from Beth
Time: October 26, 2008, 9:13 pm

I have this same thing, but now I am 36 years old, so I guess you can’t call it infantile masturbation anymore. I never grew out of it and I was wondering if there was anybody out there with the same thing. I have to agree that the term “disorder” is not the right term, we don’t call it a disorder in adults.

I do notice that it has always affected me during stressful moments. For example in school during a test I would feel the the urge more. Even today when I am angry or trying to work on a project for school or even when I am on the computer trying to work.

In school I had a hard time finishing tests or even finishing my homework because of it. As an adult I can control it now, but how to get rid of the urge I just do not know. Because of the show “House” I finally found what it was. I tried googling it before, but did not know what to google. That I saw the episode with the 7yr old and his diagnosis of gratification “ugh” disorder.

Comment from Gloria
Time: November 18, 2008, 10:30 pm

is there anyone out there that this is happening to their child who has other problems. autism,sensory problems ect. and are they finding this. It just became apperent. thanks , glo

Comment from jeremy
Time: November 19, 2008, 4:56 pm

Thank you so much. We actually didn’t know anything about GD until we saw an episode of House. We just thought it was something children went through (ours was just going through it early). Our daughter is 4 now…but what is so exciting is the connection between constipation and GD….Looking back our daughter has almost the same pattern. She has ‘issues’ with constipation and the incidents seem to coincide. Again it is nice to know we’re not alone – thank you.

Comment from Liz
Time: November 23, 2008, 5:15 am

I’m an 18 year old college student, and I actually heard about the disorder on the tv show “House MD”. I remembered many of my own episodes as a child, and I googled it to find out if its a legitamte disorder. Needless to say i’m glad its being adressed. the earliest episode I remember was the first time my mother talked to me about it. I was three and she found me doing it in my room. Im guessing it happened earlier than this but it’s the earliest I remember. I did it every night before bed and when I was bored. It lasted untill i was around 10 when i found out exatly what sex was, and I was ashamed to continue. When I was young my mother called it the “bad thing” and told me it was very very bad and I shouldn’t do it. But I was unable to stop and my mother made me feel awful everytime I was caught. I did it because i made me feel good, i could almost relate it to an addiction. I often rubbed myself raw and caused myself several bladder infections. I have also noticed my 4 yr old cousin rocking on her pillow while grunting and sweating. She has been diagnosed with adhd and was very primature. However, I was extremly healthy and normal. Is this something that all children do? and some just do it to an unhealthy extent?

Do not feel alone in this. There are many parents ignoring this or too embarrased to come forward. But please do not make your children feel bad about what they are doing. I spent most of my childhood feeling like I was a bad person because of the “bad thing”, and am still embarrased about it to this day. Being told I was a bad and dirty child, beacuse I did something I did not have much controll over, took a hefty toll on my self esteem.

Please respect that this is a disorder and do not shame your children.

Good luck to all of you!