Recent steps on our path
A week ago Friday, we drove over 200 miles to see a Naturopath/MD Psychiatrist who indicated that she could no longer help with the meds. Our local psychiatrist has retired and it's another month before we have a somewhat local psychiatry intake appointment.
Our daughter had been raging again, with dark circles under her eyes, napping by day, but not sleeping well at night. I've been impatient waiting for further med reductions. That Friday night, we cut her night time Risperdal by ½ to ¼ pill for a total of 0.625/day. That was the first time we adjusted pharmacuticals without the doctors. That night and for 4-5 nights, she slept really good and was again a perfect sweet angel.
Then, late last week, the rages came back double. By Friday afternoon, it looked like she was going to be in the hospital again. Much of what we've worked for would be lost again. On Saturday morning we cut her Intuniv from 3mg to 2 mg. This completely knocked out the rages, but she did not sleep well and was up at 2:00 AM Sunday.
Sunday morning, she was in a low-level mania, but for the first time ever, without the rage. We bumped up her low-level lithium to 240 mg/day. Sunday night, she was again up at 2:00 AM. Today was another low-level mania without rage.
Tonight, we gave her 5 mg of time release melatonin, which is another new first for us. Right now, she is sleeping in our bed and I will sleep on the floor (anything so we all can get a night's sleep).
Let's hope she sleeps through the night tonight and that she gets back to normal.
Brian
--
Daughter 7 BP/violent rages. Risperdal + Intuniv + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium.
I noticed that Brandon would react after 2 days of the reduction. As soon as we did the reduction on day 3, he was a perfect angel again. I think you are going to have to wean the meds every few days, but that is my opinion, and in my limited experience. Will True Hope give you some guidance? Maybe let them run the show for a while? Brandon needed to wean off his meds, sooner the better for him. Will be off all in 5 days, may make it three. He is doing well and I am seeing more and more stability. When we did reductions, we had to reduce everything at the same time. I would call support today and get them on board and have them tell you how to proceed. Hang in there. Why is the one not willing to help with meds anymore? Bc the other doc was taking so long? Also, personally, I would not touch Lithium without a doc bc levels need to be monitored and the way EMP intensifies things, that would make me very worried.
--
Kim 33 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec
Brandon 15, BP 1, ADHD, possible Schizoaffective, possible PDD-Mayo says no, Meridell yes, pdoc no
EMPower Plus-started 11/7 currently 5 caps TID, AminoPowerPlus 4 BID, Lamictal (weaning), Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
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.
Just like what happened with Brandon... when my girls had a med reduction it wasn't the next day, but the day after that they started going through withdrawal symptoms. Those symptoms would then last several more days, peaking in the middle then slowly subsiding. I think they reduced about every 7-10 days, giving themselves a couple days withdrawal-free in between. (But when I was going through Cymbalta withdrawal, I felt it by afternoon of that first day!)
For the sleep stuff, you may want to read this over: http://itsnotmental.blogspot.com/2009/01/sleep-timing-of-melatonin-light...
During the time of withdrawal, we did sometimes use a benzodiazapine.
--"Naomi"
ItsNotMental-Author Page
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 EMpowerPlus back on just 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.
An update from our house:
This weekend we finally taperd off the Intuniv. It's now been 3-4 days since the last dose and our daughter is now a very happy little girl. The instability that was nearly hospital bad is gone.
It was a bit of a battle to get rid of the Intuniv. Every 2 weeks, we reduced by 1 mg. Each time was met with 5-6 days of poor sleep, agitation and anxiety. When we went to pull the last 1 mg, it was too rough. After 1 day, we added back 1/2 a pill for 3 or 4 days, then went to 1/4 pill for a full week.
We did this all without a psychiatrist involved at all. Big thanks to everybody on these forums with all kinds of good suggestions.
We did work with a local naturopath who helped us with diet (not meds). In this same time frame, we have removed all grains and starchy foods from the diet, as well as only 1 small helping/day of a low glycemic fruit. She is a fery picky eater and introducing this diet was tough. Now after several weeks of a diet consisting solely of eggs, preservative free bacon, nuts and cucumbers, she is now starting to come around a bit to eating more vegetables and meats.
Our current plan is for about a month to concentrate on diet and yeast overgrowth. Then, to start a slow taper of the last of the Risperidone. Unless she has over-medicated like symptoms, we will probably pull the last 0.625 mg over a few months.
