Ok well gotta love winter in the Midwest.. Or is it just Indiana weather? Last week.. we were buried under a few inches of ice then several inches of snow and there was no school FOR 4 DAYS!!!! I managed to hang in for 2 then had to have mom step in and take him the other 2.. Since I would also have him for the weekend.. Oh wait, I'm a mother, I should be happy to spend 24/7 with my child right?? Shhh, don't tell anyone. I'm already in the running for mother of the year, I don't need this to tarnish my rep!!! LOL
I finally got the doc to put him on a new med and we didn't go the Prozac route, we put him back on Geodone. He has been on this before, but she started him on the lowest possible dose.. So far.. it seems to work well with the trileptol but I can definitely see it being increased as well.. So hopefully with the med change, we can get back on track, get school back under control and keep the weight down too. We've backed off group therapy for awhile too so I hope he gets back into that. He doesn't like this one as much as the one at St V's but I hope he gets there one of these days. Group therapy seemed to really work for him.
Not much else to report tonight but promise to be more current with the updates and resources.
Thursday, February 10, 2011
Saturday, January 29, 2011
Possible relapse or just a bad week??
Uggghhhh! I know it's all part of the territory and this is nothing that any of us are none to familiar with when raising a bipolar child. Good weeks, bad weeks, relapses, stability, calm. And as always, the medicine dilemma.. So here is how things have been.. About 2 weeks ago we weened off the invega due to the weight gain. The pdoc wanted to put him on Zoloft or Prozac in it's place ad I was leery of it. First week with no invega was great, didn't adjust other meds or add in any new ones.. Really? Could this work? Trileptol is rumored to work better when paired but I thought maybe we won't have to, or at the very least, lets up the dosage since he's still on a really low one before we add in a new med. Week 1 passes and week 2 starts, not so hot this week. Soo much trouble at school, plus a little more at home then we've seen in a few months. Craptastic!! Luckily no suspensions from school or trips back to the hospital yet though because I still see some control in him that he didn't have before. He's still able to pull it together and get it under control.. now if we can just work on all that from the beginning. I still see the progress from the last hospital visit and treatment and there's still days when he wants to be in full control ( I don't allow many but we do try on weekends sometimes). He's also very on board with taking control of it, not letting it control him. Show it who's boss, & kick it's ass, we always say!! I'm still so very proud of him and know that he won't let this beat him or that he won't use it as an excuse as he gets older.
He's growing up so fast and soon we will have to deal with puberty and him being a teenager. He's got such a heightened curiosity about things that I am not ready for him to be curious about yet and I'm not sure Mom is the best person to help him through boy puberty stuff, but I'll do the best I can and hope I just don't scar him for life. He knows he can ask me questions about anything he knows not to hide things from me so hopefully as he gets older he will remember that.
He's got a lot of anger for such a young kid and I hope that someday as he grows up, he will either be able to move past it or work through it. Unfortunately, this is a fight I have to watch from the sidelines and can only cheer him on but cannot be his coach. I hate that he has to deal with it as a kid and I know from experience, it's not an easy fight.. But I know he'll come out on top someday and will prevail in it. He may not like how it happens or what he needs to to do get there but I know he will do whats right for him in the end.
He's growing up so fast and soon we will have to deal with puberty and him being a teenager. He's got such a heightened curiosity about things that I am not ready for him to be curious about yet and I'm not sure Mom is the best person to help him through boy puberty stuff, but I'll do the best I can and hope I just don't scar him for life. He knows he can ask me questions about anything he knows not to hide things from me so hopefully as he gets older he will remember that.
He's got a lot of anger for such a young kid and I hope that someday as he grows up, he will either be able to move past it or work through it. Unfortunately, this is a fight I have to watch from the sidelines and can only cheer him on but cannot be his coach. I hate that he has to deal with it as a kid and I know from experience, it's not an easy fight.. But I know he'll come out on top someday and will prevail in it. He may not like how it happens or what he needs to to do get there but I know he will do whats right for him in the end.
Wednesday, January 19, 2011
When did that happen and other random stuff
Yeah, Yeah I know.. Slacker comes to mind. I was doing really well with keeping up with the blog, then the holidays came AND WENT.. and now, well no excuse. So, I promise to keep this updated.. But I can't always promise anything exciting so hopefully you will still stick with me to find out.
So first and foremost.. the reason for this blog.. Jake!
