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Post by ohmama on May 2, 2006 10:15:11 GMT -5
How are you spacing the Seroquel doses? With this med it is important to be sure your doses are spaced to avoid any meltdowns. You can figure out how to do this by charting since each person is different when there are mood issues.
Example... my boy gets a total of 600mg daily. When he gets up in the morning around 8:30 he takes 300mg Seroquel (along with 600mg Lithium and 1000mg Depakote ER), then at 1:30 it's a dose of 200mg Seroquel, around 7PM he needs another 100mg (along with 600mg Lithium). This keeps him from being activated without sedation (stable). Sometimes he also requires an additional 100 to 200mg of the Seroquel PRN.
If I were to give the Seroquel dose any later than on this schedule we would have a meltdown or sometimes a rage. At first it was very sedating till we reached 400mg. Now there is no sedation, there is a real therapeutic benefit but we need to keep the dose about 5 hours apart. The spacing of the doses keeps the Seroquel more even in the blood and so we avoid the radical behavior swings. It took me a long time to be aware of his cycle and how to get the most benefit from this med because I didn't chart. Once I realized his unique pattern I was able to better help him.
Is your boy taking any other meds besides the Depakote and Seroquel? It's a real balancing act, isn't it?
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Post by Mayleng on May 3, 2006 7:55:18 GMT -5
My friend Suzanne sent me this. Thought you guys might be interested in it if you haven't read it already.
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Post by ohmama on May 3, 2006 11:23:09 GMT -5
That is an excellent article and I wanted to comment on it but I'm on my way out of town so I will just say this....
Without the antipsychotic Seroquel, my son would be in an institution. I am so grateful for the psych's who Rx them correctly. In times past that's exactly what happened to people with the need for antipsychotics. Nothing is "perfectly safe" but is often necessary despite the risks.
Anyone struggling with bipolar or schizofrenia knows what I'm saying. I wish there was another reasonable way to go and someday I hope there will be but I can't wait for it to be discovered. I also hope the doctors who treat these disorders will become more educated on making the correct dx and use these powerful meds with caution. More study's need to be done with the use of meds for children that's for sure.
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Post by Gillian on May 6, 2006 17:39:43 GMT -5
Doc has just suggested we give all the Seroquel dose (300mg) in the evening. The thought is - the Seroquel is making him have a huge appetite and if we give it him in the evening maybe he can sleep through the worst of the hunger effects. I don't know though.
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Post by Gillian on May 6, 2006 17:41:36 GMT -5
He has had 2 major meltdowns today and one last night - our walls are destroyed again - no meds seem to work for him. Aaaaaugh!
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Post by Mayleng on May 6, 2006 19:00:06 GMT -5
Gillian  , I am praying things get better soon. |
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Post by swmom on May 6, 2006 19:17:24 GMT -5
Yes, me too, Gillian.
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Post by ohmama on May 7, 2006 11:29:03 GMT -5
Gillian,
Has your doctor said anything about using the mood stabilizer Topamax for weight/hunger control? If you have the book "Straight Talk about Psychiatric Meds for kids" you can check this med out. It is used for people with eating disorders and is a mood stabilizer.
We would have meltdowns also if I gave the Seroquel all at one time. It really needs to be spaced out to have the stabilizing quality that you are looking for. I don't follow the reasoning of your doctor on giving it all at once. I would think that this could make side effects worse, not better. It will not stay even in the blood for 24 hours. I hope "Dad" will comment on this as he is very experienced with Seroquel. He was having trouble with his computer logging on to our site but hope it is fixed now or will be shortly.
Since you are not having good results with giving the Seroquel all at once do you feel comfortable with giving it more spaced out (200mg in the AM and 100mg PM)? I think it is possible that you will see the better behavior your family so desperately needs if you will try this. He is not still taking an SSRI, is he?
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Post by 2pearl on Jun 14, 2006 21:29:47 GMT -5
((((Gillian))))) We are having trouble again. It's been building gradually over the last 8 weeks. DS has been getting into fights and he's been having more troubles with rebound. Usually the fights occur during this time but not always. Keep in mind we just moved last Thursday and while he's very excited and happy it is still an upheaval that has us all off balance. I don't think it's the move though. His meds have not changed at all. I'm considering taking him off the concerta for the next week to see if thats the culprit. We just had his blood draw today so we'll wait and see what the depakote level is. Increasing the Abilify is not an option because of the tremors. I'm wondering if it's ever neccesary to switch to another Anti-Psychotic? We definately need to make some changes and of course we don't get in to the psych again for 3 more weeks. 
