My 7 yo dd has been on a flying state of who knows what for over a week now. I am exhausted. We deal with mental health professionals all the time. No behavioral plan has really helped her. No meds have done much. No listening program or special diet has helped. Nothing we have done has done much to improve her behavior.
Do these things REALLY help deeply disturbed children? Or are they just a way for professionals to keep trying & getting paid?
If I knew I nothing is really going to change her, I could relax & just try to make the best of her limitations. Is there ever a point where you just accept the limitations & quit trying to change them?
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I can't tell you it gets easier unless I define what it means to "get easier".
It gets easier to manage the symptoms after you have done it for long enough that you can go on auto-piolet most of the time.
It gets easier to deal with the doctors when you find one or 2 who really "click" and you are able to work well with them.
It gets easier when after a dozen med trials you find one that works, even just a bit.
It gets easier after you have had the time to grieve and modify the expectations you have for your child and you learn to embrace the good things that they can do.
It gets easier when you find some supportive friends who can encouraage you through the rough spots and really undertand you.
It gets easier (eventually) once you get an accurate diagnosis and you learn about what to expect.
((((((Toby))))))
Keep posting. It will help make it easier. Also you can email me any time if you'd just like to talk.
Kristen aka curlywhirly~ moderator
~~(*-*)~~
curlywhirly@msn.com
14yob, BPI, PTSD, LD
12yob, BP, GAD, LD, Gifted
Jerome, wonderful hubby
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HI,
Been there, done that. And someone who hasn't had 'those' moments with their kid can not begin to imagine what it is like. Okay what to the pros have her diagnosed as? What have you tried? I am looking into some neurobehavioral clinics that do detailed evaluation of 'difficult' kids. Let us know what you've been told and we can brainstorm ideas.
Peace, Nedra
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to have some Moms who won't sugar coat things. I am not as low as when I posted that, but I guess the bottom line is I wish the pros would just tell you flat out when there is nothing they can do to change things. I am not saying I want to GIVE UP on my dd, I just want to quit banging my head against the wall UNLESS there is a reasonable chance the wall will give.
You asked about diagnoses & what has been done: the child I'm concerned here about is my 4th -- she was born at 30 weeks to parents with serious mental illness. She had nasty pre-natal exposures to psychotropic meds, alcohol, tobacco, and even repeated electric shock therapy during her second trimester. I do not know what caused her early delivery.
She is now 7 years old and the apple of my eye despite her difficulties. We were able to adopt her at three months, she had been in NICU just a month, then in a great foster situation. She spent her first two years with asthma out of control & was quite delayed partly due to spending all her energy breathing. Her asthma has been controlled since just after she turned 2.
She is currently diagnosed with FAE, atypical Asperger's,lots of OCD & SI, PTSD, CAPD, probable schizophrenia, and numerous learning disabilities -- these diagnoses by a neuropsych who specializes in children adopted out of Romanian orphanages (although that is not her situation, both she & her bio sib present like post-institutionalized children). IQ tests around 85-90, but her learning is very spotty -- when working a program such as Earobics, she can do two of the skills easily, but the others only with great difficulty & much frustration -- it's as if she's hit a brick wall. Her local docs like to say PDDNOS, developing social disorder, traits of Asperger's, FAE, and ADHD. Those diagnoses only come if we push.
What have we tried? She has received in-home wrap around & mobile therapy for 3 years. She has been on clonidine -- worked great for 2 months then nothing, paxil -- made her bananas, now on risperdal (we see nothing), tegretol (we see nothing), zyprexa (helps her sleep), and zoloft (reduces her ocd). We have tried the Feingold diet. We have tried The Listening Program, are currently working on Sanomas. She receives OT mostly focused on SI once a week. We dropped her speech therapy once we felt her speech is OK. We are starting Dianne Craft's protocol. We have brushed & done joint compressions (nothing). We have done MRIs & EEGs (no evidence of seizure). We have had the 2 to a genetics doctor who finds them fascinating & is sure they have some syndrome as yet unidentified. We have used Brain Builder, are currently working through Audioblox & Earobics. I have switched reading programs several times, she is on her 3rd year ofphonics & so far it has not clicked. I am adding some sight vocabulary. We have used some picture schedules for daily routines.
Anyhow, thank you for this place. I am definitely interested in picking your brains. We can talk about my son, her bio sib, another time. He has similar history but presents very differently, has lived in RTF the past year with no sign of coming home soon.
It is the day-to-day things that wear me out. My dd unloads her dresser so often. Wears 4 layers of clothes if given the chance. Eats with her fingers. Is incredibly inappropriate with strangers. Is obsessed with death. And owns my heart.
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First, do you know the specific diagnoses of the bio-parents? I am fishing for Bipolar, Manic-depressive, Mood Dosirder NOS, Depression. Also of interest would be thyroid problems, alcoholism and substance abuse, and schizophrenia.
The fact that your daughter went bananas on an anti-depressant is a red flag for me for Bipolar Disorder. So are the things you describe with the nooses, etc. My older son was diagnosed with OCD before the correct diagnosis of Bipolar, but it turns out his obsessions (with death and dying) go away when more stable on BP meds.
I see you have tried a mood stabilizer (tegretol, also an anti-convulsant) and anti-psychotic meds (Zyprexa and Risperdal). Those would probably (possibly not, med response is unpredictable in BP) be helpful for Bipolar, unless there was an anti-depressant at the same time. Anti-depressant meds are infamous for cauing Bipolar to get worse, or to prevent the mood stabilizers from working.
Here are some links to information on Bipolar in kids. I know there is a lot of overlap in symptoms between BP and some of the other things you already have diagnosed. Since most professionals are *sill* not well informed about BP in kids, you may want to have yet another consult with a doc who specialized in BP in children. Let me know and I can help you find a specialist in your area.
thank you for your thoughts... you nailed the birth parents' diagnoses almost right on the head, though I'm pretty sure the one is adult RAD probably primarily.
I have done the bipolar reading on her brother, have the book, and am on some of the lists. It is definitely something I am watching for, but I don't quite think it fits yet. The OCD seems to be right, it is lots of autistic type obsessions with textures & routines & my sense on the nooses, etc, is that it is more sensory stim than anything. Actually, I made her a lycra cap which she now wears to bed & has moved on to other things.
I will keep in mind to keep watching for bipolar interventions & meds. The docs at this point think she is leaning more schizzy.
Thank you, I will check the websites that are new to me.
Toby -- mom to 5
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