Lastly, our local naturopath agreed to give Dr. Popper a call. It will be interesting to see how that turns out.
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.
Glad things are improving! You are starting to move a little faster now. Brandon is now off all meds for a month. Waiting for the vitamin D to kick in fully and the copper to get out of his system, then we can see what we have left.
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
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.
Brian, I am so happy to hear all this!! We hope to be where you are this summer. The weaning off the Abilify is just too much with public school hanging over our heads.
Continued good times for you and yours!!
--
Kimberly, 47, mom to E, 6: ADHD, Sensory Integration Disorder and Intermittent Explosive Disorder taking Abilify, Empower Plus, Aminos, Inositol, Choline Bitartrate, Salmon oil, Vitamin C; melatonin at bedtime. We are a Feingold Family!
DH, 46, wishing he had a job outside the home
This week we completely stopped the Risperdal. This week, we also bumped up the EMPower to 15/day.
She had been having some trouble taking her supplements and eating, which led to some instability. This past Friday, she missed a morning supplement and that morning was a bit rough, but not bad. Then the next day, missed the dose on Saturday PM. That following Sunday morning was a quite rough, but short lived and not like last year. This week is good so far.
The only prescription meds left is about 200 mg/day of lithium citrate. I'm really not to worried about reducing that one. It is already below the side effect level. I wouldn't mind leaving it there for a lifetime. But just the same, In a few weeks, I'd like to start working to get that under 100 mg/day.
We are doing the happy dance. It is really nice to come home to a somewhat normal house.
Brian
--
Daughter 8 BP/violent rages. Unsuccessful with multiple meds. Now almost 100% stable (Since before Christmas, but with a few minor regressions). EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol + vitamin D + theanine. Diet: mostly meat, eggs, veggies, nuts and limited fruit. No dairy, wheat, rice, corn, soy , grains of any kind, vegetable or corn oil, processed sugar, starchy foods, food colorings, food preservatives, chemical names on the label, caffeine (chocolate), nor "natural flavorings". Loves home-made non-dairy ice cream. No more Risperdal!!!
Son (5) Normal. Same diet and similar supplements.
Wife (CathyK now also on TBMF) BP, on same diet and similar supplements & reducing meds.
Me same diet and supplements, with hopes to prevent Alzheimer's and ALS.
I'm so happy for you and your family Brian. I know that you are doing most/all of this right now without a doc so kudos to you guys!!!
Angela B
Simpsonville, SC
otboyd@yahoo.com
Hilary (DD)-4yrs old. Mood Disorder NOS, ODD. Supplements: Kavinace, Melatonin, Inositol, Omega 3, casein/dairy/gluten free diet
Gavin (DS)-17 months
DH-43 yrs old, Diagnosed with Dependent Personality Disorder, Depression, Anxiety with Panic Attacks
Me-40yrs old, No dx, no meds
Brian those bumps and bad moments due to missed doses will get better. I remember when just missing a single pill from a dose would result in our son becoming unstable. But these days if he misses a dose or does not time a dose just right he is fine. So be patient. Your daughter is young and things will only get better over time.
Congratulations and I too am doing a happy dance for you.
--
Jistac
Mother of 3 (23,20,17) with a variety of mental health issues. Been involved with using Empower as a treatment since 2003
Glad to hear! So AWESOME! Keep up the good work!
--
Kim 34
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, corn allergy
Iron and Mirapex for PLMS, Lunesta, Xyzal
Brandon 15, BP 1, PTSD, IgG allergic to gluten, casein, soy, eggs, and peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 5 caps AM, Choline 600 mg BID, Vitamin D 10000 IU, Inositol 4 gm TID, Zinc, OLE, Synthroid, Magnesium PM, Melatonin 6 mg
Homeschooled
Chris 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism, Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
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.
Brian that is great news! I'm like you with the low dose of lithium. I have found that I need just a little bit to feel best. It is a mineral that I believe my body just needs to function well. Or maybe it just helps my brain heal from the various injuries due to inflammation, etc.
--
Brenda,51, TBMF Parent to Parent Volunteer
Mom to A, 17 1/2, BP, Tourette's, OCD, ADHD: Eskalith CR, Lamictal, Cytomel, Allegra
E, 16, BP,AS: Seroquel, Eskalith CR, inositol, Buspar
B, 14 1/2 & H, 11 1/2
Married 18 years to DH, 51
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.