Need Help now

[cfa3]

I am reaching out here to see if anyone has any advice for me. I have posted here a few times before and am amazed at how wonderful this board is. Short re-cap, I have a 10 yr old boy, not sure of dianosis but has had several since 2 yrs old, Pervasive Developmental Disorder (PDD) not otherwise specified, ADHD, bipolar, Obsessive Compulsive Disorder (OCD), anxiety disorder etc. Currently become much worse the last year. He has always always had a violent/explosive streak, but somehow we (me andhis stepfather) have managed things, encurring some bruises and bites along the road. He has been declining though and this year I had to finally take him out of school because even though he has an IEP, his behavior was so explosive and destructive that I was getting calls every other day literally from school. Am homeschooling this year. He has been doing terribly since June, very agitated, upset, super super emotional, hysterical, very bad Obsessive Compulsive Disorder (OCD), fixations, obssessions, aggression, explosions, attacking me and stepfather, yet times throughout all this when he is FINE, pleasant, sweet, happy, But the bad stuff is just starting to outwiegh the good.

Anyhow, he has started to have these regular explosions which involve becoming agitated over something, usually a consequence from me or not having enough time to finish a computer game or any form of dealing with something he doesnt like, and the agitation will start to mount and mount and mount and meanwhile I dont know what to do and at times become upset at him myself making things only worse of course - anyhow, the agitation will then reach a point where there is no turning back and you can see the explosion around the corner. He will just attack and it is literally like watching some animal on the TV attacking in defense. He will latch on and bite til you are bleeding, will rip my hair out, kick, me, throw anything he can at me, tear up the house, on and on and on, this lasts for 2 hours, maybe 3, then the calm down takes about 2-3 hours. We have had about 5 of these since June. And they are happening more recently. Tried medications for only like the second time in his life this summer. EVERY medication has either been a disaster or done nothing to help. We have been through about 5 medications since mid July! He is very sensitive. I often wonder now if his problems and these attacks are more psychologically driven than psychiatric. Maybe thats why medications only seem to make him worse?

So on to the point here, and my desperation. I have NO help! He has a seriously crappy team of docs, a lame neurologist who never has anythign to say, a psychiatrist and a therapist who are covered by his medicaid as he and we do not have private insurance. If anyone is familiar, there is nothing of worse quality than the public mental health system. None of them really help us. In crisis, which we are in now and have been all summer, I am just told to take him to the local kids psychiatric hospital which is known to be a nightmare hell hole and i will not take him there. We live in a small city in SW FL, I have no money for a real doctor with some credentials and a history of actually helping children, I have just about no family to turn to, my husband is of zero use and I am actually hoping he will leave us because he is making the situation worse. Point is, I dont know what to do! There is no help for people in crisis unless youre rich. I feel that if I admit him to that hospital he will suffer trauma from it, its poor quality, he has bad reactions to medications anyway, and it will start a cycle of my son being in and out of hospitals. The saddest part is that he has been fine, he has been ok and functioned very well a lot of his life.

What would you do in my shoes? Does anyone have any advice? i am almost essentially alone save for one sister a few hours away from me. I am sorry for all the melodrama but I am being beaten up literally by my son and living in a state of constant panic and dont know what to do. Thank you to any advice at all.

 

[tictoc]

Hi,
I'm so sorry for your situation. It does sound hard, especially with not having school to provide a break for you.

I'm fairly new to all of this and there certainly are others on this board who know much more than I do, but I have a couple of questions. What medications has your son tried? How did he react to them?

You definitely need a team of doctors you can believe in. Just wondering if there are any medical schools, universities, or teaching hospitals in your area? If so, you might be able to get care through a program where psychiatry residents are trained. My son recently got accepted into such a program. The program doesn't accept any insurance and charges clients based on a sliding scale (some people pay as little as $20/visit). My son sees a psychiatry resident and his work is overseen by the director of the program. The director reviews the resident's session notes and, if the need arises, will be able to view video of my son Thus far, we are happy with this and it is fairly cheap.