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Post by ohmama on Jun 14, 2006 23:26:18 GMT -5
Pearl, Many report on the bpkids site that changing to a different anti-psychotic has been a real help. It does sound like a good idea to stop the Concerta as you say. I'm not familiar with stims though. Can you do this all at once or does it need to be tapered slowly? You may find that when you do remove it, you will be able to see more benefits from the Abilify. So, may not need to change to a different anti-psychotic after all. I hope it gets better, keep in touch. Ask your psych about the 2D6 testing to find out how he metabolizes meds as this will help to know if you are using the best ones for him as well as the doseages he needs. Check out this site for further information. Many have found it to be a tremendous help to have this information. www.healthanddna.com/drugreactiontest.html |
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Post by 2pearl on Jun 16, 2006 14:59:20 GMT -5
Well we had to go in for an emergency psych visit yesterday. DS is very destabilized or whatever you want to call it. Here is the plan that the psych came up with that we are currently implementing.
We have elimated the 18mg concerta for the next two weeks.
If he gets better then we know it was the concerta. Then, we are going to cut the Abilify in half. He is on 10mg to counteract the effects of the concerta so at this point he could be on too much Abilify which could make him worse.
If he does not get better after removing the concerta and cutting the Abilify then we are going to switch to another AP. She also mentioned trying topamax or the bedwitting one ( can't remember what it's called) for the ADHD symptoms.
He is a good 3 inches taller and 25 pound heavier than he was when he started on the current med combo so I guess it's time for some changes. It's very scary to be back on the med go round though.
This is day 2 without the concerta and he is practically narcaleptic and eating non stop. I wish there was something I could do to about that.
I discussed the link you gave me about the 2D6 testing and the psych isn't aware but said she is willing to try it if I send her the link. I also brought up the Truehope thing to see if she had heard about it but she hasn't. Again, she said she'd be willing to take a look at it.
Ohmama how is your son doing on the Lithium?
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Post by Beverly on Jun 16, 2006 15:51:40 GMT -5
2pearl My ds did not do well on Concerta when it was tried in 3rd grade (he's just graduating 8th now). He stated that he wished he wwas dead. I am sorry to hear you are back on the roller coaster.
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Post by ohmama on Jun 16, 2006 16:44:33 GMT -5
Pearl,
Lets see if I have this right.... He is taking Depakote, how much and what is his blood level? It is important to know the blood level.
Abilify, but eating like a horse.... this med is well known for causing carb cravings. Over eating is also associated with being unstable, like a form of self-medicating with food. His blood sugar is probably out of whack. We haven't had any problems like this with the Seroquel.
The Concerta has stopped. This could also result in non-stop eating, rebound, and being tired as the med is still leaving his system.
Have you looked at the bipolar treatment guidelines? It is recommended that two mood stabilizers may be necessary in addition to an anti-psychotic. We are using Depakote and Lithium (mood stabilizers) along with Seroquel (anti-psychotic). This combination is working well though I still occasionally need to give him an additional small dose of Seroquel when he is showing signs of mania due to stress.
If you decide you want to try Empower please look at the Alternative board over on the bpkids site for the very best advice. This is not something you can approach as a do it yourself as it involves weaning all meds and balancing with the right amount of Empower. You can check out the Truehope site also or call them. They have a physicians package for your doctor to be able to work with this. There are several parents who are having success with it over there that now have the Complementary & Alternative Med section open to all this discussion.
I am impressed that your psych is willing to look into the 2D6 testing as well as working with you on the Empower! It's too bad more doctors are not aware of this testing. I can literally save lives.
I know this is extremely stressful for your family right now but don't forget to work in shifts with your husband or someone else who can give you support and a little time off to catch your breath.
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Post by 2pearl on Jul 6, 2006 13:38:50 GMT -5
Well after a bit of experimenting we have pin-pointed the stimulant ( of course!) as to what is activating him. After a few days even the short acting ritalin produced the same results.