So far we are off to a good start for the year and sometime while I wasn't looking apparently, my little boy grew up! Oh my! In less than 2 years, he'll be a teenager but after dealing with the behaviors and actions he's exhibited over the years, the teen years should be a breeze right?? No, Seriously, I want someone to answer that for me!! I have spent so many years with the rose colored glasses and kid gloves on, I guess I missed a few things.. and it may be time to take them off.. (but still keeping them both within reach of course). No I am not ready to ship him off yet and he's still a kid but he's grown up so much in the past 6 months. So many things I protected him from in the past, I don't think I need to anymore. I have always been the reluctant mom of the bipolar kid, so I went to birthday parties with him, kept him close in certain situations, worried about things that most mom's never have to worry about. He has shown me lately that I may not need to worry as much as I used to. I need to loosen the rope a bit and see what he does with it. He stays home by himself in the afternoons after school and is really enjoying the responsibility. He has a school field trip coming up in Feb and at first instinct, I contacted his teacher to talk to him about it, telling him I would go so that J could attend. The teacher said I could go but I wouldn't be with Jake during the day so it wasn't really necessary and of course I thought that if I did go and couldn't be with him, it would upset him. We talked about it and he already knew that if I went he couldn't be with me and was ok with it. Um?? Really!! Ok.. He still wants me to go though.. but will be ok with it either way if I do or don't and I won't be nervous nelly at work all day if I don't, waiting on the phone to ring.
(ok well maybe will a little bit, but old habits are hard to break right??)He's not showing as much of the immature tendencies as he used to either. Yeah!!! I took him off one of his meds last week due to some weight gain issues and so far so good without it. But still watching for any major changes in mood, behavior and whatever else.. He's doing well with the new doctors at Aspire but not so keen on the group therapy yet but I keep trying to push it and get him to go. He did soooo well at the group therapy sessions at St.V's while he was in that program and although I am glad he is done with it, I know there are days I really wish he still had it. He's talking to me more about his feelings and problems and this is huge for him to open up like that. I am soo proud of him and hope that he continues on this path towards success.
This weekend, I need to do a little reorganization on all other things bipolar in the house, I need to update some binders and start some new ones. The big red binder now has company. There's the Med Hx binder, the resource binder and the everything else binder. Well ok there is a Med Hx binder but the last 2 are conceptual at this point with full intent of being created soon. I have the info, just haven't had the time to organize and put them all together. So much information, so many resources. Once I get a better handle on everything, I will also get back to sharing them in the future blogs.
For now, however I can share a few pieces that every parent of a bipolar child should have..
For your Med Hx binder-
http://www.nami.org/namiland09/BASICSrecordkeepingsystem.pdf
Another good one to have on hand, especially if you are first starting out is the treatment guidelines:
http://www.bpkids.org/sites/default/files/treatment_guidelines.pdf
and the medication guide:
http://www.aacap.org/galleries/default-file/aacap_bipolar_medication_guide.pdf
Good Luck out there, and know that you are not alone. Reach out to local organizations for resources (ASK, in IN, or CABF and NAMI for national resources which will lead you to local resources in your area).
www.aboutspecialkids.org
www.bpkids.org
www.nami.org
Join a support group, become a parent volunteer with one of these organizations, do whatever you need to do for yourself to be the best parent to your bipolar child. Be educated, be informed and BE AWESOME!
So first and foremost.. the reason for this blog.. Jake!
So far we are off to a good start for the year and sometime while I wasn't looking apparently, my little boy grew up! Oh my! In less than 2 years, he'll be a teenager but after dealing with the behaviors and actions he's exhibited over the years, the teen years should be a breeze right?? No, Seriously, I want someone to answer that for me!! I have spent so many years with the rose colored glasses and kid gloves on, I guess I missed a few things.. and it may be time to take them off.. (but still keeping them both within reach of course). No I am not ready to ship him off yet and he's still a kid but he's grown up so much in the past 6 months. So many things I protected him from in the past, I don't think I need to anymore. I have always been the reluctant mom of the bipolar kid, so I went to birthday parties with him, kept him close in certain situations, worried about things that most mom's never have to worry about. He has shown me lately that I may not need to worry as much as I used to. I need to loosen the rope a bit and see what he does with it. He stays home by himself in the afternoons after school and is really enjoying the responsibility. He has a school field trip coming up in Feb and at first instinct, I contacted his teacher to talk to him about it, telling him I would go so that J could attend. The teacher said I could go but I wouldn't be with Jake during the day so it wasn't really necessary and of course I thought that if I did go and couldn't be with him, it would upset him. We talked about it and he already knew that if I went he couldn't be with me and was ok with it. Um?? Really!! Ok.. He still wants me to go though.. but will be ok with it either way if I do or don't and I won't be nervous nelly at work all day if I don't, waiting on the phone to ring.
