What to do when nothing helps?
Lithium MIGHT be helping, but if it is, thank goodness. The mania isn't there anymore, but the psychosis is bad.
Invega 6 mg. has not replaced Risperdal 6 mg., and I am so tired of the vascillating mind. It comes and goes, along with the moods, etc.
No meds have given relief in such a very long time. What if nothing works??? Before giving up completely, I am hoping she will try taking
Risperdal again. As her mind comes and goes, so does her talk about whether she will or will NOT use risperdal.
Has anyone ever used Haldol successfully? She isn't helped by any of the newer antipsychotics.
Still haven't tried clozaril, but have had doctors refuse to try it. Same with ECT, which she is always asking for.
Since her mind is "jarred" into near normalcy with med changes, adding or subtracting, but then she goes back to her "normal" moods and
instability, I am wondering if this is an indication that ECT would benefit, or is this how it is with all people? The only time we see her "good" or
nearly normal in her moods and functioning levels and clear thinking ability, is when a med change has shaken her up. But it never lasts long.
Sorry so many ideas and questions all at once. Tired of the road and not knowing which way to turn.
Also, read on here that older doctors are better than younger ones. Any merit to that?
Wondering, wondering, wondering,..............
--
Pilgrim, dd 21 , BP, PDD, PTSD; FASD, different meds being trialed.
Hi Pilgrim,
My ds did well on a combo of Haldol and Thorazine. He was stable for 6 mos on these plus Lithium and Lamictal. Has she tried two antipsychotics (AP) in a combo? For him, I think Thorazine is a good med to use with another AP (few s/e). The Haldol eventually caused severe EPS which Cogentin couldn't manage so it was d/c. My son has severe psychosis we always battle even though his mood is stable.
His pdoc doesn't want to try Clozaril either, for good reason, but that may be our next choice. It does require weekly blood draws. IMO, as long as it is monitored, the WBC would tell whether he could take it or not. Like you, I'm not sure the pdoc will allow it although she has mentioned it in the past. I have been trying to get other's input about different APs with not much luck. Ds has been on all atypicals except Saphris and Latuda. He is coming off Risperdal while not knowing which AP(s) will replace it. Wonderful !!!
The sad thing about young doctors is they don't learn about children until after they are in practice. They must supply their own additional education in seminars and the like. Your dd is older so IMHO, it would depend on the doctor him/herself. Some keep up with new treatments and some just don't.
I've been reading your posts and feel terribly for you and your dd. I hope she finds relief soon.
Kathy
DS 7, DX: BP1-Mixed w/psychotic episodes
Current Meds: Lamictal 200 mg, Lithobid 900 mg, Risperdal 3.5 mg, Tenex 1/2 mg, Time Release Melatonin
Co-mod Very Young w/Laura, Ginny, Amber and Angi
Co-mod Adoption w/Chrisa
Co-mod Support 12 w/Heather
“The school’s #1 priority is educating my son. MY #1 priority is keeping him alive. My #1 priority is more important than theirs.”
" Our anxiety does not empty tomorrow of it's sorrows, but only empties today of it's strengths."
Personally I have found that doctors associated with a teaching and/or research hospital are the most willing to try all sorts of options and are the most knowledgeable. Currently my dd is seeing both a pdoc and a tdoc associated with both and the level of care is unparalleled. The docs ask the right questions, listen to what I have to say, offer novel suggestions and generally treat my dd as a whole person rather than a collection of symptoms. I get the impression that they are very interested in my dd in the way someone is interested in solving a puzzle - looking at all the pieces and making sure they fit right. Also, because they are part of a larger community, if they do not know the answer to my specific questions, they will ask around and get back to me.
Good luck!
--
Karenj
Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Bipolar I (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel XR 400mg - morning: Seroquel 50mg evening; Lamictal 150mg - morning
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive
Karen,
As for my experience, I will say : it really depends.
Of course I am in France, so it may make things different than in the US.
My psychiatrist was (and still is) working in the research field.
But with her, it was a catastrophe : she told me that since I went out of group therapy crying and with suicidal ideation (it reactivated a huge trauma), I didn't want to get any better. That 26 yo is too late to go back to study, so I have to be in protected work yard all my life and not to hope anything else for the future. That I will never be able to be a jurist. That deafness can't make anyway any kind of problem to socialize (I beg your pardon ?).
She let me go away while I was crying after the seance, telling me that she has better do.
She works at hospital because she wants to be in the power. She is obsessed by social respectability, by fitting in the boxes, if you don't, you are not a deserving person. If it were time of WW2, she would have been like a State worker who sends the Jews in the lager, without wondering if follwing the rule doesn't make more harm than good : she wants to thick the checkboxes, that's all.
She is a psychorigid who harms a lot. I had to prove her that I deserved to receive medical care, which has not anything to do with a therapeutic relationship.
I quitted her because I was feeling in danger with her : the day that I would have been in an emercgency situation, I can say right from intuition that it would be nothing good at all. If she would have had the possibility, she would have asked a guardianship for me (mom says that if she were doing this, there would have been a good reason to scream. GP sings exactly the same song).
I couldn't continue like that, otherwise, I was running into my own vulnerability and my own loss.
After talking with her and with her fellow teacher, GP thinks that there is no other solution than changing. That I have first of all to protect myself, that I have no reason to prove to this pdoc that I deserve medical care.
I can also say that there must be some political issues with this pdoc, as she scremed to me when I refused to subscribe at the French association for ADHD. Which is, for me, quite strange : if she screams when I refuse to adhere, it means that she has links with this association. And it's perfectly illegal in France for a physician, especially at public hospital (as she works at public hospital), to oblige a patient to subscribe at an association.
