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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by SteveDavis58 on January 29, 2006, at 21:22:47
Hello. I have just signed up to the group. I have a 14 yr old daughter whom is on numerous meds which I will list at the end of my introduction. There doesn't seem to be any concrete answers anywhere for the issues our family is dealing with.
This started when my daughter was 18 months old she was diagnosed with a mixed gleoma of the left frontal lobe. She had 3 brain tumor surgries and underwent 9 months of chemotherapy.She has been cancer free for 9 years.{hooray!!} After many test she has been diagnosed as functioning on a level of a 10 yr old. At this time our main issues are behavioral problems at home. she can have episodes of screaming,crying feelings of not being loved,inadequaticies etc..... She has 2 grandmothers who see none of this!!! They think we overreact,are mean,or trying to put her away. Nothing could be farther from the truth. Anything said to her that she views as negative can trigger these episodes. We love our daughter{s} very much and want to do the best for them as possible. But,in all honesty we feel like we're butting our heads against a stump!! I have alot of catching up to do on this site, but just wanted to say hello and furnish some background as to why we are here. We welcome all comments and will reply in kind when our opinion is requested.Meds currently are as follows:
Depakote - 1,000 mg p/day
Seroquel - 800 mg p/day
ambilify - 45 mg per day
trileptal - 900 mg p/day
Posted by john berk on January 29, 2006, at 21:57:09
In reply to newbie, posted by SteveDavis58 on January 29, 2006, at 21:22:47
Hi, Welcome to the group,
God bless your daughter, that is awesome that she is cancer free 9 years, i just lost my 39 year old cousin to cancer, it is a trial beyond comprehension!! i can relate in a sense to what you are saying about grandparents not understanding your interactions with your daughter, my sister has a 7 year old who is very hyper, she may see a doctor for meds soon, and my father is continually berating my sister and how she handles the situationbut i have seen first hand how hard it is at times for a loving parent, who has to be there 24/7, to show complete tolerance, it is very tyring!!! i just want to welcome you, i hope you find the help you need here for your daughter, [i'm sure you will] take care...john
Posted by Phillipa on January 29, 2006, at 22:25:13
In reply to Re: newbie » SteveDavis58, posted by john berk on January 29, 2006, at 21:57:09
Wow you have been through a lot and of course so has your daughter. There is a wealth of knowledge on the boards here. You might also post this on health. Two boards are better than one. Welcome to our family. Fondly, Phillipa
Posted by Racer on January 29, 2006, at 23:00:46
In reply to newbie, posted by SteveDavis58 on January 29, 2006, at 21:22:47
Seriously -- family counseling is not about sick families, it's about families who love each other enough to put some effort into it. You sound like you qualify for that.
Psychotherapy in general would be a great way to help your daughter learn to accept constructive criticism, before this gets worse. Also, remember what she's likely going through in school -- children can be quite cruel. That's gonna have an effect on her at home, too.
And, cancer free, but what sort of organic deficits are involved? I'm guessing she's had a complete and extensive neurological workup? So that you know if, say, she's got a deficit in spatial reasoning, etc? How complete was it? Could any of these outbursts be related to physical damage to her brain? Doesn't matter in terms of behavior, but makes it a whole lot easier for you and your wife to tell her, "It's not your fault that you do this, it's because of the brain surgery -- and you still have to learn to control your behavior." (I hope that makes sense. My communication skills are out at the cleaners right now.)
The meds that your daughter are on are all said to be quite good, but I wonder that she's on what seems like a pretty heavy combination of anti-psychotics? (Not a class I know much about, beyond that they have a whole class of problems that might be hard to live with for a child.) Are all these all for the outbursts? Sounds to me as though she maybe would benefit from a second opinion from a psychiatrist who specializes in children. It's worth it, in the long run, to make sure you're not punishing her for something beyond her control, and that the drugs she's on are safe for a child. At 14, her brain is still developing, and I would worry that blocking some receptors and stimulating others might cause some changes to that development. Not saying she doesn't need these meds, just that a second opinion from a specialist seems reasonable.
I'm sorry for your trials. Best luck to you all.
Posted by greywolf on January 30, 2006, at 4:10:48
In reply to newbie, posted by SteveDavis58 on January 29, 2006, at 21:22:47
I'm glad to hear that your daughter has had such success with the brain tumor issues. My son had just a minor problem with a lesion when he was an infant, and even though the surgery took no more than a couple hours and no chemo was necessary, it was a terribly trying time. I can't imagine what you've been through.
To my layman's eyes, the amount of the dosages you list doesn't strike me as out of line even though she's maxed out on the Depakote. I know that some interactions increase elimination rates for certain drugs, and that might play into the dosages you're dealing with.
The situation you have sounds pretty involved, and I wouldn't have the ability to comment very intelligently on it--particularly as to a child. In my experience, this is second opinion territory if you're concerned that the cocktail she's on isn't doing the job.
Posted by fiftylager on January 30, 2006, at 7:37:42
In reply to newbie, posted by SteveDavis58 on January 29, 2006, at 21:22:47
Welcome! I am a newbie too. I just want to say I think your a great parent for getting your daughter the help she needs. My parents gave up on me and now I'm an adult with big problems. Your family has been through a lot.
I'm sure it is terrible to see your child go through this. I'm scared my children will take after me and can't imagine how painful it would be for me. Good for you for seeking help and support, I know dealing with these problems must be so difficult. I can't really comment on treatment because I'm not really knowledgeable about it. Although I wish I was. I wish you the best.
Crissi
This is the end of the thread.
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