(ok well maybe will a little bit, but old habits are hard to break right??)He's not showing as much of the immature tendencies as he used to either. Yeah!!! I took him off one of his meds last week due to some weight gain issues and so far so good without it. But still watching for any major changes in mood, behavior and whatever else.. He's doing well with the new doctors at Aspire but not so keen on the group therapy yet but I keep trying to push it and get him to go. He did soooo well at the group therapy sessions at St.V's while he was in that program and although I am glad he is done with it, I know there are days I really wish he still had it. He's talking to me more about his feelings and problems and this is huge for him to open up like that. I am soo proud of him and hope that he continues on this path towards success.
This weekend, I need to do a little reorganization on all other things bipolar in the house, I need to update some binders and start some new ones. The big red binder now has company. There's the Med Hx binder, the resource binder and the everything else binder. Well ok there is a Med Hx binder but the last 2 are conceptual at this point with full intent of being created soon. I have the info, just haven't had the time to organize and put them all together. So much information, so many resources. Once I get a better handle on everything, I will also get back to sharing them in the future blogs.
For now, however I can share a few pieces that every parent of a bipolar child should have..
For your Med Hx binder-
http://www.nami.org/namiland09/BASICSrecordkeepingsystem.pdf
Another good one to have on hand, especially if you are first starting out is the treatment guidelines:
http://www.bpkids.org/sites/default/files/treatment_guidelines.pdf
and the medication guide:
http://www.aacap.org/galleries/default-file/aacap_bipolar_medication_guide.pdf
Good Luck out there, and know that you are not alone. Reach out to local organizations for resources (ASK, in IN, or CABF and NAMI for national resources which will lead you to local resources in your area).
www.aboutspecialkids.org
www.bpkids.org
www.nami.org
Join a support group, become a parent volunteer with one of these organizations, do whatever you need to do for yourself to be the best parent to your bipolar child. Be educated, be informed and BE AWESOME!
Wednesday, January 5, 2011
New Year, New Beginnings
OK so wow, it's been awhile since I blogged last.. Guess, I better catch everyone up. We got through the holidays with flying colors and surprising success. (even tho I hate that term, "made it through" because that just sounds so lame and awful!!)
Thanksgiving was quiet as we opted for a small party of 2 meal this year with no extended family. It was stress free and quiet. Christmas, well wasn't as stress free and quiet but no major issues to report there.. Spent A LOT of time with family, running around, being away from home, blah blah blah.. BUT he did great.. Had 1 or 2 issues that could have escalated into his old behaviors but they didn't. I think he did better with the holidays then I did.. but as a mother, it was easy to "keep up appearances."
( but that's a log for another day)
We are back to school now after 2 weeks off and 2 days in, we have had 1 good day & 1 well- not so good. Around the time of my last blog, we had an issue with after school care and since the end of November, he has been staying home by himself after school. He's been doing great and has taken really well to the responsibility.So proud of him!!
So with good things to report so far, I will keep this short. Still not physical violence, no damaged property and the outbursts are small and easily contained these days. Still battling with some med issues tho health wise and hoping to get that under control soon. The med's are doing great right now for the behaviors but causing some issues with weight gain & fatigue. Good Luck to you all out there in the bipolar world & here is to a Happy, Healthy & Successful New Year!!
Thanksgiving was quiet as we opted for a small party of 2 meal this year with no extended family. It was stress free and quiet. Christmas, well wasn't as stress free and quiet but no major issues to report there.. Spent A LOT of time with family, running around, being away from home, blah blah blah.. BUT he did great.. Had 1 or 2 issues that could have escalated into his old behaviors but they didn't. I think he did better with the holidays then I did.. but as a mother, it was easy to "keep up appearances."
( but that's a log for another day)
We are back to school now after 2 weeks off and 2 days in, we have had 1 good day & 1 well- not so good. Around the time of my last blog, we had an issue with after school care and since the end of November, he has been staying home by himself after school. He's been doing great and has taken really well to the responsibility.So proud of him!!
So with good things to report so far, I will keep this short. Still not physical violence, no damaged property and the outbursts are small and easily contained these days. Still battling with some med issues tho health wise and hoping to get that under control soon. The med's are doing great right now for the behaviors but causing some issues with weight gain & fatigue. Good Luck to you all out there in the bipolar world & here is to a Happy, Healthy & Successful New Year!!
Tuesday, November 16, 2010
Resource Day
Wanted to do some sharing today of some really helpful resources I use or that I have come across. Today's resources are all available online.
The biggest one I want to share is http://www.bpkids.org/ for CABF- Child & Adolescent Bipolar Foundation. They are a wonderful website full of resources, educational materials, support groups, chat rooms and a family response team. I am a chat room moderator and a member of the FRT. They are also involved in the Pepsi Refresh Project currently in the running for a $250 grant. There are over 5 million U.S. youth who live with depression or bipolar disorder. Unfortunately, a very small percentage receive treatment. CABF will use the grant from Pepsi to raise public awareness and help more youth who suffer from depression or bipolar disorder. Please visit the site and remember to vote. We have 2 weeks left and are already up to 5th place. There are 3 ways to vote every day.
