Need Input

[L Haven]

Are any other families dealing with PANDAS seeing any self-injury? When my son is in meltdown mode, when it's all at it's worst, and he is sobbing on the floor - he will sometimes bite his own arm, or slap his own face. It's really distressing. Sometimes he fights the urges, even grabbing one hand with another to stop the slap, but it's a huge struggle. Anyone else??

[peglem]

Are any other families dealing with PANDAS seeing any self-injury? When my son is in meltdown mode, when it's all at it's worst, and he is sobbing on the floor - he will sometimes bite his own arm, or slap his own face. It's really distressing. Sometimes he fights the urges, even grabbing one hand with another to stop the slap, but it's a huge struggle. Anyone else??

 

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us....

[Suzan]

My 8 yr old will hit herself in the head, face or on her legs when she is out of it. She also abuses herself verbally saying she is a horrible, bad person. It is heart breaking.

 

Susan

[L Haven]

Are any other families dealing with PANDAS seeing any self-injury? When my son is in meltdown mode, when it's all at it's worst, and he is sobbing on the floor - he will sometimes bite his own arm, or slap his own face. It's really distressing. Sometimes he fights the urges, even grabbing one hand with another to stop the slap, but it's a huge struggle. Anyone else??

 

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us....

[L Haven]

Are any other families dealing with PANDAS seeing any self-injury? When my son is in meltdown mode, when it's all at it's worst, and he is sobbing on the floor - he will sometimes bite his own arm, or slap his own face. It's really distressing. Sometimes he fights the urges, even grabbing one hand with another to stop the slap, but it's a huge struggle. Anyone else??

 

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us....

 

Yes, you're right. It is the worst part.

[L Haven]

Are any other families dealing with PANDAS seeing any self-injury? When my son is in meltdown mode, when it's all at it's worst, and he is sobbing on the floor - he will sometimes bite his own arm, or slap his own face. It's really distressing. Sometimes he fights the urges, even grabbing one hand with another to stop the slap, but it's a huge struggle. Anyone else??

 

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us....

 

Yes, you're right. It is the worst part.

[peglem]

We have had a small success with making a "safe place" (padded all around) for her to go to when the urge to injure comes up. She will go there if we remind her, then we can go with her and help her avoid the other injuries. Getting her attention with chants, rhymes, songs that require her to do her part help to refocus her. And valium sometimes helps-I hate giving it to her, but she has ended up in the emergency room with self injury, so when I have to choose....what a Godawful choice for a parent to have to make!

[L Haven]

And Susan, my son has said awful things about himself too. And drawn pictures, or slipped notes under my door, saying & showing "bad" things about himself. It's scary to me - I never want him to feel that way about himself. And of course, logic doesn't help - that's the nature of this beast - so saying things like, "But if you're bad, why do you have so many friends?" never works, so I feel I have no way to "talk back" to the irrationality.

Lena

[L Haven]

Yikes, sorry for all the repeat posts. I think I get it now . . .

 

Lena

[thereishope]

At times, my son would hit himself in the head. Once he also opened the hamper, put his arm down and closed the lid. He wanted to make it look like he was pushing hard onit to injure himself, but secretly I saw he was really closing it all the way.

 

There were times he threatened to open the windows and jump. He also threatened to jump off the stairs. When he started with those threats, I was very honest with him and told him about reality of death. You don't come back, no one really knows what it's like. You don't jump then just get get up again like they do in cartoons. I also told him if he didn't die, it would be painful and he have to stay in the hospital. Thank God I might have gotten through to him because he never followed through. Sometimes, I wasn't sure if he was just trying to see my reaction so I wouldn't always run after him but secretly watch to see what he was doing, just to make sure he was safe.

 

I did hide the steak knives just in case. One of the hardest days was hiding the steak knives from a 5 year old to make sure they don't use it on you or themself. He never threatened that, but my fear was there.

 

But on the bright side, he hasn't done any of the above in quite awhile and it did not resurface with his last PANDAS episode.

[Stephanie2]

My son punches himself in the head when he is at his worst...

 

Stephanie

[L Haven]

Yes, we've hidden sharp things, too.

[T_Mom]

Yes, we've hidden sharp things, too.

 

 

Yes, the irrationality seems to be part of the whole picture when the brain is inflamed--Reading parent reports here, it seems that all of us who have gone through "severe" PANDAS, or perhaps even moderate PANDAS, have most likely feared for their child's safety--and felt a potential threat of some type at one time at least to self or others--it is that crazy. It needs to be taken seriously.

 

Self injurious behaviors are not normal. PANDAS is a sickness. A real physical illness that needs treatment. There have been kids that have gotten better--It takes time.

 

Antibiotics full strength for at least one month has worked for us and others-- and whatever else it takes after that. I know what it is like to hear your child say she feels like killing herself--to wonder if she will open the car door at 60 miles an hour driving to the doctor. To wonder if she will do something crazy to herself. This is nothing to play around with. If your child is having self injurious thoughts or behaviors and you suspect it is caused by PANDAS, I'd throw everything you can at it--most everything is relatively benign when compared to the possible outcome of unpredictable behavior.

 

One of the best things a doctor said to us early on was that our child was in "cognitive pain"...that was his response to our reluctance to try treatment with a burst of strong steroids. We took it to heart and did the steroid burst, (longer than the 5 day one, tapered up and down) At the same time we discovered antibiotics had a great effect (along with the steroid burst.)

 

We know there are possible treatments--

[L Haven]

For me, the self-injury/self-hating has been hard to talk about, so I appreciate your replies.

 

I also want to gently say, without sounding alarmist or negative, that I think we need to be aware that when a doctor hears of this symptom, he/she may take things in a very different direction, and I say this as both a psychologist and a parent.

 

Although my son was a neurology patient on the neurology floor, when we were admitted to Children's for IVIG we were met only by a psychiatrist (actually still an intern). My son's room had a very large man (a "babysitter) sitting in it in case my child needed to be restrained. He was to stay in the room with us. My child's hospital bed was fitted with restraints.

For two days we were barraged by psychiatrists pressuring us to allow them to admit my 10-year old to the hospital's locked psychiatric ward. This ward is for very seriously disturbed kids. If I left the room momentarily, on return I would find 2 or 3 psychiatrists talking to my child without my permission. They seemed incapable of understanding the difference between a teenager cutting herself with a razor blade, and a 10 year old with PANDAS. My son has never, ever been violent (I mean, this kid is nice to bugs); he hadn't even left a bite or scratch mark on his arm. And now my son's chart says PARENTS REFUSED PSYCHIATRIC HOSPITALIZATION.

[thereishope]

I am very careful how I share this part of history w/ doctors. If I share it at all. Suicide and attempts of suicide are on my side of the family. In the middle of it, I didn't want anyone to take him away. In hindsight, I don't want them to say I didn't protect him.

 

 

For me, the self-injury/self-hating has been hard to talk about, so I appreciate your replies.

 

I also want to gently say, without sounding alarmist or negative, that I think we need to be aware that when a doctor hears of this symptom, he/she may take things in a very different direction, and I say this as both a psychologist and a parent.