Where does the world go ???????
In a few words, it's really a question of person.
Some will work in this kind of comunity because they need to have a power. A way of solving their own personal issues.
Not all researchers are like that, thanks God !!
But it's not because the psychiatrist is a researcher that he will be willingful to help you or your daughter.
It's, unfortunately or fortunately, a matter of person. Not much of fonction.
--
25 yo, ADHD, sensory issues, Maths LD and prelingual Single Sided Deafness.
Preparing myself to go back to university to study Law (hope to become a lawyer).
Interests : languages (I speak French as mother tongue, Italian, English and Modern Greek), medicine, law, computer.
Pilgrim,
I'm just wondering that when you say you failed trying natural methods, what is it that you tried? Did she work with the help of an integrative doctor who specializes in treating mental illness? Did she do an array of metabolic tests that are distinctly different than the run-of-the mill doctors office tests? Did she work on both diet and supplements? Did somebody take a thorough look at her hormone levels? Did she read and does she follow both the GAPS book and the UltraMind book? Most of all, did you both really commit to the CAM techniques to where nothing is going to get in the way of making it work?
I would suspect that there may not be much that can be done while your daughter is in crisis. But, I would also bet that once she settles down a bit, she could knock down a majority of her symptoms through CAM techniques. It may not be the whole answer, but at the least, it would make the meds more effective.
Brian
--
Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (with a few regressions some time ago) on Risperidone + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol (No more Intuniv!!!)
Son (5) Normal
Wife (CathyK now also on TBMF) BP, & trying to wean off the meds.
Yes, to answer most of your questions, we did use an MD Psychiatrist, but one listed on the site we were referred to. Michael Schachter at the Schachter Center in Suffern NY. He is excellent. You can look at his center online. We drove 3 hours to just outside of NY City to access his services. And yes, he did many and varied tests to see what levels were and to try to bring things into balance. We used EMPower Plus and their amino acids, which did not work for her, so we had more tests done and actually had a customized mix of amino acids made for her. We do still work with the diet quite strictly, eliminating all the obvious, such as chemicals, colorings, etc., but also eliminating gluten, dairy, as well as eggs, soy and corn. We eat a healthy diet and read labels.
But she has many things she is dealing with, as well as organic brain dysfunction caused by drugs and alcohol intrauterine, so her case is complicated.
We try our best with balancing things naturally, but also have to use some meds to prevent totally losing her. I am sure there would be other clues if only we knew what they were.
And weekly counseling by an excellent therapist.
Thanks for all your concern and suggestions,
Carrying on,
P.S. Lithium and risperdal are what works best for her, although right now she is on invega instead of risperdal, and lithium. I will look at those books you mentioned, as I am a reader. I have STUDIED, GOOD books, in the hopes of hitting on something myself and trying to understand better what is going on and how to address it. But never the GAPS book or the UltraMind book. So I'll give them a read.
--
Pilgrim, dd 21 , BP, PDD, PTSD; FASD, different meds being trialed.
Pilgrm,
I feel like I put my foot in the mouth. It does sound like you are pulling every possible string to make this work.
Keep it up and we really hope you find the right combinations. We are open to good book suggestions,
Brian
--
Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (now with fewer and less intense regressions) on Risperidone + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol (no more Intuniv)
Son (5) Normal
Wife (CathyK now also on TBMF) BP, & trying to wean off the meds.
Where do you find a doctor that would do all of these tests for you? Is there a referral service? How do I find someone in my hometown?
Thank you
--
Paola MDLM
You might not be able to find one in your own hometown. I had to travel several states away with my daughter just to get an endocrinologist who would run a comprehensive battery of tests, even though we have a large University medical center right down the street! (see Psychiatrist vs Endocrinologist: Who is Responsible?)
We go to a nearby town with an MD who specializes in Integrative and antiaging medicine, who has run other tests.
But in my opinion, since psychiatrists are SUPPOSED TO BE just like any other MEDICAL profession, they should ACT like it, and THEY should be running all these tests!!!! But the reality is they don't, and most endocrinologists don't, and the neurologists don't, and the pediatricians don't.... so all that happens is our kids are NOT always getting the best medical care tailored to their specific needs.
We had to cobble together our treatment team, ourselves.
--Jeanie aka "Naomi"
It's Not Mental-Facebook
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
Pilgrim,
We used Haldol for a couple of years, and it worked fairly well.
If the lithium seems to be helping, I wonder if she needs a blood level at the upper limit for maximum benefit?
--
Brenda,51, TBMF Parent to Parent Volunteer
Mom to A, 17, BP, Tourette's, OCD, ADHD: Eskalith CR, Lamictal, Cytomel, Allegra
E, 15 1/2, BP,AS: Seroquel, Eskalith CR, inositol, Buspar
B, 14 & H, 11
Married 18 years to DH, 50
FROM TBMF: 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.
Our DS15 has been on Clozaril for the last 18 months (in combination wtih Depakote, Propranolol and Synthroid).
For him, the Clozaril is the most effective antipyschotic he's tried and has made a significant positive difference. We did weekly blood draws the first 6 months, biweekly the second 6 months and are now doing them monthly. Thankfully, he does not have severe anxiety about blood draws. But he doesn't like them - who would? However he cooperates because of how much better he feels on this med.
The decision to start Clozaril is not made lightly. And the side effect risks are high (note Chrisa Hickey's recent blog post about this at this site). But it can be a very effective medication.
I am also parenting a child with significant in-utero drug and alcohol exposure. The alcohol exposure in particular can cause brain damage which complicates treatment. Med responses are often atypical or not as effective. It is challenging!