6 Year old now in mental hospital. Need advice.

OMBIENCE

New Member
I know this is a lot to read.. but please do!
Background: My daughter was the easiest of all my children. She didn't require much. We started noticing difference and she started exibiting some strange behaviors. She was getting up at night and taking things to her bed to tear apart. When she was four, she had a series of Urinary Tract Infection (UTI)'s and strep. She ended up waking up in the middle of the night with fever, vomiting and was incoherant and shaking. Everything she was doing was blamed on Urinary Tract Infection (UTI)'s. By the time she started Kindergarten, things were not good. The teacher complained that she wasn't payig attention. She was unsteady on her feet. She became aggresive. She was mean to her siblings. We would find piles of tiolet papers torn to pieces in her bed. Then she started tearing the string of blankets and clothes. She started seeing XXX Associates and was diagnosed with ODD. She had lost some of her speach, and regressing in most areas of development. She was soon seeing a neurologist that after many EEGs found a slightly abnormal spot. She started occupational and sensory therapy. We had several appointments every week with different doctors. They tested her IQ, which was superior and high superior range. They then diagnosed her with high functioning autism.
The tearing of papers and picking of strings soon turned to picking at her body. Her body was covered in sores she created. She stopped eating very much. She only would wear loose fitting clothing. She would wake up at 4 in the morning to exercise so she wouldn't get fat. She wouldn't talk to people that did not look perfect. She even told her father she didn't love him because he was fat. She still could not bathe or dress herself due to her getting so frustrated she couldn't complete the task. She had been on strattera; which calmed much of her outburst. Now they started her on Zoloft in hopes the picking would stop. For the first time in a long time, my daughter said she loved someone. Yeah, it was Justin Beiber.. but someone at least! She started to cry about things which I hadn't saw in a long time. it didn't keep her from picking though. She soon started pulling toenails off, and one of her nipples. XXX Associates wanted us to find someone better adapt to her needs. We found XXX Pointe. They worked on her picking and we followed all suggestions. She started finding places to pick that she could hide. She started picking her gums and her backside.

The past few weeks....
My daughter started acting really strange the past few weeks. She seemed hyper and inattentive. She also would want everyone to leave her alone and yell at people. She would cover herself in piles of clothes or what ever she could find. She still would smile and tell us things, but she switched to being angry very fast. She came home from school and had used scissors to cut all the skin from around her fingers. I talked to her trying to figure out what was going on, but she just answered that she didn't know. They took her scossors, but came home the next day saying she got them and tried to cut her face but it didn't work. It was very upsetting. We had called a group meeting a the school at the beginning of the year with everyone involved in her care so that they would know what they were up against. At the time, they didn't see anything to be worried about, and didn't pay much attention to our pleas. This past Friday, she got in the car and showed me a tooth as I started going through her backpack. I had just checked her teeth a few days before because she said she had a wiggly one, but there were not any loose teeth. As I looked in her backpack, I realized everything in there was about teeth. They colored tooth fairy pictures and toothpaste pictures. i knew this wasn't a concisence. When we got home I was talking to my husband about it when she came back into the kitchen with blood all over her. She had hit out another tooth. I called her counsellor immediatly, and left a message. Then called the hospital, and they wanted me to bring her in for assesment. When I got off the phone, I went to the bathroom to check on her, and she was hitting her mouth trying to get another one out. I told her to stop, but I got the same answer as all the rest of the times, " I can't!" She just couldn't control the urge. I got her dressed and took her to the hospital where she is now admitted. When she left, the only thing she was upset about is that the tooth fairy would not come. They have put her on Risperdal for psychosis and aggretion. I talk to her last night, and although she said her roomate is mean and everyone there is not nice, she never once asked about coming home. She realized she was on the phone and became insistant that she could call a girl in class and hung up on me. Even though I told her several times that she could not call out and she doesn't know anyone's phone number.

I am at a loss. This is my baby, and she is so far away from me in all ways. I am scared that this will be her future; going in and out of hospitals. I need advice or help here. I don't know what else to do. She is a sweet little girl that loves to be funny. Its like she just has this hex over her. I know that she is never going to be normal. I would love if maybe someone on here that has been through something similar could give me advice, or someone give their opinion on the situation. I NEED HELP with her!
 
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AnnieO

Shooting from the Hip
Oh, hon. :hugs:

I have no experience with this sort of thing, but many people on this board do. I'm glad you found us (but sorry you had to)...

I just wanted to let you know - you're not alone. Welcome... Someone with more info will be along shortly.
 

DDD

Well-Known Member
I read every word and am sending caring thoughts and hugs your way. How I wish I had an answer to provide or some specific advice but I really don't. What I can tell you is that your fear is normal. It's good that she is in a caring environment where they may find the medications and theapeutic support that she deserves and so obviously needs. Others on the CD site have had small children hospitalized and likely by Monday someone who has been there done that will reach out to you.

