4 yr old Pervasive Developmental Disorder (PDD)-not otherwise specified

[Mamaof5]

I haven't posted about this yet because I've been trying to process the incident with her from two weekends ago. My 4 yr old difficult child is Pervasive Developmental Disorder (PDD)-not otherwise specified, hearing impaired and possibly more. The psychiatric path says atypical autism (the not otherwise specified part) but we're about to start testing for genetic mutation syndromes such as Williams Syndrome (FISH test) and Fragile X Syndrome (this has a co-morbid of Pervasive Developmental Disorder (PDD)-not otherwise specified in some cases).

I'm leaning to Fragile X because of the symptoms that they describe in the 5 sections of the genetic disorder. Particularly the following along with social issues, anxieties and impulse control problems along with her fire starting (sensory related, particularly to heat) and her inability to associate the fact that doing things wrong well is wrong. She can't tell right from wrong for the most part and does not learn "lessons" or remember them at all.

People with Fragile X syndrome also share certain medical problems as well as many common physical characteristics,2 such as large ears and a long face. In addition, having Fragile X is often associated with problems with sensation, emotion, and behavior.

Source

She set her bed on fire (two weekends ago) when she found a lighter from I don't know where. We lock box our lighters, have no matches in our house (to easy to pocket for her) and we don't have things like incense or candles in the house anymore because it's too much of a temptation for her. We take shifts sleeping to keep her from harming herself or others or wreaking havoc in the house hold or walking out the door at 3 am in the morning. Normally, if we're both too tired we bring her into our room to sleep (I'm a light sleeper, small movements wake me up instantly - you can imagine I don't get a lot of good sleep, have always been a poor sleeper).

Her psychiatric pathologist knows about these issues, I'm tired of the "waiting game". We've discussed extended release clonopin at night to sedate her and possibly an anti-psychotic with it. Fragile X, 20% have seizures, I guess she's in that other 80 percent because she's never had one to my knowledge.

What gets me is the statement (from URL source above) that "mothers who were exposed to environmental poisons" may have children that exhibit the FXS symptoms and can contribute to the genetic illness. I had a radio-active isotope bone scan done when I didn't know I was a few weeks preggo with her. She was born a frank breech, prolapsed cord, O2 deprived (over an hour) with a uterine rupture (full frontal, longitude rupture). I'm just at my wits end with her behaviors, totally and utterly at my wits end. I can deal with my 9 yr old difficult child with his ADHD\ODD\learning difficulties more than I can with her. I need them to hurry up with this...the kicker - lack of doctors here for any medications that they do recommend ...I have no doctor for the family because I'm still on the waiting list even after a year of being here in EL.

*sigh* how do you seek out help when everything you seek out just isn't fast enough or won't be in time to help..it's a damned if you do and damned if you don't situation here. Oh, no I won't cart her off to a temp foster care situation for a "break" because I refuse to abandon her and give her some sort of complex that says if I act badly even if I can't help it people don't want me. Nuh-uh and the case manager (intake worker) agrees with me on that note.

 

[Marguerite]

I don't think the radioisotope scan would have been enough to do this sort of damage. They use radioactive Technetium which really does go straight to the bones. Not the brain. More likely, if any damage is responsible, would be the traumatic birth. But even that has me feeling sceptical.

Finding a cause won't fix the problem, it only gives you something more specific to be angry about/feel guilty about.

We also went through the phase of checking out our boys for Fragile X. It was negative. Before the results came back negative, i was convinced both my boys fit the profile completely. After it came back, and after I'd had time to really think about it, I realised that there was little really, of comparison.

We had a wanderer in difficult child 3. We had to instal a solid fence that was also unclimbable. We then had to tie the gates shut with octopus straps. You do what you have to do, find what you can use to thwart them. It feels reactive rather than proactive, but all we can do is the best we can do. You can't do more than that.

Marg

 

[SRL]

Hi Mamaof5--I''m glad you found us. I'm sure you are exhausted and hope the docs will get on board for you soon.

Door alarms are helpful to some parents of wanderers.

Is she plugged into the school system or other early interventions? At least that would give you a break.

We got this disc for our rabbit a few years ago but I told one of the moms here who had a heat seeker, and she loved it. It comes with a fleece cover, and heats up in the microwave. Our bunny thought it was just okay but the mom said her girls loved it.
http://www.amazon.com/gp/product/B00008AJH9/ref=oss_product

Hang in there and please start thinking about some ways you can get a break. Do you have a university nearby that you could contact to find an education major to help out? Or a younger student, even an older homeschooled girl with lots of sibling experience might be a help to you.

 

[Mamaof5]

She goes to daycare 5 days a week. 9AM to 3PM since Dec 7th 2009 (yeah I remember that day clearly enough - I associate it with guilty relief).

She has a speech therapist, speech pathologist and a psychiatric pathologist. They are testing right now for the not otherwise specified part of the Pervasive Developmental Disorder (PDD)-not otherwise specified. I have a weighted vest, heat pads that you mentioned and we lock box everything that is dangerous.

