Child is in in hospital.. need help!

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Kailuamom
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17 Apr 2012, 9:58 pm

Starryeyedmom, I just wanted to tell you how sorry I am that it can be so hard sometimes. I'm hoping your sweet girl gets what she needs and gets some relief at the hospital. It's horrible to watch your child hurt, and especially when you know it doesn't make sense.

Most of us here have found that punishments haven't been effective when our kids are struggling with their conditions. Just keep working on prevention and a plan for what may work. I don't know about where you are, but it sounds like you need someone experienced in pediatric anxiety, since so many folks will want to address this from a behavioral perspective (which I hear doesn't work with anxiety).

Good luck, my thoughts are with you.



stareeyedmom
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18 Apr 2012, 6:05 pm

She home!! ! I am so happy to have her home today. I know that we have a long road ahead of us, but I am happy that she is back where I can watch her, and love her!



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26 Apr 2012, 11:40 pm

stareeyedmom wrote:
I have looked into PANDAS. There is one group of doctors in Arkansas that believe in this. They are about three hours away. I even called and talked to Harvard about it. They said treatment is geared toward children in the beginning stages. It has to be within the first 6 months because it is a fairly new diagnoses. I have still be researching, and looking into that subject though. I so appreciate all the suggestions! The hospital called today. They have added Luvox to her medicine, and took her off Zoloft. So she is taking Risperdal and Luvox. I don't know much about the drug.. Does anyone else??


Risperdal is an atypical antipsychotic that is used for treating positive and negative symptoms of bipolar and schizophrenia. I have known other autistics that take it as well. It helps with hallucinations, delusions, thought disturbances as well as social withdrawal, apathy, lack of motivation, and inability to experience pleasure.

It has relatively few side-effects compared to other antipsychotics, so it is often one of the first tried.

Luvox is an SSRI for the OCD side of things, which the risperdal doesn't treat. It is supposed to be one of the best meds to treat OCD.



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26 Apr 2012, 11:43 pm

Also, I would keep a mood chart for her to keep track of how her mood and behaviors change on the new drug. It is helpful for the doctor to see and if there are any concerns, you can catch them early. Maybe using https://www.moodtracker.com/ will be helpful? Sometimes it takes a couple tries before finding the right medication, so it is good to keep a log of her reactions, mood, etc.



Mama_to_Grace
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30 Apr 2012, 11:14 am

I am really surprised by this thread. I watched the video and kept thinking "Just throw it away!" Why are you asking her if you can throw it away? She is too young of a child to have this much control in my opinion. Yes, she will get upset. Yes, she will be very sad. She can't go through her life never being upset or mad. She needs to feel & experience those feelings now so she can know how to deal with them. She doesn't seem psychotic or violent in the video but I understand it may not be the whole picture. I just hope this isn't a case of a child who has no boundaries. Kids without boundaries can become quite unruly. Kids need boundaries to feel safe!! !



lostgirl1986
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30 Apr 2012, 12:26 pm

stareeyedmom wrote:
Thank you for the advice :) My daughter does not have bad thoughts about herself. She thinks she is perfect. The self-injury comes from her obsession from being perfect. If she finds a flaw, she takes it off. She tore her whole nipple off a few months ago. This last week, she pulled her big toenail off. She does not feel pain. She also has hallucinations. She won't sleep in her bed because she is scared. She thinks about death all the time. You can't talk to her about getting old.. driving.. living on her own.. ect. She breaks down. She tells me that she sees scary people with knives trying to kill her. She has also became obsessed with her bowels. She loves the smell. Anytime she passes gas, she has to smell it. She licks everything. She wipes her butt with her hand and licks it. She licks cans when we are in the store. She licks everything! We tried to get a dog but she holds them under covers. The dog became mean after a week with her. WE tried and tried to teach her how to treat the dog, but she is just mean to them. She doesn't even understand that she is in the hospital. She never expresses a desire to come home. She never says she wants to come home. She doesn't pay attention to her surroundings. I am on my way to work, but I will read your post more intensely when I get home. :)


Have you ever wondered if she might have childhood onset schizophrenia? It's rare but it's possible.

Hmm, I also agree with the above poster. I can see how upset she gets but if you don't nip it in the bud now then she'll probably just get worse as she gets older. Tell her that she must clean her room and the reasons why her bedroom has to be clean, to prevent sickness and critters, etc. Tell her that if she doesn't clean her room then you'll take a garbage bag and start throwing things away. It worked with me when I was a little girl.


I found some videos on childhood schizophrenia. There's also different kinds. She's probably not as bad as the majority of these but watch these and see if you see any similarities.

