M
Mamaof5
Guest
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.
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.
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.