Another great site for behavior charts which is very effective and helpful for these kids is http://handipoints.com/printable-chart/. You can print off charts for the kids to earn stickers or behavior points, etc. They also have charts for Chore's, Studying, Fitness, Hygiene,Health to help motivate them.
Here is a website with a Crisis Contract that you can complete online or print out and complete http://mindyourmind.ca/toolbox/self-management/coping-kit.
This is good for the child to have something in writing so they know consequences for behaviors and also coping skills to avoid them.
This is a local (Indiana) resource but it could be useful if you want to check it out. http://www.aboutspecialkids.org/Default.aspx. They are a good place for resources and they offer training courses.
WrightsLaw is a wonderful resource and from the website you can narrow it to your state. http://www.yellowpagesforkids.com/help/ptis.htm On this site you will be able to find Directory of Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC). This is a good resource for education and advocacy.
Another one affiliated with WrightsLaw and advocacy is http://www.wrightslaw.com/info/advo.index.htm. This one lays out all of the things a parent needs to know about being an advocate for their child.
Another one for steps to become a parent advocate for your child is http://specialed.about.com/od/iep/a/advocat.htm.
The Complete IEP Guide: How to Advocate for Your Special Ed Child can be found at http://www.thefreelibrary.com/The+Complete+IEP+Guide%3a+How+to+Advocate+for+Your+Special+Ed+Child.-a059644182
I don't know how many Facebookers we have out there.. but on Facebook some of my favorite pages for bipolar kids are: CABF,Empowering Parents, Parents of Bipolar Children and Comorbid diseases, life with a bipolar child, Bipolar Awareness- Stop the Stigma, NAMI (National Alliance on Mental Illness). Also I did find one for the kids to join as well.. Children dealing with Bipolar with the family unit. This page was created to help guide and support children dealing with bipolar within the family to give the kids somewhere to rant and rave about dealing with Bipolar.
But since the kid is home sick today and now asking for Mommy, it's time to sign off.. Hopefully, this list will get you started and I will add more later from books or other resources. If there is anything you would like more info or anything you need further research one just let me know!
Good Luck & stay tuned.
I had hoped the links would appear so that you could click on them but for some reason they didn't. So if you have trouble accessing them let me know and I will get the information to you another way.
The biggest one I want to share is http://www.bpkids.org/ for CABF- Child & Adolescent Bipolar Foundation. They are a wonderful website full of resources, educational materials, support groups, chat rooms and a family response team. I am a chat room moderator and a member of the FRT. They are also involved in the Pepsi Refresh Project currently in the running for a $250 grant. There are over 5 million U.S. youth who live with depression or bipolar disorder. Unfortunately, a very small percentage receive treatment. CABF will use the grant from Pepsi to raise public awareness and help more youth who suffer from depression or bipolar disorder. Please visit the site and remember to vote. We have 2 weeks left and are already up to 5th place. There are 3 ways to vote every day.
Another great site for behavior charts which is very effective and helpful for these kids is http://handipoints.com/printable-chart/. You can print off charts for the kids to earn stickers or behavior points, etc. They also have charts for Chore's, Studying, Fitness, Hygiene,Health to help motivate them.
Here is a website with a Crisis Contract that you can complete online or print out and complete http://mindyourmind.ca/toolbox/self-management/coping-kit.
This is good for the child to have something in writing so they know consequences for behaviors and also coping skills to avoid them.
This is a local (Indiana) resource but it could be useful if you want to check it out. http://www.aboutspecialkids.org/Default.aspx. They are a good place for resources and they offer training courses.
WrightsLaw is a wonderful resource and from the website you can narrow it to your state. http://www.yellowpagesforkids.com/help/ptis.htm On this site you will be able to find Directory of Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC). This is a good resource for education and advocacy.
Another one affiliated with WrightsLaw and advocacy is http://www.wrightslaw.com/info/advo.index.htm. This one lays out all of the things a parent needs to know about being an advocate for their child.
Another one for steps to become a parent advocate for your child is http://specialed.about.com/od/iep/a/advocat.htm.
The Complete IEP Guide: How to Advocate for Your Special Ed Child can be found at http://www.thefreelibrary.com/The+Complete+IEP+Guide%3a+How+to+Advocate+for+Your+Special+Ed+Child.-a059644182
I don't know how many Facebookers we have out there.. but on Facebook some of my favorite pages for bipolar kids are: CABF,Empowering Parents, Parents of Bipolar Children and Comorbid diseases, life with a bipolar child, Bipolar Awareness- Stop the Stigma, NAMI (National Alliance on Mental Illness). Also I did find one for the kids to join as well.. Children dealing with Bipolar with the family unit. This page was created to help guide and support children dealing with bipolar within the family to give the kids somewhere to rant and rave about dealing with Bipolar.
