Judytor?

tiredmommy

Well-Known Member
Has your difficult child settled a bit from the stress of the holidays? I hope things are going better for you. I know my daughter does best with a fairly strict routine at almost eight years old, but really needed her schedule to be rigid when she younger.
 

judytor

New Member
Hi there and thanks so much for checking in :) We've been having a rough time still.
Boo is still raging often. The word "No" or "Stop" to him sets him off every time :confused:
This morning I was determined to "hold" him in a Time out (not a punishment but a "you need to stop destroying the house and hurting everyone). He is honestly very strong and very heavy. He's only 4 but he's got to be close to 60 lbs and when he's thrashing it's hard to pick him up without getting socked or bit :( He managed this morning to knock over my venti iced mocha off the computer desk onto the carpet......then threw the lamp in my room and in the living room. He threw two big cups of ice water on the floor and this is all before 11am!
He's calm now but who knows what will set him off next :confused:

I still haven't talked to the psychiatrist. We've been playing phone tag. I am going to have him paged again today. I feel up against a wall right now. We have very limited resources around here (So Cal) for partial hospitalization programs.
The thing is, there are several hospitals BUT....there are very few physicians, etc qualified to help Boo. He is very complicated. Most of the evaluators he's seen has said he's needed behavioral mod. BUT they are WRONG. He does need behavior mod but FIRST they need to treat his extreme anxiety. He responds to the behavior mod because he's paranoid they will hurt him if he doesn't. He is convinced everyone is out to hurt him. It's just a mess :(
 

tiredmommy

Well-Known Member
You are most likely right about behavior modification. It simply won't work if a child is unstable or too sick to comply.

We had some limited success with behavior mod with Duckie when she was quite young, but her old behaviors kept coming back. We finally starting making some real headway when we treated her allergies aggressively. While one wouldn't think of allergies causing a child's behavior disorder we found that she couldn't behave well when she was sick.
 

judytor

New Member
You are most likely right about behavior modification. It simply won't work if a child is unstable or too sick to comply.

We had some limited success with behavior mod with Duckie when she was quite young, but her old behaviors kept coming back. We finally starting making some real headway when we treated her allergies aggressively. While one wouldn't think of allergies causing a child's behavior disorder we found that she couldn't behave well when she was sick.

Do you mind if I ask what kind of allergies she had? I've often thought about going gluten free or dairy free and have been told it can make a huge difference but Boo is very picky about what he'll eat........
 

tiredmommy

Well-Known Member
Food pickiness is most likely coming from sensory dysfunction. Duckie (at one point) tested positive for every food the dr tried except peanuts. She also is still allergic to the more common allergens: dust, pollens, mold, etc. But thankfully not cats. She is still allergic to all her inhalant allergies, but less so. Her food allergies weren't as bad as her inhalants, and she completely grew out of them with the exception of a borderline allergy to soy.

I think it would be prudent to look into it, however Duckie is unusual compared to most of the kids on this site. The most common problems seem to be neurological or mental health problems, fetal alcohol or in utero drug exposure, early abuse or neglect by a caregiver or another child or other medical problems (like Duckie). She seems to have escaped the worst of her genetic make-up and one day may grow out of her difficult child title.
While I would rule out medical illnesses (including sleep disorders) I would also aggressively look at mental health (mood disorders, etc) and neurological disorders (like autism). Pay special attention to sensory problems as they seem to be present in almost all our kids.
 

judytor

New Member
Thanks so much for the help :) Yeah, Boo has quite a complicated list of contributors to his challenges. His bio mom had mental health issues. She also drank and did drugs while pregnant. It's a mess. I know the majority of his issues stem from his genes and prenatal environment but I'm always searching for ways to somehow improve it with diet, etc.
 

tiredmommy

Well-Known Member
I would find someone that specializes in Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) or drug exposed children then. My very limited understanding is that these kids get very little benefit from behavior mod and often need specialized learning environments.
 

judytor

New Member
Yeah, I actually have been in contact with some Fetal Alcohol Effects (FAE)/Fetal Alcohol Syndrome (FAS) specialists. The problem is this. While he definitely has alcohol related brain damage, he also has a mental illness AND autism.
So it's hard for us to know how to treat him. The kicker is , there is only a handful of physicians around here qualified or educated enough to treat him.

So far, the basic therapy (play therapy), behavior mod, school programs, etc are all way off when it comes to helping Boo. It's like taking a child with cancer to a podiatrist for treatment.

It's all so frustrating......and then the school district doesn't understand why I wouldn't just put him in their ED preschool......ughhhh!
 

tiredmommy

Well-Known Member
I would get appointments and placed on the cancellation lists of any and all qualified professionals at this point. My gut feeling is that you will need a qualified child psychiatrist and a really good developmental pediatrician for Boo, but I'm just another parent. Try looking at universities or childrens' hospitals, but there is a serious shortage. You should consider getting a multidisciplinary evaluation where you get as many eyes as possible looking at the same time.

Not to scare you, but many of the evaluations and treatments for our kids end up not covered by insurance. You may want to start looking into a state medicaid waiver to help with the cost.
 

judytor

New Member
Thanks :) We have a great psychiatrist and he is the only one who really gets what's going on. The hospital he is at (a big research and teaching hospital) has the only partial hospitalization program around for little ones. We are on the wait list but it could be a looooooong wait.
He's had tons of evaluations by different people but when you say multidisciplinary evaluation, do you mean by several people at once? We had one done (sorta) by the school district. It was just a psychologist and a speech therapist. (what a joke that was).

One good thing is I made an appointment with ANOTHER neurologist today....and this time this one comes recommended by Boo's psychiatrist so I feel really good. We will see her next week.....which is really quick. I waited for six months for our last neuro and he basically told me Boo was spoiled. That was a total waste of time and I remember driving home bawling because I couldn't believe how ignorant trained professionals can be :( (sorry for the ramble.....I could talk about this forever because it's been such a long road)
 

tiredmommy

Well-Known Member
The same thing happened to me with a neuro! I was infuriated!!!!

I meant a private MDE, like through your psychiatrist's hospital rather than the school.
 

judytor

New Member
Boo's psychiatrist recommended we get him evaluation'd by the Autism clinic at the hospital we see him at but it's close to $3000. They don't take insurance either....
Other than that, we have so many reports from recent evaluation's.
I would like an evaluation that included a speech, Occupational Therapist (OT), pt, and psychiatric all together but I'm not sure how to go about that. I'll talk to the Dr. (if he ever calls me back....)
 

SRL

Active Member
If you haven't already, I'd suggest contacting your nearest Autism Society chapter. Parents there will have a good idea of less expensive routes to go for evaluation in your region.

http://www.autism-society.org/

It's pretty uncommon to get all the evaluations done at the same time under one roof, but within a short time frame can be beneficial to pulling it all together.
 
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