Meanwhile I am glad you have found us although I'm sorry you needed to search us out. This is a caring family of parents who support one another. I will include your daughter in my prayers. DDD
 

OMBIENCE

New Member
Thank you :) Right now I just feel like I have failed her some where along the way. I want to be sure that I am not missing something. I appreciate your comment. It's nice to know that people care.
 

buddy

New Member
OH bless your heart. Your poor little girl. I am sure you are very worried. Sounds like she has so much going on. She must have an incredibly high pain tolerance (my son has that to some degree and actually pulled off a toe nail too.... he also pulls hair out and scratches himself really hard, sometimes hits his head with his fist when upset). Did they do an inpatient eeg then? I sure would in part wonder about seizures with her. Where is the spot they found? Is it in an area of the brain that can be associated with this? Are they going to monitor to see if there are more that develop? Do they know what the spot is??? There are so many neurological conditions that can look like autism and Obsessive Compulsive Disorder (OCD) etc. I wonder too if they would consider genetic testing for her to make sure there is not some spontaneous genetic mutation that happened. (just throwing ideas out for you, but you probably have considered these things I realize ).

Did any of this get worse on any of the medications you have tried?

As I read your post I could actually relate to a little bit of it, though certainly I think your situation is pretty unique in many ways. But I can see how the (what in my mind anyway is...) autism part could trigger the Obsessive Compulsive Disorder (OCD) part (like you can really divide things up but just how my mind sorts it out). I remember when my son's school did their preschool mail unit.... that started collecting of envelopes, stealing mail, hoarding paper, gathering pamphlets etc... and he is 15 and just today at the store he came to me with about 10 pamphlets from all over including the in store bank, maps of the store, etc. When they did the tooth unit, he started brushing so much and flossing so much that his gums would bleed. Even with a sore mouth he would still do these things. He also picks his cuticles. He does not do as much damage as it sounds your daughter does, but it can make it so he can't function some days because once he has an itch or sore he is so distracted and bothered by it that he becomes aggressive and can't do school work or follow directions.

I pray they find some answers and you are helped to a better resource for working through these behaviors given her neurological issues too. Are there any autism treatment centers near you? Just wondering if any of their day treatment or residential treatment could be of more benefit to her? Is this new therapy center familiar with both developmental conditions as well as the Obsessive Compulsive Disorder (OCD) stuff? It is wonderful you are working with an Occupational Therapist (OT), she sounds especially like she has pretty intensive sensory integration issues...just my impression, I am not an Occupational Therapist (OT)...just going by what you are describing. I hope your insurance will cover some intensive work with them.

I know it is hard to start that realization of what kind of journey our very involved kids will have. The grief comes in waves. Sometimes I get so excited, we are on a good roll and he seems like he might be able to do some sort of independent living and other times I wonder too, will this kid end up in a residential placement with a ton of acute stays for medical intervention??? IT is really sad because under this, there is such great potential for a well adjusted life.

In your case, I just wonder if they are going to find something that will really give you some answers with those brain scans or with seizures. Is she on any anti-epileptic medications?? (many are used for multiple purposes including mental health, pain management along with seizure control). Just curious.

I am glad you found us, sorry we can't fix things as we all would love to be able to do that for each other but rest assured, many of us do know what it is like to have a kid who confounds many of the doctors and therapists as well as not having an easy ride in school. A child who breaks your heart because it is clear something is going on way beyond their control but that makes it so they just can't get along well. You are not alone.
 
T

TeDo

Guest
Ombience. First off, take a very deep breath and let it out slowly. She is only 6 so there is HOPE. You have time on your side and great interventions to help if we can get you on the right road. Welcome to the most caring and supportive place there is. You are NOT alone.

I think the Autism diagnosis might be right. It sounds like she has STRONG obsessive thoughts and she is also sensory-seeking. This is just my opinion but let me explain my thinking. Kids with autism are driven by the thoughts that seem to just *pop* into their heads. The HAVE to follow through with their thoughts or they become EXTREMELY anxious. They can literally be driven by these thoughts and compulsions. Some kids are easier to redirect than others and some thoughts are easier to redirect than others. It sounds like yours is one that might take more effort on your part. There are some medications that help with obsessions and with the anxiety put it is a **** shoot. Finding the right one(s) to help her will take some trial and error. There are also medications that will actually make things worse. For my son, that is Risperdal and Prozac. Others have had great success with these. Everyone is different in how they react to medications.

With the tearing and picking, that sounds like an obseesive thought but it could also be sensory. The teeth issue sounds a lot like "the tooth fairy gives money for teeth so I NEED to get my teeth out to get money" and the first one just fed the thought, especially if that one came out fairly easy.