But since the kid is home sick today and now asking for Mommy, it's time to sign off.. Hopefully, this list will get you started and I will add more later from books or other resources. If there is anything you would like more info or anything you need further research one just let me know!
Good Luck & stay tuned.
I had hoped the links would appear so that you could click on them but for some reason they didn't. So if you have trouble accessing them let me know and I will get the information to you another way.
Wednesday, November 10, 2010
Graduation Day & Bx Detox
Well we did it!!! OK so HE did it!! After 5 days in patient and 4 weeks with partial inpatient to intensive outpatient therapy and he graduated today.. I am soo proud of him!!! Yes I cried during his little ceremony. He picked out a prize and everyone went around the circle, held the prize and said something nice/positive about Jake. He is so happy too, it's so nice to actually hear him tell me that and I can see it in his face. I am hoping he will be able to maintain and keep up on all the things he's learned without the help of group therapy 3 days a week. Being around people who understand him, who know what he's been through. I know that this whole thing is far from over and this is just a "band-aide" but I reallt hope this one sticks for swhile. This is our seond trip to the hospital in 3 years and we are only a few years away from those "teen" years. We are not afraid of the hospital anymore and know it's there for us whenever we need it. We are meeting with 2 differnt therapists over the next few weeks to see which one is a better fit for him now that he is going to move on to 1 on 1 therapy. I am hopeful we can find a support group for him since he did sooooo well in the group dynamic. He's never been a big fan of the 1 on 1. Even if this one meets once a month or so and is for the whole family, that would work too.
As I was driving to pick him up from his last group session today from St Vincent Stress Center another one of my brilliant save the world ideas popped into my head. Too bad that this is not treated a little more like they treat alcoholism. You go thru the program and everything, go thru detox-- which he did.. a major behvior detox!! So my thinking to this was.. he needs a sponsor. Someone he can call when he's having a bad day, or feels like he wants to break something.. Not only that but he should get a chip for every "behavior free" day..(He would have his 30 day chip currently!!!) He made some good friends in the program and built a trust and a relationship with them.. and won't ever get to see them again. He barely has any friends as it is.. and especially none who really "get" him.. I know it's the hospital policy but it still kinda stinks..
So now begins the real test for him. I have faith in him and know he's going to try really hard and I will continue to do everything I can to help him, get myself educated more so I can arm him with everything possible. I am looking into advocacy classes, and I have put in an application to volunteer with CABF and I am waiting on a call to see if I can be on their Family Response Team. I have been pretty active on one of the CABF support groups recently and it's a great bunch of people. OH and I did find a facebook page for bipolar kids so I am hoping he will get involved in that too!
As I was driving to pick him up from his last group session today from St Vincent Stress Center another one of my brilliant save the world ideas popped into my head. Too bad that this is not treated a little more like they treat alcoholism. You go thru the program and everything, go thru detox-- which he did.. a major behvior detox!! So my thinking to this was.. he needs a sponsor. Someone he can call when he's having a bad day, or feels like he wants to break something.. Not only that but he should get a chip for every "behavior free" day..(He would have his 30 day chip currently!!!) He made some good friends in the program and built a trust and a relationship with them.. and won't ever get to see them again. He barely has any friends as it is.. and especially none who really "get" him.. I know it's the hospital policy but it still kinda stinks..
So now begins the real test for him. I have faith in him and know he's going to try really hard and I will continue to do everything I can to help him, get myself educated more so I can arm him with everything possible. I am looking into advocacy classes, and I have put in an application to volunteer with CABF and I am waiting on a call to see if I can be on their Family Response Team. I have been pretty active on one of the CABF support groups recently and it's a great bunch of people. OH and I did find a facebook page for bipolar kids so I am hoping he will get involved in that too!
Wednesday, November 3, 2010
One week til Graduation & The Pepsi Refresh Project
October is over and behind us. November is in full swing. We are one week away from graduating from the program at St Vincent's which we have been in since 9/30/10. To date, we have still not had any major blow ups, destroyed property or massive arguments. So Yippeee there!!! He will start one on one therapy about 2 weeks after he graduates so we will see how that goes. I really liked the group dynamic and I think he did to. He was always quick to participate and always wanted to offer up an answer or a suggestion. Plus we really got a lot out of the family therapy sessions as well. I am trying to find a group for him to be a part of after he graduates, even if they only meet once or twice a month. If I can't find one, maybe I'll figure out how to start one.. Which leads me to today's topics... Advocating and Educating. As parents of Bipolar/Mood Disorder kids, we struggle a lot with these issues between school, doctors, friends, family and just about any where else.