[youtube]http://www.youtube.com/watch?v=WjqRYgICgdU&feature=related[/youtube]

[youtube]http://www.youtube.com/watch?v=kMHnx2LDUfQ&feature=relmfu[/youtube]

[youtube]http://www.youtube.com/watch?v=k8mTaMiwqbI&feature=relmfu[/youtube]

[youtube]http://www.youtube.com/watch?v=QkEBisDXmTE&feature=relmfu[/youtube]

[youtube]http://www.youtube.com/watch?v=8e55AbDswe8&feature=related[/youtube]



azurecrayon
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01 May 2012, 7:14 am

Quote:
I watched the video and kept thinking "Just throw it away!" Why are you asking her if you can throw it away? She is too young of a child to have this much control in my opinion. Yes, she will get upset. Yes, she will be very sad. She can't go through her life never being upset or mad. She needs to feel & experience those feelings now so she can know how to deal with them. She doesn't seem psychotic or violent in the video but I understand it may not be the whole picture. I just hope this isn't a case of a child who has no boundaries. Kids without boundaries can become quite unruly. Kids need boundaries to feel safe!! !


(OP, your daughter is absolutely beautiful, i am glad she is home, and hope you do find the help that you need for her sake and your family's.)

i was surprised to read this and similar comments in this thread, here on this board.

what if we go into the room of our autistic kids and just throw stuff away when they arent there? stuff that has been carefully placed in a specific location and tightly controlled. why do their need for routines and sameness dictate our daily lives, should they have that much control at their age? do we listen to those judges at the supermarket that tell us our children just need more discipline? what if we tell our kids they just need to learn to deal with their emotions and not try to mitigate the meltdowns? after all, sadness is just a part of life and they should learn to experience it and move on, right?

hoarding and anxiety, especially at such an early age, is just as uncontrollable as autistic behaviors can be. you cannot reason away the unreasonable. its not something you can just deal with and move on. its overwhelming, leaves you feeling helpless, often uncontrollable, and can be completely debilitating.

and i can tell you from personal experience that trying to force a child like this to conform to neurotypical behavior will get you the same result demanding that from an autistic child does. taking or throwing away their hoarded items without their consent will worsen the issues, not cure them. even as an adult, one who is cognizant of their own hoarding/anxiety tendencies and behavior, they will struggle on a daily basis with these issues. and some days they will win, and others they will not.

a little more understanding and acceptance for the neuro-atypical, please. just because someone is not autistic doesnt mean they are neurotypical.


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partner to: D - 40 yrs med dx classic autism
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K - 6 yrs med/school dx classic autism
C - 8 yrs NT
N - 15 yrs school dx AS


Mama_to_Grace
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01 May 2012, 1:53 pm

How is throwing away a scrap of paper treating the child as Neurotypical? And who said anything about discipline?

I obviously do not know the child, but I did watch the complete video. I also have extensive experience with anxiety, panic, and adherence to routine.

If we allow the anxiety to control us, I would never leave my house. You cannot do that. This child might have something more severe going on but what I saw was a child panicking at the thought of throwing a piece of paper away. It is not an absolute truth that throwing a piece of paper away would cause lasting psychological harm.

Actually, the treatment for disorders (which we do not know that this is) like this is throwing the paper away. Not clearing out the whole room while they are at school. Not disposing of their cherished items. But showing them that you can throw a piece of plastic wrapper away and be ok. That it is not the end of the world. That you might be sad. It might be scary. But you have to do it.

Being "Neurologically Non Typical" doesn't mean you cannot cope with change. And while the anxiety may be uncontrollable, the reaction to the anxiety can be controlled, unlike autistic behavior.



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01 May 2012, 11:22 pm

Have you discussed the siezures that you mention in the you tube posting or any other symptoms with a pediatric nuerologist. I really think that there is something much bigger going on here. I think that the hoarding is minor compared to some of the other symptoms that you have described. I would also research and get second opinions on any meds to make sure that they are not adversely affecting her. I would strongly advise searching out a nuerologist who specializes in childhood disorders. It is at least worth ruling out.

My heart deeply goes out to you, and I hope you are able to find help.



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02 May 2012, 2:02 am

Stareeyedmom, I'm going to PM you. I think I know of an online group that may be a very, very big help to you with this situation. I didn't see the video, but from what I gather, this is a hoarding situation.

I'm going to send you a PM right now.


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SuSieee
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03 May 2012, 10:50 pm

What I did with my son was something had to come out of the room before something else is brought in. Worked when he was young but now that he's older I just close the door unless it can cause bugs, anything unhealthy. I don't EVEN begin to have answers, just some experience.



dinab71
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04 May 2012, 12:25 am

Mama_to_Grace wrote:
How is throwing away a scrap of paper treating the child as Neurotypical? And who said anything about discipline?

I obviously do not know the child, but I did watch the complete video. I also have extensive experience with anxiety, panic, and adherence to routine.

If we allow the anxiety to control us, I would never leave my house. You cannot do that. This child might have something more severe going on but what I saw was a child panicking at the thought of throwing a piece of paper away. It is not an absolute truth that throwing a piece of paper away would cause lasting psychological harm.

Actually, the treatment for disorders (which we do not know that this is) like this is throwing the paper away. Not clearing out the whole room while they are at school. Not disposing of their cherished items. But showing them that you can throw a piece of plastic wrapper away and be ok. That it is not the end of the world. That you might be sad. It might be scary. But you have to do it.