He is off stimulants completely and we have reduced the Abilify by 1/2. His moods are stable but now we have a return of all the hyperactive/impulsive behaviour. Plus abilify makes him kind of silly.
I really wish there was something else we could try to control his hyperactivity.
Anyway, I'm also wondering if any parents of BP kids notice a pattern in their behaviour. This is the EXACT same time he fell apart last year. It seems like more than coincidence as he was doing so well. Just wondering.
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Post by ohmama on Jul 6, 2006 23:17:53 GMT -5
Pearl,
It is not unusual for a child to be affected by the seasons and the weather. Summer will bring about mania due to the increased sunlight and winter can bring depression. Those who suffer from depression will use light boxes to stimulate serotonin increase during this time. Another thing that seems to trigger episodes is when the barometric pressure changes all of a sudden. I always know when a storm is coming because my boy gets very manic and runs all over the house acting foolish.
It is important to chart behavior so you can figure out the cycles and have some idea on what to expect.
Are you seeing hyperactivity or is it more like mania? When you say he is acting silly and hyperactive I wonder if it could be mania? I found that the Seroquel calmed this in my boy. No food issues either! Why are you cutting the Abilify dose?
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Post by 2pearl on Jul 7, 2006 11:55:28 GMT -5
ohmama,
It is definately not mania. The silliness is something we observed when he was just taking the Abilify before we added the stimulant. It is most noticable in the evenings but is not anything like the mania I've seen before.
We are cutting the Abilify because he was taking a higher dose to counter the stimulants. Now that he is no longer taking stimulants the Abilify seems to be waay too much. We've gone down from 10mg to 5mg and his tremors are gone and also the constant eating.
He has actually been doing very well the past few days. The most interesting observation I have is that he is actually focusing better OFF the stimulants.
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Post by ohmama on Jul 7, 2006 13:57:56 GMT -5
Pearl,
Whenever you can successfully reduce a med like Abilify it is always good news. I'm glad to hear he is doing well, other than the hyperactivity.
Because stims are out of the question for us, and so many bp kids, I have found the Omega 3 to be the best thing for hyperactivity. I don't remember if you are giving this to your boy? There is a fine line between hyperactivity and mania and one can develop into the other. For mania, the Seroquel has been the answer for us, but for the hyperactivity it takes a high dose of Omega 3's.
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Post by 2pearl on Jul 7, 2006 18:16:43 GMT -5
Well, I won't uncross my fingers yet ( will I ever?)
Yes, he is taking Omega 3's, perhaps I should consider increasing.
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Post by ohmama on Jul 7, 2006 22:27:27 GMT -5
I have to give a high dose, we are up to 1600mg EPA & 800mg DHA twice a day for a total daily dose of almost 5 grams. This seems to keep both fire-boy and his brother (recently diagnosed bipolar) stable. I'm using the RxOmega-3 Factors by Natural Factors. My husband and I also take this dose. We are all a little touched with mood disorders in our house.
I have tried reducing the dose but always the hyperactivity shows so we are keeping it at that. I don't know what the average dose is for a bp kid since everyone is different, but have read it is quite high compared to treating for adhd. Have you read Dr. Andrew Stoll's book, "The Omega 3 Connection" yet? It's a great read and is full of info on using this for bp and mood disorders.
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Post by 2pearl on Jul 7, 2006 23:12:52 GMT -5
I'll definately look for it. I can always count on you for great book recommendations.
How is everything going with the Lithium?
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Post by Mayleng on Jul 8, 2006 7:18:51 GMT -5
I know Omega3 is good but I wanted to share with you our experience recently. My ADD/Inattentive son had been off meds since vacation started (June 16) and also off all supplements. He has been doing very very well except for his focus (which is Ok since we didn't have any academics to do this summer). He has been happy and even though focus is not at optimum, he is still able to remember to do stuff after a couple of reminders. I decided to start him back on supplements yesterday - he only took one RX Omega 3 Factors capsule, 100 iu Vit E and 200mgs Magnesium chelate. Because he gets nosebleeds, I have not given him Omega3s in a while now. Anyway, long story short - he started acting silly, making weird nosies and was just annoying . Now this is a quiet child and while he can behave this way without meds at times (normally the first day off meds), he has been doing great since June 16. He even came up to me, and told me he doesn't know why he is behaving this way, and asked why did I give him pills that make him act this way. He was Ok later in the evening. I suspect it is the Omega3. Omega 3 makes my hubby grumpy.