It has recently become clear to me on so many levels that both education and advocacy for this is very poor. Schools are not as well equipped as we like them to be, medical facilities for some reason are not all on the same page when it comes to it, and general public is pretty much just clueless.
If a child requires a long term care or a permanent residential type treatment, many families have to ship kids out of state, giving up pretty much any time of seeing their children unless they can afford weekend trips and a secondary place to stay while visiting. Which most of us cannot. Money is a huge factor as well, we can;t afford the insane costs of the doctor visits, which most of them need at least 2-4 times a month and lets not even forget the costs of the meds. Most kids are on a cocktail which can consist of 2-3 meds at a time, each one costing a few hundred dollars. Most insurance plans are not great with mental health. There are not many providers in this area and some parents will drive 2-3 hours to a doctor. This can take a toll on several things. Parent's jobs, relationships with a spouse or other children, and even friendships.
It is still a dream of mine to figure out a way to bring as much of this as close to home as I can. These kids need an environment they are comfortable in with teachers,care givers who are educated. We need to not have to drive several hours or ship our kids out of state. We need to not have to file bankruptcy in order to make sure our kids have meds and that the medical bills are not going to collections. This may not be a life threatening illness or disease but it is still very important. We have places like the Ronald McDonald House and Riley Hospital for those terminal patients, they offer parents places to stay while their kids are in treatment. Bipolar may not be terminal but it's pretty permanent or at least long term. This is something these kids will have to go through for most of or the rest of their lives. This isn't like a surgery where we take them in, have the procedure done and 4-6 weeks later, we are all better and going on with our lives. There is also very little published research on Pediatric and Adolescent Bipolar Disorder and what is out there is not very concrete. There are doctors out there who feel that you can diagnose this as early as 3 years old while others feel that it absolutely cannot be diagnosed until at least age 13. It's not as cut and dry as Cancer or other terminal or life threatening illnesses. With an illness, pretty much any doctor can look at you, run some tests, say yep you do or no you don't have it, then offer pretty concrete treatment options that will be the same where ever you decide to go for treatment. Yes OK, there are places out there with more extensive options or those places that deal with the clinical trials. I am not saying that Bipolar and Cancer should be looked at the same way or that having one is better or worse than having the other..So don't go getting all up in an uproar. My point is, if you have a broken bone, it gets fixed, if you rupture your appendix, they take it out, if you are diagnosed with Cancer, they put you on a treatment course. If that course doesn't work, they move on to another one. If you feel ill or are showing signs or symptons, they run tests, take Xrays, blood tests, etc. With Bipolar, mood disorders, the testing is primarily a bubble sheet questionairre where you answer questionos based on behaviors, environments, etc. These tests have no concrete intrepretation and depending on the day you fill it out, the outcome of the results could also vary. There is no X ray or blood test that will confirm a person has Bipolar disorder. Meds are also the primary treatment for this and with children, there are very little FDA approved prescription drugs that are approved for children and also meds affect kids differntly so a drug that works wonders on one kid may not work at all on another kid. There is a lot of arguments out there for "natural" or herbal treatments, or holistic approaches. There is not much research out there on this from a reiable source but more and more parents are looking into these to get away from the meds. The meds may work on the behaviors/moods but we end up messing with kidneys, thyroids, massive weight gain or loss or other long term health issues. So it's a vicious cycle and a lot of parents are at a loss on how to properly treat their children for something they may have to live with for the rest of their life.
OK so, as a part of being involved in a couple different parent or support groups, I have learned recently that CABF is competing for $250,000 in grant funding in the Pepsi Refresh Contest. Their main goal right now is to work with the blogger community to help secure funding for bipolar kids through the Pepsi Refresh Contest. So basically each time a blog like mine gets read and voted on, it helps CABF get closer to their goal of winning this grant. Having a grant like that could really help these kids out as well as helping the organization get the word out about advocating and education. I want Jake to be able to feel good about himself and know that what he has is something he can control, not something that can control him. I also want him armed with as much knowledge as he can have. He's only 11 now but soon will be a teenager, then a young adult where I won't always be there to advocate for him. He won't always be in a setting or situation where he will have an aide or where his day is goverened by an IEP.
Here is the actual release from CABF about their entry.
HELP CABF WIN $250,000 From Pepsi
CABF is in the running for a $250,000 grant from the Pepsi Refresh Project this month.
Winning this grant would transform CABF's ability to provide vital information and support services to children and families living with bipolar disorder and depression.
