Just need to know I'm not alone
Hi everyone. I'm new to this forum and I'm just looking to know for now that I'm not the only one going through all this. I feel so alone right now.
Let me tell you about my family and a little of what's been going on. My son Simon is 11 and was just released from his first hospitalization. He has BP and ADHA. He was depressed and wanting to die, with plans. He is very anxious and self injures a lot. This has gotten much worse over the summer. Everything seemed to come to a head when he started middle school. He couldn't handle the drastic change and he thinks all the kids are picking on him and the teachers are mostly just mean and unfair to him. I feel I didn't prepare him enough for this change. He is on Vyvanse 40mg, Wellbutrin 100?mg, and Risperdone 1mg. But the Wellbutrin is new and I'm starting to see some hypomanic signs, so I'm very concerned. We have doctors appointments tomorrow so I'm sure we'll get an adjustment. The anti-depressants really scare me because I know what they do to me. The up is GREAT but the ride down is the worst! The more I read the more I am feeling I don't want my kid on this stuff. I'd really like to see a mood stablizer added but I think my Dr is hesitant to do this. Lithium would be my first choice as I have good luck with it. I've had good luck with adding Lamictial to the Lithium but not too sure about Lamictical for an 11 yr old.
So I'm trying to care for Simon and his needs now. Meanwhile, my husband just had his first case of kidney stones and he has been trying to come off caffine so he's got migraines all the time. He gets these all the time to begin with. And I'm all over the place mood wise. It's like being on a roller coaster while blind folded. You know the ups and downs are comming you just don't know when or how intense the hills will be. I attribute much of this to my missing meds because of the inconsistany in our current schedule. I'm on Lithium 1200mg, Lamictial 200?mg, Klonipin 1-2mg, Temazapan 15mg, and Provigil ?mg. I can't remember all my mg's anymore as they've all been tweaked over time so I just keep a list in my wallet. My main support, other than my husband who just doesn't seem to get it, is my mother. Unfortunatly she is going through a major depression right now so she isn't much help. My father is depressed and OCD. He's getting better but is still very withdrawn. So I'm very much without a good safety net right now and this terifys me.
My youngest is 4 and we are very concerned he has BP also. He acts much like his brother but with more symptoms and more to the extreme in may ways. But what do you do with a 4 year old? I'm not ready to go down that road with him yet.
My Duncan is 5 and in kindergarden. He is some how "normal". He is so different from his brothers. I feel bad for him right now because I can't give him more attention.
Anyway thanks for listening.
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Simon- 10, bipolar and ADHD
Duncan- 5
Wesley- 4
Sara- mom, Bipolar and panic disorder
Colin, dad
Sara,
You are certainly not alone. I would also be very concerned about the Welbutrin, and the Vyvanse as well. Lamictal is approved in kids as young as 2 , I believe. Lamictal and lithium is a great combo for many folks.
As for your 4 year old, sometimes it's hard to tell if the behaviors are a reaction to the older sibling, or a sign of something else going on. There is a lot of stress in your household right now, what with your unstable son, sick dh, and your own issues. You and dh need to be sure to take care of yourselves. It will make a huge difference in being able to care for special needs kids.
re: caffeine withdrawal, I went through that several months ago. I cut it back gradually over the course of a month. I had one period of HA's, but it was much easier than stopping cold-turkey.
Here's a link to the Expert Treatment Guidelines and the AACP Guide. These are very helpful in helping you to understand what meds should be used and why. It sounds like you already know a lot of this, but sometimes it helps to carry a copy of the guidelines into the pdoc appt. They always seem to take you more seriously when you look like you know what you're talking about.
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Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 16, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 13 & H, 10
Married 17 years to DH, 49
If CABF has helped you, please help CABF. Donate today. http://www.bpkids.org/donate?campaign=forums2010
FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
Well we went to the doctor's today. I had been keeping a journal, my mind is like a sive!, and that way I was able to see exactly how he was acting. We both agreed on the Wellbutrin. There are just too many risks and after only, what 2 weeks, he's already showing signs of being manic. We decided to drop it and he was only on a low dose so she felt he would be ok to just stop it. The Vyvanse I do have my concerns about but he has been doing very well on it for quite some time now. We did try and stop it at the end of last school year because Simon wanted to. That just didn't work. Without it he is extremely impulsive and hyper, always falling about and making strange noises, ect. We discussed Lamictial, I liked it because it is a mood stabilizer but also has antidepressant properties, and it works well on me:) I was worried though because what I had read talked about it only being approved for children 16 and older. But she explained that it has been used for epilepsy for a long time on young chuldren so there were studies to show it was safe. She even got out this big old doctor's reference guide and double checked herself! She was able to write his script for the dose based on his weight, not age, a plus cause he's just small. So the pharmacy of course doesn't have that doseage so, it will be Monday before he starts it. I'm very hopeful.