Weekends are hard because it's not her usual schedule during the week. We try to do stuff with and for her and have her outside in the sunshine in good weather most weekends. Kind of trying to wear her down for bedtime later but it seems all that does is wear us down rather than her.

 

[Marguerite]

How is she with a written schedule? A chart of sorts, something up on the wall that she can interact with? Velcro dots are made for this kind of chart - you put the tasks accomplished (using compics or similar) in the "Done" column ext to their matching picture, so she can see what her next task is.

We went through quite a phase with difficult child 3, with labels and charts all round the house. He had them at school too. It helps fix a home routine even if it is different to school.

Marg

 

[Mamaof5]

It's an idea but she has linguistic and comprehensive disabilities (2.5 years behind in development of language comprehension with her speech delays). I'll try it anyway with pictures instead of words. She was non-verbal back in January but the speech therapy has been helping quite a bit where she's now stringing two words together and signs too.

Thanks for the idea, I'll give it a whirl and see what comes of it.

 

[SRL]

Ask the speech therapist about the visual schedule. She may be able to help you out there.

 

[Marguerite]

About my earlier suggestion of a chart or schedule -

It's an idea but she has linguistic and comprehensive disabilities (2.5 years behind in development of language comprehension with her speech delays). I'll try it anyway with pictures instead of words.

That's why I suggested using Compics. Again, ask the speech therapist about them. Or Google them. They are also a way of linking the name of the task with an image of the task and the written word for the task (as well as the task itself, if you present it the right way). We found with difficult child 3, that he needed to learn communication with everything all on board - instead of braking it down into little bits, as you would expect, we had to give him the lot at once - the context, the sound of the word, the look of the word and the meaning itself as acted out. For example I would write out the word "stop" in red and make it look like a stop sign. Then I showed it to difficult child 3, read it to him and said "stop". Then we were walking along with this piece of paper, I showed him the paper and said, "Stop" and we stopped. I also had the word "go" in green and underneath was a stick figure of a walking man. So after we stopped, I would say, "go" and show him the word GO and we would then begin walking. We did this over and over like a game, and he learned the whole lot. It was one of his early words that he could say.

Until difficult child 3 learned to recognise the word in this way, he didn't use it in speech. But using tis method he could learn (and remember) and use a number of new words each day.

He was slow to learn his colours. But in one day while I was at work, his child care worker (at that time she only had him, no other kids) used my "write it down" method to teach him the colours of the rainbow. When I collected him that afternoon, difficult child 3 was able to show me and name, the different coloured pencils. He had his colours written down on paper and read them to me as well.

I'm not saying this is what you should do for your daughter - only that different kids learn in different ways and sometimes ways we least expect. At the time difficult child 3 was doing this, he was assessed and basically "failed" his first IQ test. His language delay meant he simply didn't have enough understanding (despite his progress) to function in the test at an age-appropriate level. However, it is called language DELAY for a reason. It's delayed, not halted. They can catch up.

Marg

 

[Mamaof5]

A bit of an update here - we've tried 5 times to have her assessed for the spectrum (the not otherwise specified part and cognitive skills) with the pathologist with absolutely no success. We're trying again at the daycare in a more relaxed setting (she hates the pathologist's office, even clung to the door frame of the room and refused to even step foot near it - refused to look the pathologist in the eye and did not want to work with her at all - shut down and withdrew completely).

However, at the daycare with the speech therapist and pathologist (both female as well) she's as "chatty" as can be, works well with them. She's come leaps and bounds with the speech therapy to the point where she's stringing words together much better and signs too. She spontaneously strung two signs together (want cookie) two weeks ago. It was amazing, she spoke with the signs as well (want cookie) and she's starting to do this a lot now. Responding to everything or just about.

There was twice she found a lighter since the "big incident" and brought that lighter straight to us! Only one attempt to light a birthday candle we had missed in our walk through the house for all thing that can be lit up. The two lighters she found were one outside on the grounds of the complex that must have been dropped and one in our van as we were parked at a mall just getting ready to leave (we don't smoke in our vehicle at all, it's also against the law here too - but we never have with the kids in the vehicle).

So she's doing much better, still struggling to get her to go to sleep at night - she can't unwind and ends up being up at all hours but we take shifts. She's doing a lot more speaking than pointing now and she seems to be in a neutral cycle of behavior patterns right now. I know this is temporary but it's a nice little break when it does happen. I've started doing brushing on her arms and legs with a soft bristle brush and I warm it up in warm water first which seems to help. She still obsessive with water, heat and sensory seeking but she's been learning to pick up the brush instead of flooding my bathroom or asking for a warm bath or to play at the kitchen sink (with supervision of course).

Thursday we'll see if we can nail the assessment down with the pathologist at daycare. Hopefully the familiar daycare settings will help ease her mind and anxieties about the pathologist. She really doesn't seem to like this lady at all - not the her fault though - I chalk it up to being someone she doesn't see regularly at all and hasn't gotten used to yet. She's very withdrawn with new people, almost terrified of them.

Will update on Thursday.