Posted by Solstice on February 19, 2012, at 13:21:01
In reply to Re: Desperate, posted by bleauberry on February 19, 2012, at 8:58:09
Thanks for writing, Bleu - your contribution is unique..
> This is certainly a heartbreaking story and all of us have experienced, or do experience, to a minor moderate or severe degree. Your comment "worn to a frazzle" only begins to describe the devastation. So sorry!
I appreciate your compassion. There's really nothing as difficult for a parent as watching your child's well-being threatened by something you have little control over.. and it's not like she did anything to bring this on. I would freely and happily offer my life in exchange for her freedom from bipolar... and this is so deeply felt that i would give anything if this could be a trade that could be made.
> Like others have said, Vynase I think is suspect. It doesn't matter that it used to be fine, because of these reasons....
> Our bodies, brains, and diseases are always in motion...not static...and things change/morph with time.This is a good point. I'm going to discuss it with her PDoc on Tuesday.
> While we view meds such as Vynase as therapeutic, keep in mind that when used illegally the end result is almost always bad....any of the amphetamines lead to an eventual downfall...just because it has an authorized prescription attached to it does not change that. That said, Vynase may not be a problem at all, but to me is at least suspect.I'm well aware of the abuse potential for stimulants, but my understanding is that therapeutic doses of stimulants are way too low to provide what an addict would be interested in. In my daughter's case, I'm fortunate in that she is extremely averse to substance addictions. Her father's family has lots of undiagnosed/untreated MI issues, and she has hated what she watched growing up - all the drunken adults, etc. She has some older cousins who have gone on to get themselves in trouble with drugs, etc... and all of this is an extreme turn-off to her. It's all shocking to her, and she is hyper-moral in reaction to watching her own relatives' lives go bad over that stuff.
And remember - there are studies out there that say that with respect to ADHD and the stimulant controversy, kids who are properly diagnosed and treated with stimulants are much less likely to fall into substance abuse. The theory is that kids who are untreated and undiagnosed fall into substance abuse because they are unknowingly 'self-medicating.' Of course, as a parent who has dealt with these issues for two decades, from my foxhole it makes perfect sense to me that an undiagnosed/untreated kid will face social rejection, parental and other authority figure disapproval, and experience a lot of academic performance failures due to school not being a particularly ADHD friendly environment. And as a result, the damage to their self-image can make them very vulnerable to substance-abuse and other social ills (getting in with bad crowds, etc.) Thankfully, my daughter was diagnosed early (if even incompletely), and I jumped right in there to learn everything I could, as fast as I could. So I started very early in my efforts to shape her ideas about herself and about her treatment.
It's funny - her best friend's father is a cardiologist. Very wealthy. The best friend sent my daughter the most amazing, hand-written birthday card. About 7 pages long, lots of written sentiment and adorable drawings. Anyway, the front of the card has a decorative "Happy Birthday" followed by "from your only friend... other than medication." My daughter does have lots of other friends, but this one is her soul-mate BFF and they do see each other as playing an especially exclusive role in each others' lives. Anyway, what that comment told me is that she has told this friend that she KNOWS that her medication is what enables *her* (my daughter) to be on the surface, and not buried underneath bipolar symptoms. So.. at least for my daughter, medication is really what saved her at 14. If the bipolar had not been recognized and treated, I fear I'd be spending my energy dealing with the criminal system and rehabs, because that is where she was headed. But as it stands right now, she is very bright, excels academically (at least before this hypomanic/manic episode took over) - and takes pre-ap and ap classes, has played a lead role in a big play at our very competitive high school, has unbelievable vocal talent and has won numerous awards at solo and ensemble competitions, and plays the piano. So, she has thrived under treatment - until this latest issue - which I am just desperate to get figured out.
That said, I really do recognize that her physical development could easily be factoring into throwing meds out of whack, and she may need less of something, or complete removal of something that has worked before... so I'm going to check on that
>
> Not sure why Zyprexa was not considered, but I would personally put more hope and trust in that one than any of its peers.