Kids with autism think VERY differently than most people. What sounds logical to us can sometimes make no sense at all to them and conversely, what makes total sense to them makes absolutely no sense to us. Their brains are wired differently. Once I was able to figure out how difficult child 1 thought, things started getting a little easier because I learned how to approach various situations because I can *see* how he might interpret things.

My advice, and that's all it is, is to get the professionals to address the obsessive thinking and the anxiety it causes. I would also HIGHLY suggest you look into getting a THOROUGH occupational therapy evaluation to look at sensory issues. I think those would be great places to start.

Welcome to our little corner of the world but, like the others have said, so sorry you are in a place where you NEEDED to find us. I understand how frustrating and scary it is to watch your child go through these things and know you can't FIX them. For now take care of yourself and start reading more about autism, sensory issues, and find an Occupational Therapist (OT) that works with young kids. As for the school, immediately put a request in writing that she "be evaluated for special education services including but not limited to academic, psychological, behavioral, Occupational Therapist (OT) and speech evaluations". Send it to the Director of Special Education as well as the principal of her school Certified Mail with RETURN RECEIPT REQUESTED. This will get them moving on evaluating her in all areas and get services and accomodations going for her at school. It will also help limit the *trouble* she may get into at school in the coming years. It provides certain protections.

{{{{(((HUGS)))}}}} to you all.
 
H

HaoZi

Guest
OMW I couldn't read all of that *HUGS* to you and her and your family. Autistics can react to medications very differently than most people, side effects may be more pronounced or strange, getting the right medications is tricky, as you well know by now. "Right" is different for everyone, and in a growing child can change as they grow, as well. Usually (but not always) the wrong medications will go wrong pretty fast, and what's "right" at 6 might be "wrong" for her later. Straterra worked on mine until until a well-meaning psychiatrist tossed an anti-depressant into the mix, then switched that out for another medication. We're still working on getting the right mix, but it's nothing like what you're going through with yours. *HUGS* again hon.
 

OMBIENCE

New Member
As far as EEgs, the first one she had showed abnormal activity when she slept, but after two more, including inpatient; they were not able to find any thing sufficent. For that reason, the neurologist no longer sees her. She went to XXX YYY therapy for over a year for Occupational Therapist (OT), but they did not feel that she had any progress after a year, and said they did not feel her problems are related to sensory issues. She had a brain scan that came back normal. She had genetics testing that came back normal. Right now, she sees a psychologist, she goes to a social group, and has speech and reading at school. She is in a regular classroom, which i do not agree with because she is not being watched closely. The closest autistic facility to us is in Little Rock about an hour away. She also collects things much like your son does buddy. She will not throw anything away! She has things divided in her room by shape. I do thank you for the encouraging words.
I like the idea Tedo of sending a letter to the school with return reciept. Despite my efforts in working with them, they have not been able to return the favor to us. I am hoping that this is a wake up call for them too. I really am happy to get responses on my post and to know I'm not alone.
 
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buddy

New Member
oh I see, I must have read your post too fast, I thought it said they found spots... My son (years after seizures had stopped--so we thought--) had a long in pt. evaluation with a nationally known clinic and they said there was nothing. a few years later, and the wrong medication for years (they said it must be anxiety) and our neuro put him to another hospital with a friend of hers and this lady added leads in the areas that matched the symptoms he was reporting and ta da! night and day he was having tons of electrical activity that was very abnormal. He was diagnosis with simple seizures starting in the rt. temporal lobe and going to the lt. SO frustrating when they dont hear our concerns and I am sure it is frustrating to them too when they dont find things, but the difference with these docs was they really believed my son. They were going to treat even if they had not found something... it was too suspicious.

I have also been to a variety of Occupational Therapist (OT) clinics. Not all are the same. Some are pretty basic and others really think outside the box. Just sharing from a mom who has had the very same kid treated totally differently by different docs of the same specialty, different therapists of the same specialty etc.... Just have to keep searching till you find the best fit. And if it does not make sense to you...go with your gut.

If she does not have an IEP then yes, do what TeDo said. By putting it in writing it starts a mandated time line and they MUST respond and get the testing done within a certain time. Make sure they dont put you off saying she is doing ok academically. It is absolutely not true that they have to be behind in academics...there are other areas of school that qualify them and your daughter certainly falls into those behavioral/social/emotional areas. Autism Spectrum Disorders (ASD) is one of the educational categories so with your medical diagnosis to back you up she should fall into that category. Do not let them put her in an Emotional/Behavioral category with her Autism Spectrum Disorders (ASD) diagnosis, because the EBD programs can be wonderful for kids with those types of issues, but for kids with Autism Spectrum Disorders (ASD) they miss out then on a lot of research based teaching methods and interventions that are well known to support kids with Autism. They may be more familiar with watching for repetitive behaviors that are self destructive as well. I hope they cooperate with you and give her the support she will need because as you suggested in your first post, this is just the beginning. Things can get SOO much better when you meet and connect with the right people though. Your daughter sounds quite bright and I imagine there will be people out there, but it really stinks having to start and stop until you find the right ones. Hang tough, it is worth the effort.