Being "Neurologically Non Typical" doesn't mean you cannot cope with change. And while the anxiety may be uncontrollable, the reaction to the anxiety can be controlled, unlike autistic behavior.



Even if you mask issues, ie with hording, or autism. its just a bandaid, and the underlying cause is still there, My aspie girl now, thanks to lots of speech therapy, appears completely normal to anyone who does not deal daily with her...which makes life nice and comfortable for everyone else, I didnt realise till a few years ago. It didnt change the way she thinks, sees things processes things or anything else. when she had a meldown as a small child, before I knew anything about aspergers or autism. I would put her in my lap, and squeeze her tight, till I felt her surrender....I bear hug of love...I know now...that its exactly the method Temple Grandin found eased her short circuits....but I digress....Had I not put her in all that therapy, she would likely be displaying more obvious odd behaviours that would have her extended family having to face that she is not the same as everyone else,

some people horde because they have never learned to de clutter....some people have a disorder that a symptom of is hording, and very usually other symptoms, like the self harm spoken about here....do you really think a child that has a disorder so severe that she doesnt feel pain, and can actually tear off part of her body, and has intense anxiety reactions to the mere thought of something of hers thrown away,,,can just be told its going...and thats it.....sure the stuff will be gone, but at what cost...

If she percieves reality differently to us..It cannot be addressed the same way as you would anyone else, even an autistic child.
perhaps the hording is an unconscious plee for control by the mind, or to her, asking that she toss away bits of paper..



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04 May 2012, 5:49 am

Trigas wrote:
[youtube]http://www.youtube.com/watch?v=sIy8-LpEuWg[/youtube]

Man that is like my daughter was at that age.
Looking at the situation, you seem to have a very intelligent little girl. I can tell that from the way she is variably using reason and intonation to try and placate you when she knows that you have come to take her precious things. She is anxious about this. The old adage one mans junk is anothers treasure is very true.
If it was me I would try to use reason to get some things chucked out, and for the rest bargain with her. E.g. With the green bit of paper that "we could make bracelets with" since she raised it as a reason to keep I would give her a day to do that, or it gets chucked out.
And for some things I would say "if we chuck that and that out then we can do X/Y/Z" - i.e. something nice (not more stuff!) such as maybe something nice to eat or fun to do.

Those are all strategies we have used with my daughter who is now ten. Having said that she is still something of a horder. Is over 60 cuddly toys too many? :oops:



MeshugenahMama
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04 May 2012, 12:51 pm

dinab71 wrote:
Mama_to_Grace wrote:
How is throwing away a scrap of paper treating the child as Neurotypical? And who said anything about discipline?

I obviously do not know the child, but I did watch the complete video. I also have extensive experience with anxiety, panic, and adherence to routine.

If we allow the anxiety to control us, I would never leave my house. You cannot do that. This child might have something more severe going on but what I saw was a child panicking at the thought of throwing a piece of paper away. It is not an absolute truth that throwing a piece of paper away would cause lasting psychological harm.

Actually, the treatment for disorders (which we do not know that this is) like this is throwing the paper away. Not clearing out the whole room while they are at school. Not disposing of their cherished items. But showing them that you can throw a piece of plastic wrapper away and be ok. That it is not the end of the world. That you might be sad. It might be scary. But you have to do it.

Being "Neurologically Non Typical" doesn't mean you cannot cope with change. And while the anxiety may be uncontrollable, the reaction to the anxiety can be controlled, unlike autistic behavior.



Even if you mask issues, ie with hording, or autism. its just a bandaid, and the underlying cause is still there, My aspie girl now, thanks to lots of speech therapy, appears completely normal to anyone who does not deal daily with her...which makes life nice and comfortable for everyone else, I didnt realise till a few years ago. It didnt change the way she thinks, sees things processes things or anything else. when she had a meldown as a small child, before I knew anything about aspergers or autism. I would put her in my lap, and squeeze her tight, till I felt her surrender....I bear hug of love...I know now...that its exactly the method Temple Grandin found eased her short circuits....but I digress....Had I not put her in all that therapy, she would likely be displaying more obvious odd behaviours that would have her extended family having to face that she is not the same as everyone else,

some people horde because they have never learned to de clutter....some people have a disorder that a symptom of is hording, and very usually other symptoms, like the self harm spoken about here....do you really think a child that has a disorder so severe that she doesnt feel pain, and can actually tear off part of her body, and has intense anxiety reactions to the mere thought of something of hers thrown away,,,can just be told its going...and thats it.....sure the stuff will be gone, but at what cost...

If she percieves reality differently to us..It cannot be addressed the same way as you would anyone else, even an autistic child.
perhaps the hording is an unconscious plee for control by the mind, or to her, asking that she toss away bits of paper..


Very well said-I totally agree.

Funny-I used to give my son the exact same bear hugs out of love when he would have meltdowns, and I think I even rocked him while I did it.