I hope I'm in the right place...

[yweinst]

Hello,

My son is a 6 year old generally sweet and wonderful boy. He has been physically chronically ill since birth and has lived almost his entirely life in daily pain. Unfortunately, all the doctors visits, physical limitations and daily pain has led to psychological/behavioral issues. Two years ago things got so bad that he ended up needing an intensive psychiatric program but the inpatient side was not comfortable taking care our our sons medical needs so he did the outpatient day program.

With the aid of the program and the addition of abilify to his daily medications our son did very well. Fast forward to August and things became much harder again. It isn't to say that everything was smooth sailing before that but it was much easier. I don't know what happened during that time but the rages became more prevalent and he was having a harder time controlling his anger and how he responded. He would snap at little things.

We started more intensive therapy including normal psychologist, art therapy, and Occupational Therapist (OT) for his sensory processing disorder. Well last tuesday he completely lost it at his Occupational Therapist (OT) and ran her over with his power wheelchair. My son ended up being escorted via the BART team down to the psychiatric er in the hospital. From there he was admitted to the psychiatric unit.

In general when we weren't around he kept it together but during our visits he would get violent. The docs wanted to see him safe during visits before stepping him down to the day program. Unfortunately, they were unable to keep him stable medically and his special care doctor almost had to transfer him to the medical side of the hospital. We decided to bring him home on Tuesday. He is now going to the day program. In addition to the intensive program the psychiatrist has increased his abilify. It seems to be helping.

At this point the docs believe he has an undefined mood disorder and suffers from ptsd due to the trauma of his medical condition.

I am at such a loss. I look at my son and see two children: one the sweet amazing boy he is 95% of the time and the scary aggressive person he becomes when angry/frustrated.

We are doing everything we can to help him but I just feel so adrift at this point. We have been through so much between his behavior/psychological issues and his physical ones...

Yael

 

[TeDo]

You have come to the right place. There are a LOT of years of experience here and I hope someone that has dealt with physical issues can chime in soon. Our family has been blessed to not have to deal with those issues besides.

I know about the rages and the Dr Jekyll/Mr. Hyde in my sons. My question is if you have done any research into those disorders. Based on what you've learned, do you think the diagnoses are accurate or do you think there is something else/more than that. The PTSD can be a huge piece. Why do they have him on Abilify? That seems like an odd choice.

Anyway, just wanted to answer your question about being in the right place AND to offer my support. Others will be along but evenings seem to be pretty slow lately. {{{{(((HUGS)))}}}}

 

[yweinst]

Honestly, I don't know if the diagnosis is correct. I think that they are having a hard time diagnosing because the root of his physical disease is unknown so nobody knows if this is a componet of the meta disease, if his mood issues are caused by just living in a constant state of trauma and pain, or if it would have happened anyway (most do not believe this is the case).

As for the medications, what would be a more obvious choice? The abilify seems to help him. I know that at the time it was recommended another medication was also suggest but that particular medication was contraindicated for some of his medical issues.

Thanks,
Yael

 

[TeDo]

If the Abilify is helping and it's not contraindicated, absolutely keep using it. That's all any of us can do. If it works, leave it alone. If a dosage change takes you back to tolerable, that's a good thing.

I can only imagine the frustration and fears the poor guy lives with. Not only is he hospitalized for his medical issues, now he's being hospitalized for his behavior that he can't control. The poor boy has been through more than most adults do in their lifetime. {{{HUGS}}} to you all.

 

[InsaneCdn]

His first three years... were in and out of hospital, constant pain etc.?
Given the medical history... have you looked into "insecure attachment"?
This is not the same as Reactive Attachment Disorder (RAD).
But dealing with insecure attachment takes a very different approach than classical behavior problems.

Others here are more expert on insecure attachment than I am... but it might be something to think about.

 

[TerryJ2]

Welcome, Yael.
I'm so sorry for what you and your son are going through.
I was just reading about the BART program in NC in a book called The Boy Who Loved Tornadoes. A very different case history, but interesting that I know what BART is now.
I think insecure attachment and PTSD could be very possible.
And I agree, if the Abilify works, keep him on it.
I am familiar with explosive rages. In fact, I think everyone on this board is. They can really wear you out.
I have no idea what to suggest because I don't know what his physical issues are and what is contraindicated.
{{Many, many hugs.}}

 

[yweinst]

So Yoi has been dealing with pain since he was born and only 2 months ago did we get it under control. In terms of his medical issues he has autonomic dysfunction, dysmotility, reverse motility, eosinophilic disease, allergies, connective tissue issues, and chronic pain. The pain has led to stamina issues which has required a wheelchair for long distances and to conserve his energy for other activities. The rages started out as pain attacks when he was really little that would last hours and he would try and pull out his feeding tube (he only had one at the time). As he got older the pain attacks morphed into rages which only at first would occur when he was in more pain or his stomach was distended. Now the rages can come if he is just angry at something or frustrated. Nevertheless, if he is in pain or nauseous his tolerance of everything lowers and he becomes more irritable and more likely to rage.

As for contraindications a lot of the medications we have to be careful of more because of the autonomic dysfunction which can effect blood pressure and the heart. Otherwise we can try other things.

Can you guys explain more what is insecure attachment? It sounds like something i should look into. He has a really low self esteem and gets really upset if we praise him or tell him we are proud of him. He told us the only thing he likes about himself is his name.

Thank you all so much!!!

Yael

 

[buddy]

look first under causes of Reactive Attachment Disorder (RAD) (reactive attachment disorder.....insecure attachment is part of a spectrum of attachment disorder as I understand it. Reactive Attachment Disorder (RAD) covers it all but people usually think of Reactive Attachment Disorder (RAD) in terms of a child who is truly unattached and has dangerous and abusive behaviors . ) most info is on adoption sites because of the obvious trauma separation from birth parents causes along with other care giving issues in adoption and foster care situations. This site has great info about all causes and the whole spectrum.

if you look on that site it talks about the cycle of bonding and why chronic pain interferes with bonding. (infant cries, parent fixes, trust builds) my son too had chronic pain and he was actually punished for screaming(I got a video tape showing a seizure from a brain mass---they didn't know that then----and he screamed and they put him in time out with firm words. had they known,I hope they'd have cuddled and reassured him but even then if the pain doesn't stop how can they learn that mommy makes it better? there is no blame, it is a situation no one can control,so sad!)

the site discusses ptsd too. the types of attachment problems including insecure attachment is discussed.


its probably an easy assumption to think some level of this is there because of the multiple care givers and chronic pain he has survived. if so, an attachment therapist( typical therapists don't do well with this, you must be involved, can't be done with a therapist and the child working together) could really help IF the therapist can be creative with someone at his developmental level and physical condition. it's at least a road to check in case it could help. It may not fit but is a path to check.


you made me laugh a little(I know it's not funny though) when I occurred his running the Occupational Therapist (OT) over. guess he needs a remote kill switch our something, lol. we have put pillows under wheels to stop aggressive kids during therapy times.

you sure have had quite a journey......I hope you feel comfortable here and please know you're not alone!

 

[TerryJ2]

Pillow, Buddy--what a great idea!