Again, welcome to the warrior mom ranks on the CD board! You sound like you earned your Warrior Mom stripes long ago!!!!
 
B

Bunny

Guest
I have no advice, but I just wanted to say welcome to the board and that I'm sorry that you are going through all of this. Take a deep breath. You are among friends here.
 

tiredmommy

Well-Known Member
Welcome and (((hugs))) to you and your difficult child, I'm so sorry you had to find us. Before I comment on your dear daughter's situation I need to point out that we ask that no health care provider's or facilities be listed by name. This protects the forum from liability issues (I've edited out the facility names in your posts so far).

A few questions: does your daughter have any other medical conditions? My daughter had trouble sleeping and has allergies so her pediatrician tried her on Atarax. That's a first generation antihistamine that is known for causing drowsiness; he was hoping to reset her clock and get her sleeping better at night. It worked for a very short while but after a few weeks she was awake again at night and now my three year old was sneaking around the house, hoarding jewelry, small electronics, loose change and snacks in her room. She also took to stringing things together and tearing paper was a favorite past time. It was a compulsion, I believe, caused by the medication. Other medications can cause tics and compulsions too.

Has anyone considered Obsessive Compulsive Disorder (OCD)? Or possibly PANDAS? Her insistence on perfection may be a red flag. Also, her magical thinking regarding the tooth fairy may be a red flag (February is dental health month in most schools, by the way). PANDAS is a disorder causing Obsessive Compulsive Disorder (OCD) and/tics in children that has been linked to strep.

Don't lose hope. Use this time while your daughter is inpatient to get a little rest, reconnect with the rest of your family and do a little reading.
 

Mama Raygun

New Member
Ombience,
I am glad you found this site! I am also new and this site has helped me so much already! I also struggled with guilt and feeling somehow responsible for my sons issues, he's only 6 as well. You need to know you are absolutely not to blame for any of this! Your poor baby has a condition or illness that is causing this behavior, and you are doing the best thing possible for her by getting her treatment!!! My son also picks, just his fingers and toes though. He will do it until he bleeds and sometimes comes home from school with band aids on every finger. It seems like a compulsion when I see him do it , like he can't stop no matter if I yell, physically stop him or anything he's right back to it. I think he could do it for hours if he was left alone. Once again I'm so happy your on this site, doesn't it feel so much better knowing your not the only one going thru something like this?!? I will be thinking of you and your sweet baby!
 

Wiped Out

Well-Known Member
Staff member
Adding in my welcome and sending the gentlest of hugs your way. No advice but know that you are not alone. You will find much support here.
 

TerryJ2

Well-Known Member
Ombience, welcome. My heart breaks for you.
The thing that stands out for me, about your note, is that your daughter was easy until she got strep, and then she developed what seemed to be seizures and autistic attributes. Have any of the doctors checked for PANDAS?
There are many websites, but here's the first one, just to give you an idea: http://www.adhd.com.au/PANDAS.htm
 

mazdamama

New Member
Oh my!!! What a sad story. Hugs to you and your little girl.
I also have an Aspie with issues that can drive a sane person nuts but since I am already nuts...well, we work through things. As for the school...do what Tedo has advised about the certified mail. My guy will be 11 in May and is in the 4th grade. Just got his report card.....two Fs and the rest Ds and tomorrow he is supposed to do the FCAT writes.....Fl's dumb idea. His medications were just changed because of a throat clearing tic. Dr took away the abilify and added risperidol to his prozac and focalin xr. Me thinks it is the prozac causing the tics because they have gotten worse. Calling the Dr this morning. Pharmacist was concerned when I had the medications filled because risperidol can increase the effects of the prozac. Otherwise he is not hurting himself in the way your daughter does...just a constant annoyance...actually left church yesterday because no on around us could concentrate with this AHEM instead of AMEN. He is in a regular classroom with an IEP for special services but whether or not teachers follow the IEP is up to the parent anymore to make sure of.
My 11 yr old is in Residential Treatment Center (RTC) 5 hrs from home and that is a whole other story.

What saddens me is that these children CANNOT stop what they are doing no matter how hard they try.

Do you have anything like CARD there (Center for Autism related Disorders) there? Not only does your daughter need help but you need help in understanding more about what is going on in her mind.

Hugs to you and may you find the help you need.
 
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