Good luck.

 

[BusynMember]

Hi there. Sorry about all your trouble. I live in a small town in WI so I understand that the quality of care probably isn't close to where you live.

I remember your post. Can you travel a bit to get answers?

I would dump the "bad doctors" because your son is hurting and needs a firm diagnosis so you can learn how to parent him with his disabilities. If he has Pervasive Developmental Disorder (PDD) he will need a lot of school interventions.

University hospitals are wonderful and most always take Medicaid,which is how WE got to go. We don't have money either, trust me. I highly recommend going to the closest university hospital, even if you have to drive several hours and stay overnight at a cheap hotel, to get a neuropsychologist (not NEUROLOGIST...very different) evaluation and also see a Psychiatrist. They usually have "cutting edge" treatment and are teaching facilities and research facilities. Maybe after a few visits, they can aid your local doctors over the phone. Pervasive Developmental Disorder (PDD) is a form of autism and these kids do not have psychiatric problems and in my opinion don't belong in psychiatric hospitals so I agree with you not putting him in one. Often in a psychiatric hospital, a Pervasive Developmental Disorder (PDD) kid will get a wrong psychiatric label and then you have made it worse.

in my opinion it makes no sense to keep going to people who aren't helping, and you and hub seem like you're having a hard time. And I really feel bad for the little one. He needs to be diagnosed right and given the correct treatment.

I have nobody near me either. It's hard. (((Hugs)))

 

[rlsnights]

If it is a possibility for you to travel to Bethesda, Maryland, I would contact the NIMH about getting him into one of the pediatric mental health research programs there.

They are always looking for kids whose families are willing and able to bring them to NIMH and put them inpatient for several weeks. They provide accommodation for the parent nearby and are likely to cover your travel expenses too.

Once they have evaluated him with-o medications they will try different medications and attempt to stabilize him before you take him home. It's my understanding that they will also coordinate care with your local doctors which will pretty much take care of the crappy medical team issue. The local docs will get put through the wringer if they refuse to do what the NIMH team tell them to do.

It's a big commitment but it may be your best resource given what you've reported.

Here's a link to the page about bipolar research studies. Sounds like your child would be a candidate for the severe mood and behavior dysregulation study. There may other studies that are a better fit but it will get you started. You can call (301) 496-8381

http://patientinfo.nimh.nih.gov/BipolarDisorderPediatric.aspx

You and your husband are wonderful and clearly doing your best to do the right thing for your child. Many people would have long since abandoned such a child to the child protective/foster care system. Hang in there - I would call NIMH tonight and leave a message. They may not call you tomorrow but probably you'll hear from them on Monday.

 

[cfa3]

I just want to quickly thank each of you, ive printed each of your replies and will call NIMH and follow up on the other suggestions. I cannot begin to thank you enough for replying to me. Sometimes like this the darkness is so thick its hard to see out. Thank you so much.

 

[susiestar]

You have gotten some great suggestions. I would look into the Bethesda NIMH thing - they do great work.

Do not rule out a psychiatric diagnosis on the basis that he has Pervasive Developmental Disorder (PDD) or another autistic spectrum disorder. Kids can have TWO or more problems. Just having Pervasive Developmental Disorder (PDD) does not rule out other problems. My oldest has Asperger's but with-o treatment for unipolar depression he would kill himself. It has been that serious for years. With his current treatment he is just fine.

I am sorry things are so rough. With the physical aggression you really NEED to make a safety plan. Here is where you go, what you do, here is what husband does, where he goes, here is where the other kids go and what they do. Kids should have a phone so they can call 911 if you tell them to.

Talk to the local police. Let them know you have a child with Pervasive Developmental Disorder (PDD)/emotional problems and if you call he will NEED to be transferred to the local psychiatric hospital. Otherwise he could end up in juvenile detention.