We can't win without you-- and you can help with just one minute every day. Winners are decided by total votes cast by Internet and text message votes throughout the month of November.
Sign up for a daily email voting reminder at http://www.bpkids.org/pepsi
and if CABF wins, a chance to win 1 of 3 iPads.
Vote today, ALL THREE WAYS, and every day in November:
Vote Online: Go to http://www.refresheverything.com/CABFhelpsmorekids. This will take you to the CABF Pepsi voting page. Click "Vote for this Idea". Register once and then you are all set.
Vote on Facebook: http://tiny.cc/cabfhelpsmorekids. The first time you vote via Facebook, you'll be asked for permission to access your information. Click "Allow". This will take you to the Pepsi Refresh Vote & Share application. You will see CABF's project below the search bar. Click "Vote for this Idea". (Be sure to click "share this idea" to encourage your friends to vote for us on Facebook. Do this every time you vote!) If you do not see our project, "type CABF" into the search bar.
Text your Vote: Text 104174 to PEPSI (73774) (Normal text rates apply).
What else can you do to get more votes for CABF?
•Bookmark our voting pages: http://www.refresheverything.com/CABFhelpsmorekids &http://tiny.cc/cabfhelpsmorekids. We need you to vote every day in the month of November. Anyone age 13 or older can vote. (Feel free to vote for other projects as well -- just not for any other projects which are also requesting a $250,000 grant).
•Tell your friends on Facebook by clicking this image: on the right hand column of the CABF voting page.
•FORWARD THIS EMAIL TO ALL YOUR FRIENDS, along with YOUR PERSONAL MESSAGE asking them to vote for CABF every day. Remember to ask your kids and their friends to vote.
•Print out flyer's and cards which you can give to friends. Hand them out at meetings, sporting events, etc.
Don't think you'll remember every day? No problem! Sign up for daily email reminders for a chance to WIN AN IPAD! If CABF wins the challenge, everyone who registered for a daily email reminder will have a chance to win one of three iPads.
Winning a $250,000 Pepsi Refresh grant would truly transform CABF's ability to provide support, information and hope to thousands more families.
WE NEED YOUR VOTES. REMEMBER - VOTING IS AS EASY AS 1- 2 - 3.
VOTE EVERY DAY, EVERY WAY
So take a minute to go check this out. Help me aide CABF in their quest to win this grant. I am also going to start working on some thing more local based in my community and do whatever I am able to do to get advocacy for my child and education for the public where he is supposed to grow and strive.
It has recently become clear to me on so many levels that both education and advocacy for this is very poor. Schools are not as well equipped as we like them to be, medical facilities for some reason are not all on the same page when it comes to it, and general public is pretty much just clueless.
If a child requires a long term care or a permanent residential type treatment, many families have to ship kids out of state, giving up pretty much any time of seeing their children unless they can afford weekend trips and a secondary place to stay while visiting. Which most of us cannot. Money is a huge factor as well, we can;t afford the insane costs of the doctor visits, which most of them need at least 2-4 times a month and lets not even forget the costs of the meds. Most kids are on a cocktail which can consist of 2-3 meds at a time, each one costing a few hundred dollars. Most insurance plans are not great with mental health. There are not many providers in this area and some parents will drive 2-3 hours to a doctor. This can take a toll on several things. Parent's jobs, relationships with a spouse or other children, and even friendships.
It is still a dream of mine to figure out a way to bring as much of this as close to home as I can. These kids need an environment they are comfortable in with teachers,care givers who are educated. We need to not have to drive several hours or ship our kids out of state. We need to not have to file bankruptcy in order to make sure our kids have meds and that the medical bills are not going to collections. This may not be a life threatening illness or disease but it is still very important. We have places like the Ronald McDonald House and Riley Hospital for those terminal patients, they offer parents places to stay while their kids are in treatment. Bipolar may not be terminal but it's pretty permanent or at least long term. This is something these kids will have to go through for most of or the rest of their lives. This isn't like a surgery where we take them in, have the procedure done and 4-6 weeks later, we are all better and going on with our lives. There is also very little published research on Pediatric and Adolescent Bipolar Disorder and what is out there is not very concrete. There are doctors out there who feel that you can diagnose this as early as 3 years old while others feel that it absolutely cannot be diagnosed until at least age 13. It's not as cut and dry as Cancer or other terminal or life threatening illnesses. With an illness, pretty much any doctor can look at you, run some tests, say yep you do or no you don't have it, then offer pretty concrete treatment options that will be the same where ever you decide to go for treatment. Yes OK, there are places out there with more extensive options or those places that deal with the clinical trials. I am not saying that Bipolar and Cancer should be looked at the same way or that having one is better or worse than having the other..So don't go getting all up in an uproar. My point is, if you have a broken bone, it gets fixed, if you rupture your appendix, they take it out, if you are diagnosed with Cancer, they put you on a treatment course. If that course doesn't work, they move on to another one. If you feel ill or are showing signs or symptons, they run tests, take Xrays, blood tests, etc. With Bipolar, mood disorders, the testing is primarily a bubble sheet questionairre where you answer questionos based on behaviors, environments, etc. These tests have no concrete intrepretation and depending on the day you fill it out, the outcome of the results could also vary. There is no X ray or blood test that will confirm a person has Bipolar disorder. Meds are also the primary treatment for this and with children, there are very little FDA approved prescription drugs that are approved for children and also meds affect kids differntly so a drug that works wonders on one kid may not work at all on another kid. There is a lot of arguments out there for "natural" or herbal treatments, or holistic approaches. There is not much research out there on this from a reiable source but more and more parents are looking into these to get away from the meds. The meds may work on the behaviors/moods but we end up messing with kidneys, thyroids, massive weight gain or loss or other long term health issues. So it's a vicious cycle and a lot of parents are at a loss on how to properly treat their children for something they may have to live with for the rest of their life.