>I don't know.. except that her dr did want to start with the ones that are less likely to cause weight gain. And Geodon worked like a charm. Now that we're in this crisis, though, and the Latuda is seeming to fall flat, her dr. is likely to consider other meds
> I think other things need to be looked at. I'm trying to think, what are some of the issues that struggling mothers find in their troubled kids? You know, the guerrilla medicine stuff that patients are forced in to when doctors alone fall short? Well, probably the most common issue is toxicity...usually lead and/or mercury. Might want to study up on DMSA and chelation, if for no other reason to know that the whole issue actually exists and is behind bizarre symptoms of many kids. It is a gray area, and some medical elites will poo-poo the whole thing, and of course their patients are the ones probably staying sick. Mothers know what works. Chelation is one of their more successful tools. Where did the toxins come from at such a young age? Maybe passed on from the mother? Something unknown in the living environment? How about immunization shots, many of which have mercury as a preservative? If a person is defective in certain genes, they will tend to accumulate and store toxins rather than normally excrete them. Thus easy toxicity from even miniscule exposure. And the obvious brain bizarreness that would follow.I've heard about this stuff of course. I know for certain that she has not been exposed to lead. She does not have mercury fillings. She's had all her immunizations, but those were long ago and she had no reaction - in that there were no changes. I have never drank, smoked, or done any drugs.. so she did not get exposed to those things during pregnancy.
>
> Has she tried a gluten free diet? How about dairy free? Many of the gray area pros and mothers find dairy to be a factor in the bizarre psychiatric symptoms of kids. Study up on gluten, how it destroys the cilia lining in the intestines, and how that wreaks havoc on the nervous system by allowing large undigested molecules to enter straight into the bloodstream and of course obvious impact on the workings in the brain.Now the gluten/dairy is probably worth experimenting with. I used to work with a woman who was on a gluten-free diet, but I don't know what kinds of symptoms guten-sensitivity causes.
> Lots of people with lyme disease or similar occult hidden infections display bizarre patterns and histories very much like what you have seen. People freak out because they think that I think everyone has lyme disease, because I mention this all the time, but the true scenario is that if the profile fits it has to be considered and not thrown out in haste. The profile fits. A two week blind trial of an antibiotic such as Doxycycline would provide most of the clues to make a fairly solid clinical diagnosis one way or the other, rule it in or rule it out. It has to be ruled out before tossing the idea away. Only a trial can provide the "pattern" response to know.She has never been in an area that would expose her to lyme disease.. she has never even had a tick.
>
> In terms of meds, wow, that is a tough one. I mentioned zyprexa already. I'm also thinking that in some situations such as this one, the patient may actually do better on a combo of antidepressants and benzos, avoiding the mood stabilizers. Those who operate in a black-and-white world of bipolar versus unipolar would disagree, claiming antidepressants are trouble and mood stabilizers are mandatory. Sometimes yes, sometimes no. Can't make a blanket treatment based on a word such as bipolar or whatever....we have to try stuff to see what helps or what hurts, and sometimes the things we find helpful we can't explain why.Yeah.. we're just now starting on a 'real' med journey. After diagnosis, we first tried Abilify and that was a very quick disaster. She was only on it two or three weeks, and then we went to Geodon and had absolute and enduring success. I don't think her PDoc would even consider benzos for her right now because she is not yet 18 (she made a comment at last apt about being limited in what she can try because of my daughter's age. So.. we'll have to see what PDoc thinks at pt on Tuesday
>
> The whole thing is too gray to approach with a cookie cutter protocol (as in stimulant for ADHD and mood stabilizer for bipolar)....it just aint that straight forward.
You're right. The ADHD/Bipolar combo makes things very, very complicated.
>
> I know you need ideas right now that will help fast. I don't know what that would be, except maybe zyprexa. But since she is so young, there is a real long battle ahead....and that's why I am stressing....screaming from the hilltops actually....to gain firm command of the issues I've mentioned here. Because those are the very issues other mothers in your shoes are finding helpful. The meds by themselves are rarely the answer. We get lucky sometimes, as you already experienced, and that can land us in a false sense of security that we can get lucky like that again and again. I wish. Just don't see that happen hardly ever.
I hear you. Medical science is not perfect.. and there is so much that we don't know. It's what we've got, though, and our 3-year success is proof-positive that it *can* work, and work well. That does not diminish the importance of other avenues, though.
>
> Battle evil with all you've got and every weapon you can get your hands on. Meds are only a part of that war. Next comment maybe could appear off topic, IMO directly on topic, Jesus wants to be involved in this war so if you haven't personally asked Him to join you, something to consider. He promised wisdom to any who would ask for it.Well, I don't want to see bipolar as 'evil,' because I don't want my daughter to see herself as at war with evil. She's got a lifelong illness that she's going to have to manage and stay on top of.. but there are some flip-sides to it that are kind of positive. She's very creative, funny as all-get out, and a very interesting, lively young woman. We're just in crisis right now.
>
> I like all the approaches mentioned here (wish they were my own ideas). What I like about them is they demonstrate true healing potential, risks are low, expense low, and suitable for a lifetime.
YOUR ideas are equally valuable, and I thank you for contributing them.Solstice
poster:Solstice
thread:1010739
URL: http://www.dr-bob.org/babble/20120212/msgs/1010839.html