| Dear Sparkle, first I want to assure you that you're not alone. Obviously you love your daughter dearly and want what's best for her including a stable mother who can cope appropriately and that is what brought you to this forum. I know from my own experience how stressful and emotionally draining a child's severe behaviors can be on a parent. I feel so distressed at times and yet I can't get a break...all I can do is cry. My daughter is 18 (but she functions mentally at about age 2 to 3) and she still throws tantrums. She is sometimes in a "mood" for days at a time. It's hard to keep her happy. She might get upset and yell, cuss, sit down and refuse to get up, hit, and even spit at me (or her teacher or whoever). These behaviors make me feel so desparate for help that I don't know what to do. She has a behavior plan and takes lamictal and carbatrol (tegretol). These are anti-seizure meds (she has seizures), but they are also commonly prescribed for bi-polar behaviors too. They really don't know if she's bi-polar. It's difficult to tell. Also, her expressive communication is extremely limited and she doesn't really speak in sentences. I can also definitely relate to the insomnia issue. My daughter has to be on sleeping medication or she'll get up at 1am or 3am and stay up all night which doesn't help mellow her behaviors the next day. Recently she has built a tolerance to her sleeping med and she's up again at night. Hopefully her doc will adjust or change that soon. It's not healthy for me or her to try to function sleep-deprived. I don't know why she wakes up and can't sleep. I want the docs to get to the root of that cause soon. I don't wan't her to have to take sleeping meds. I am pleased to say that when she's happy, she's delightful and loving & affectionate,and so sweet and fun. I just can't get enough of her. It's like a rollercoaster sometimes. What is your daughter's diagnosis? Why did docs prescribe risperdal and seroquel? How long has she been on these meds? You said they don't seem to be working for her? Did she crave food the same way before she started taking respirdol and seroquel? I took my daughter off those two drugs last year because she became so food-obsessed that eating was the only thing on her mind 24/7. I began to feel bad for her, how frustrating for her. However, I must say that if those two drugs would have made an improvement in her behaviors I would have kept her on them. Does your daughter go to school? Is there any repite available for you so you can take a break? What other resources can you apply for? Is your daughter a regional center client? Don't give up!!! I didn't and eventually help came along. I still have fears of not having enough help again, but I've learned not to give up. I wish you and your daughter all the best. Jeril ↑ |
Hi Jeril63
Thnk you for your reponse to my forum I really appreciate it. My daughter's dc said that is hard t place a name to her disabilities because she is plague with so many. I must say before i forget that she is obsessed with food now and now that you spoke I have t wonder if it not the seroquel. She was doing pretty okay until I pulled her off the Topomax because I beliee that is was causing her gums to grow. She has not seetled since I put her back on it about a month ago. She has been doing things that she stop doing for a long time. Just tonight she placed a rubberband in her noise and saiid she has something in her noise and then said that she was only kidding. I saw her kept blowing and then when I look she was having a nose bleed. I got out the rubberband and spoke to her very calmly and I told her it was a silly thing to do and ask her not to do it again. She is back to doing things that may harm herself.
She is due to go to the doc this month so I do not kn0ow what is the next step. Her do says that she has impluse behaviour and Psychotic behaviour.
I am from a Caribbean country and they are limited resources her for children with disabilities.
We have one respite care her and there are grown men with disabilities there and of course my daughter is very in touch with herself and I would not like any other problems. We really need a facility for boy and girls or do something about mixing 20 year old with 5 year old. Mind you I have not been back fs ↑ |
| Sparkle, yes I have to agree that when it comes to any respite care that you should feel fully confident that your daughter is safe and out of harms way. You are your daughter's best advocate. Keep your eyes open and follow your intuition if need be in order for your daughter to be in the best of care. When you see your daughter's doctor this month do inquire about all possible resources that might be available for her- and to you also as a parent. Keep yourself as informed as possible always. You never know- Often times new programs and/or resources arise without our knowledge. It never hurts to ask what might be available. Hopefully your doctor visit will be beneficial for your daughter. Best of luck. Hang in there. Jeril P.S. by the way, my daughter doesn't have a "concrete" diagnosis either. It's definitely a neurological disorder, and concidered CP(GESTATIONAL CP), but it has always been considered somewhat of idiopathic meaning "cause unknown, and not sure." Whatever it may be and why... I think it's most important to focus on behaviors and making our kids happy. Easier said than done a lot of the time, but we've got to keep trying anyway. Try to be strong. ↑ |