OK so, as a part of being involved in a couple different parent or support groups, I have learned recently that CABF is competing for $250,000 in grant funding in the Pepsi Refresh Contest. Their main goal right now is to work with the blogger community to help secure funding for bipolar kids through the Pepsi Refresh Contest. So basically each time a blog like mine gets read and voted on, it helps CABF get closer to their goal of winning this grant. Having a grant like that could really help these kids out as well as helping the organization get the word out about advocating and education. I want Jake to be able to feel good about himself and know that what he has is something he can control, not something that can control him. I also want him armed with as much knowledge as he can have. He's only 11 now but soon will be a teenager, then a young adult where I won't always be there to advocate for him. He won't always be in a setting or situation where he will have an aide or where his day is goverened by an IEP.
Here is the actual release from CABF about their entry.
HELP CABF WIN $250,000 From Pepsi
CABF is in the running for a $250,000 grant from the Pepsi Refresh Project this month.
Winning this grant would transform CABF's ability to provide vital information and support services to children and families living with bipolar disorder and depression.
We can't win without you-- and you can help with just one minute every day. Winners are decided by total votes cast by Internet and text message votes throughout the month of November.
Sign up for a daily email voting reminder at http://www.bpkids.org/pepsi
and if CABF wins, a chance to win 1 of 3 iPads.
Vote today, ALL THREE WAYS, and every day in November:
Vote Online: Go to http://www.refresheverything.com/CABFhelpsmorekids. This will take you to the CABF Pepsi voting page. Click "Vote for this Idea". Register once and then you are all set.
Vote on Facebook: http://tiny.cc/cabfhelpsmorekids. The first time you vote via Facebook, you'll be asked for permission to access your information. Click "Allow". This will take you to the Pepsi Refresh Vote & Share application. You will see CABF's project below the search bar. Click "Vote for this Idea". (Be sure to click "share this idea" to encourage your friends to vote for us on Facebook. Do this every time you vote!) If you do not see our project, "type CABF" into the search bar.
Text your Vote: Text 104174 to PEPSI (73774) (Normal text rates apply).
What else can you do to get more votes for CABF?
•Bookmark our voting pages: http://www.refresheverything.com/CABFhelpsmorekids &http://tiny.cc/cabfhelpsmorekids. We need you to vote every day in the month of November. Anyone age 13 or older can vote. (Feel free to vote for other projects as well -- just not for any other projects which are also requesting a $250,000 grant).
•Tell your friends on Facebook by clicking this image: on the right hand column of the CABF voting page.
•FORWARD THIS EMAIL TO ALL YOUR FRIENDS, along with YOUR PERSONAL MESSAGE asking them to vote for CABF every day. Remember to ask your kids and their friends to vote.
•Print out flyer's and cards which you can give to friends. Hand them out at meetings, sporting events, etc.
Don't think you'll remember every day? No problem! Sign up for daily email reminders for a chance to WIN AN IPAD! If CABF wins the challenge, everyone who registered for a daily email reminder will have a chance to win one of three iPads.
Winning a $250,000 Pepsi Refresh grant would truly transform CABF's ability to provide support, information and hope to thousands more families.
WE NEED YOUR VOTES. REMEMBER - VOTING IS AS EASY AS 1- 2 - 3.
VOTE EVERY DAY, EVERY WAY
So take a minute to go check this out. Help me aide CABF in their quest to win this grant. I am also going to start working on some thing more local based in my community and do whatever I am able to do to get advocacy for my child and education for the public where he is supposed to grow and strive.
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