Don't be so scared of the psychiatric hospital. We were on medicaid and my Aspie was 11 when he was admitted. This was not an acute care hospital. Those have a 2-5 day average stay. Wiz was there for 4 months. It worked miracles. Really got through to him. It was not as pretty as the private acute care psychiatric hospital. The games and books often were missing pieces. The cassette recorders never had batteries or headphones. We provided those things for while Wiz was there. Happily. The psychiatrist was a jerk, but once he got over "my nosiness" at wanting to be at meetings where treatment was discussed and decided, he worked well with us. It WAS a battle the first few weeks. Very few parents had any interest and fewer had any idea what they were talking about. Staff was great to us once they figured out that I was NOT the "my child would never do THAT" kind of parent. My kid WOULD do that, and take it to the nth degree past where most kids stopped.

Of all the facilities we went to for help, the psychiatric hospital was high on the list of positive experiences. HE hated it, but he also learned a LOT and was able to use what he learned.

Just make sure you are a regular face while he is in the hospital. I really think it may come to that, just from a safety standpoint. He isn't safe to have at home with this much violence.

Instead of thinking how upset he will be NOW if you put him into a hospital, think about how he will feel in a few years when he realizes all the ways he has brutalized you. How much guilt will he feel? How much will he hate himself for hurting you? What will he do with the guilt and anger (towards himself) that memories of his actions will give him?

I have nerve damage in one hand from one rage where I had to get him to focus on me rather than on my other kids. I was the only adult at home and he wanted to beat his sister bloody. I had my other kids go into my room and lock the door while I kept Wiz focused on me.

Wiz feels so horrible about hurting me that way. He will take my hand and rub it gently or get a hot pack (bag of rice sewn up and heated in the microwave) and wrap it around my hand. He even kisses it "better" - and he stopped giving kisses when he was 8.

When I put him into the psychiatric hospital, and later when I had the Sheriff remove him, a big part of the reason was that if he hurt one of us badly or killed us then he would hate himself forever and probably WOULD kill himself. I couldn't handle that, so I did what was needed to protect us ALL. It came down to that.

I don't know if you are at that point. Or if you will reach that point. But hopefully you will see hospitalizing him in something of a different light.

Hugs,

Susie

 

[cfa3]

susiestar:

Thank you. tonite my husband told me that i am the cause of my sons craziness because i have some of my own issues, and i wonder if thats true. i know thats so sick. I am considering the hospital. its just sucha **** hole. Is the one you had to take your child to a quality facility? The one here i do not trust, but maybe i dont have a choice, as he is being very violent and i am not safe. the sad and bewildering part is that when he is not raging, he is really a sweetie and you couldnt tell he could turn into that animal-like person attacking you. Its so confusing, I just keep thinking maybe the attacks will stop, he seems so "OK" when he is not agitated and escalating to an attack.

thank you, I will think about the hospital. Thank you so much.

 

[Star*]

cfa3

Hi there - first time poster to you here.....long time advocate for personal therapy.

Brief personal history - my ex was horrible and my son was 5. I personally didn't think I had ANY issues. I stayed in an abusive marriage for 13 years. I finally got out...but had started counseling (secretly) in my 11th year of marriage and got the courage to leave him. He and his Mother took my son against my will, and I went and got my son some months later. My thoughts were if I was out of my marriage - and my son was out of the violence? The bad things would be over. Not true.

So my son began to act out in school. (understatement) I got called almost every day from work to come get him. The school therapist recommended a psychiatric evaluation. Okay - whatever. The psyc. recommended medications. Okay - well that should fix him. Not true. Sixty five medications, thirteen placements in Residential Treatment Center (RTC)'s, Numerous Group homes, Five or more psychiatric hospitals, uncountable therapists, counselors, psychiatrists, and everything under the sun and moon -including taping chicken livers to my elbows and dancing in the moonlight (the Chicken Liver Dance as it were) lol....he's 19, a convicted felon and just NOW starting to show a teensy bit of maturity - BUT....he's still the same person with the same temper and same crusty attitude....and should be in therapy for anger management for the rest of his life.