So don't forgot to look into Omega3 to see if maybe it is affecting your son negatively as it seems to do for my son and husband.
I take Omega3 myself, and it does not have any negative effect on me.
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Post by ohmama on Jul 8, 2006 10:25:36 GMT -5
Mayleng, You bring up a good point on the Omega 3. I remember Cat talking about this in regard to the additives found in various supplements as being suspect. Then there are others who just cannot take any Omega 3 at all or can only tolerate a small dose. I'm sure glad that's not me. Pearl, The Lithium has been wonderful. My boy has been stable for quite a while now. I wish the psych had started him on this first off. For some reason that I don't understand, he didn't want to Rx this med?? After reading about the neuroprotective qualities of Lithium and how it is the gold standard of treatment for bp, I insisted on trying it. With twin #2, we started him off immediately with Lithium and it has been like a miracle. No side effects, his mood is stable and he is happy. His bp is more mild than his brother and now after taking a small dose of Lithium, you can't even tell he is bp! Same good results for my sisters kids, the change is remarkable with them. Their bp was very apparent, here's a few links if anyone wants to research this med.... "Lithium Neuroprotection" www-ermm.cbcu.cam.ac.uk/04008385h.htm"Molecular Effects of Lithium" molinterv.aspetjournals.org/cgi/content/full/4/5/259Lithium information from the Madison Institute www.miminc.org/"Lithium reverses bipolar brain abnormality" www.psychiatrymatters.md/international/news/2004/week_44/day_1/lithium_reverses_bipolar_brain_abnormality.asp?C=7752238940683287037 |
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Post by 2pearl on Jul 10, 2006 8:55:12 GMT -5
Mayleng thats a good point. I had forgotten that some people react that way to Omega 3. Great news about your son though. Are you considering keeping him off the stimulants when school starts?
Ohmama, I am soo happy to hear how well your boys are doing. That is fabulous news.
The last 3 days here have been quite remarkable. After the intial few days of silly/hyper stuff ( after removing all stimulants and cutting the Abilify from 10mg to 5mg) my son is doing great again. He's happy, calm, focused, playful, energetic and not eating us out of the house.
I'm thrilled that he's doing so much better after reducing so much of his medication, actually even a bit confused. I have learned that even though he did well initially with the stimulants it always ends up this way. He just simply cannot take them.
Thanks for the links, I'm going to go read them right now. Depakote has never had any visible benefits for my son and before all the recent trouble we were planning to slowly start weaning him off. I've been interested in learning more about it.
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Post by Mayleng on Jul 10, 2006 11:05:47 GMT -5
2pearl, my son would not survive school without the stimulants. He needs it for focus. Right now he is happy and is managing but that is because we don't have to do academics. He is still absentminded. So he will go back on the stims a week before school starts to get him used to the meds again.
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Post by ohmama on Jul 10, 2006 15:15:10 GMT -5
Pearl,
Isn't it great when they are stable!!! It sounds like you are doing well yourself and that always helps. The Depakote must be doing something good since he is stable. It looks like you found the right formula in your doses too. When things are going so well I would really hesitate to make any changes.
We are enjoying the summer, is this how "normal" kids are? I love it.
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Post by 2pearl on Aug 3, 2006 17:48:39 GMT -5
Thought I'd post a med update. The psych has been slowly reducing Ds's abilify dose. With each decrease he actually improves and now finally yesterday she gave the word to remove the final 2.5mg. He is now on nothing but depakote. So far so good.  |
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Post by d on Aug 3, 2006 17:51:12 GMT -5
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Post by ohmama on Aug 3, 2006 19:12:10 GMT -5
I hope this keeps up for you  ! It's always good news if you can get by with less medication and it's always there if you need it again. |
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Post by Mayleng on Aug 3, 2006 20:28:46 GMT -5
happy* good luck. Hope it continues to be good. |
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Post by 2pearl on Aug 4, 2006 12:24:01 GMT -5
 Thanks!
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Thanks!