Now if I can just remember to take my meds things are sure to improve.
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Simon- 10, bipolar and ADHD
Duncan- 5
Wesley- 4
Sara- mom, Bipolar and panic disorder
Colin, dad
Sara,
Wow, what a productive pdoc appt! Hopefully the pdoc is starting the Lamictal at a low dose and titrating up slowly. If you're on it, I'm sure you've been through that. Just be patient; it usually takes several weeks to start seeing the benefits of Lamictal, but if it works, it's worth the wait.
I hope stopping the Welbutrin takes care of the manic sx. It may not be enough just to stop it though. She may need something to bring her down until the Lamictal kicks in. AD-induced mania tends to hang around for a few weeks, unfortunately. We have BTDT, and it's not fun.
Do you use a weekly med box for your meds? I would never be able to keep up with mine if I didn't. The boys have med boxes, too. That way I can always tell if they miss a dose. Plus, who wants all those med bottles sitting on the counter :-)
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Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 16, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 13 & H, 10
Married 17 years to DH, 49
If CABF has helped you, please help CABF. Donate today. http://www.bpkids.org/donate?campaign=forums2010
FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
Hi Sara
I just read your posts and wanted to let you know that you are definitely not alone in what you are dealing with. My son is 14 years old and we had suspected a mood disorder since his toddler years but every doctor we went to including an inpatient hospitlization all dismissed the assumed disorder and thought it was ADHD. As year progressed his issues worsened including the same things your son has been showing anger, aggression, severe depression, agitation, etc etc and he has had multiple hospitlizations including for a suicide attempt. He has been on various medications and has only recently been weened off many of them and the doctor is starting a new regimen including lamictal. The point I am trying to make is that as you probably already know there is no magic recipe of medications that will act for everyone the same way. This is where science and luck come into play. I wouldnt get so hung up at this point about the pros and cons of any particular medication if you are going to a pediatric psychiatrist. The assumption is that you trust him/her so let him/her use their expertise. The one thing you can do of course is be your son's advocate and do not be afraid to ask your doctor as many questions as you feel comfortable. If he or she seems to get agitated at your questions then perhaps you need to rethink if this person is the one you want to establish a longtime working relationship with. One thing sounds pretty convincing is that your son may benefit immensly from a mood stabilizer but let your physician make the suggestion as to which one rather than an emotional decision by you. Unfortunately all medications have side effects we dont want to see but discounting one medication without knowing if it will work could cost you and your son valuable time with regard to effective results. The other point I would like to make is that you really need to make sure you are ALWAYS taking care of yourself. If your son is like mine he probably responds according to how you are doing. My wife is bipolar and my son is greatly affected by my wifes disposition. If she is very agitated or depressed the effects are exponentially worse on my son. SO I would really encourage you to keep yourself healthy for everyone. Hang in there, be patient and know that there are no absolutes with fighting this illness but with preserverance and skilled health professionals your son will come through this as will your family.
Steve
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RunningOnEmpty
Hi everyone, thanks for all your input. It is really helpful.
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Simon- 10, bipolar and ADHD
Duncan- 5
Wesley- 4
Sara- mom, Bipolar and panic disorder
Colin, dad
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living with not suffering from
I completely understand what you are going through. I also suffer from bipolar and panic attacsand have adhd. am on so many meds some times i wonder about what they are doing to my body. My 13 year old son is bipolar and has been in and out of hospitals every 6 months for over three years. med changes, new drs, new therapy, it really is a roller coaster. there is a right combination, unfortunately it seems like trial and error to get to it. From experience i can relate to the anti depressant issue. every anti depressant we ever tried set my son off into hypomania and extream rages. but off them he woul get so sad sometimes and try to kill himself. After years of fighting I finnaly got a psych to put him on lithium, which wored for me, and we are seeing good results. All the other dr said it was an old school med, no one uses it anymore, but some of these new designer mood stabalizers have so many side effects and just havent been tested on kids....its like a crap shoot. Good luck with your journey, hope your husband feels better soon, and god blesss.