I personally was blown away and hurt, angry, sullen, growly, disagreeable, B($#*^%& when someone after my 7 years of PERSONAL therapy said - I think it would be good for you to have MORE therapy to deal with your son. I thought....ARE YOU ....(well can't type that here my tongue would fall out and I'd be banished for thinking what I wanted to type from the board for bad language) but ARE YOU KIDDING - came to mind? So....I squared myself up in the therapists chair and very matter of factly said with raised eyebrow...."OH....now the problem is me?" and the therapist said even MORE matter of factly "Well, partly...and if it is? Don't you WANT to be the best parent you can be for your son?" and it just hit me like a ton of bricks...I mean we're all vain - but this was like a slap in the face. So I went. Begrudgingly at first and then about 6 months into it - I fell in love literally with going - it was my EXHALE from the worlds ****...and I left there feeling so light and happy - and validated....and sorted.

So yeah- it hits you like.....ME? MEEEEEEEE??? WTH? ME? I'm the one holding this ship together and now you're all pointing at ME? And yeah - YOU. Beeeeeeeecause....HIM (points to boy) takes it out (his whole world) on YOU because he has no better learned coping skills....and YOU are the only one that HE can BLOW up at for now and be safe in doing so becauzzzzzzzeeeee YOU aren't going to LEAVE him...you'll always be there. See?

Just call it your once a week uncorking as it were......and not THERAPY FOR CRAZY MOM.....and adjust your thinking. YOU NEED THIS. You'll see what I mean about 6 months from now when you handle a situation in your home with logic and not yelling....it's like you turned into Harry Potter or some other magical creature and you think.....MAn am I good or what? Then THAT is worth the price of admission to all that - Uncorking sessions. (I say uncorking at first because all I ever did was wine er....whine) eventually it became where I could call it therapy....lol)

Hugs & WElcome....
Star

 

[cfa3]

Star - It has taken me a while to get back here to thank you for your post. I am actually a great believer in therapy, I just havent had the means to go. Otherwise I would. The only places where I currently live that have low fees or sliding scale are religion based and I am not religious. But your post was awesome by the way!

The update to this situation is that #1 I ended up having to call 911 on my son 2 weeks ago. they Baker acted him and took him to the local child psychiatric unit and he stayed for 2 nights. What came out of it was that I realized it was NOT a bad thing, we all needed it to happen, and even he saw he could get by without mommy even though he was miserable. It also served other purposes like that, and mostly just seeing that we went through that and it wasnt a nightmare. Things were so bad. They didnt offer any services or help when he got out but they did put him on a medication that we think may be helping. Anyhow, to whomever said it isnt a bad idea was right, and I was so against it. He has had 2 more violent attacks since and the last one, a week ago, I handled totally differently and reacted totally differently anf I think between that and the new medication and who knows what else, he hasnt had an attack since and is a lot less agitated. He is so complicated I never know what to make of the changes.

Anyhow, also think I need to move to a place with more Occupational Therapist (OT) offer in the way of doctors, services and community. Where we live is truly a small place in terms of the quality of and availability of help for kids like my son. We are planning a move in June. Also called one childrens hospital and we do have a neuro appointment in January. Am still trying to find a neuropscyhologist that is covered by his medicaid and havent yet, but am not done looking either. Am hoping being in a more metropolitan place will be the right choice despite the horrible economy and stress of moving. Also must find a school for next fall, I am hanging on by a thread with this homeschooling that we are doing, but I really had no other choice with that. Still trying to just cope with the trauma and the daunting reality of how much help my son needs and how I am resorting to yelling and losing ALOT more than Id like to be because I am burnt OUT.

Thank you SO much, all the things I am doing now and ideas came from this wonderful forum. I hope at some time to be able to help someone else here the way you all have helped us. thank you.