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Post by 2pearl on Aug 29, 2006 15:27:27 GMT -5
Oh well. 20 days after dropping the Abilify DS is no longer doing well. His most prevalant symptoms are ADHD but there is some mood stuff as well. No anger or irritability or anything but whose to say that those symptoms couldn't return after another 20 days.... So here is the new med plan. We are replacing the depakote with his previous anti-convulsant (zarontin)- Adding back the lower dose of Abilify and the psych wants us to try the TENEX patch. I did a search for TENEX but came up with nothing. ohmama I'm wondering what you know about this med and Mood disorders. Oh and I did I mention that all of this is just in time for the first day of School? (sigh).
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Post by ohmama on Aug 31, 2006 9:38:27 GMT -5
Pearl, Sorry to take so long to reply, I've been off-line for a while.
The only thing I know about Tenex is what I've read in the "Straight Talk about Psychiatric meds for Kids". It's an anti-hypertensive (blood pressure med) like Clonidine and has a sedating effect. It is used for management of tics and tourette's disorder. Also it helps with sleep so it is good to give at night. I don't think it gives mood stabilizing benefits other than calming down of hyperactivity.
We found that Lithium covers all the bases as far as mood issues go. I also appreciate the neuroprotective benefits of this med. If your psych is open to suggestions you may want to print the info on this from the link posted above and discuss trying it.
I never heard of Zerontin. Was this working for you before?
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Post by 2pearl on Sept 5, 2006 21:17:09 GMT -5
I don't know what has happened. We are an absolute mess. DS couldn't even go to school day he is so "unstable." We restarted the abilify and see that it clearly causes him to be overly emotional. We increased the Tenex today. Why would a MS suddenly not be as effective? Or perhaps it's just a build-up of intolerable side-effect. What kind of side-effects are you seeing with Lithium and Seroquel Ohmama? Do you find this combo to be dulling at all?
I just can't believe this is happening. He's already been sent to the principals office the first week at his new school. I've haven't been a wreck like this in over a year and a half.
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Post by Mayleng on Sept 6, 2006 7:05:52 GMT -5
I am so sorry to hear things have gotten worse. I hope Ohmama can give you some insights. It might be time to look into a different med combo. Good Luck.
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Post by d on Sept 6, 2006 7:39:34 GMT -5
So sorry to hear. Sending and your way.
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Post by ohmama on Sept 6, 2006 11:04:43 GMT -5
I don't know what has happened. We are an absolute mess. DS couldn't even go to school day he is so "unstable." We restarted the abilify and see that it clearly causes him to be overly emotional. We increased the Tenex today. Why would a MS suddenly not be as effective? Or perhaps it's just a build-up of intolerable side-effect. What kind of side-effects are you seeing with Lithium and Seroquel Ohmama? Do you find this combo to be dulling at all? I just can't believe this is happening. He's already been sent to the principals office the first week at his new school. I've haven't been a wreck like this in over a year and a half. Pearl, I am so sorry to hear what is happening. With school starting up again it calls for a realization that stress will cause cycling. It's a sure thing. Even if your boy was stable to start with there is a strong possibility that this could trigger an episode or two. Also, you had a recent change in medications that he could be reacting to. I don't think it's all stress though. I think it's your meds. Neither Abilify nor Tenex are mood stabilizers. As I remember, didn't you stop the only mood stabilizer you were using, Depakote? I have heard that both Abilify and Tenex can cause problems and have a med interaction so wonder if this is what you are seeing? The first thing I suspect is that the medication is wrong or an adverse interaction is going on. Some meds that work all of a sudden will stop working and that can set them off too. What about the combo of Abilify, Tenex and Zerontin not working together? Abilify is one of the most difficult meds to wean from what others have said and it could also be the main problem you are seeing. I think you should replace it with Seroquel as it is apparent you will need an antipsychotic on board to help him stabilize. Some even use Seroquel as the main mood stabilizer even though it is an antipsychotic, it has been the very best for us. The Lithium, Depakote and Seroquel are working very well for my boy. The only side effect is a hand tremor from the Lithium. The treatment guidelines suggest one or two mood stabilizers along with an antipsychotic and I think this is what will fix the problem for you as it has for so many.
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Post by 2pearl on Sept 6, 2006 15:00:14 GMT -5
The depakote is still on board, we haven't switched that yet. I've also heard that Abilify is difficult to wean off of but we weaned so slowly and he was great for nearly a month after. We wouldn't suddenly see withdrawal after a month right? I'm going to call the psych and see about switching to Seroquel and then later either adding or switching to Lithium. How long does it take for Seroquel to take effect? Anyway he has been just fine all day but of course he is still home from school and thus "stress free." We increased the Tenex last night to .2mg and it is helping with the hyperactivity. I also scheduled a meeting with his whole team of teachers for Friday. I think I'm going to just come clean about his mood issues. Thanks for all the support.
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Post by ohmama on Sept 6, 2006 16:58:41 GMT -5
Pearl, I would suggest finding out what the Depakote blood level is so you can figure out if it should be increased or maybe even decreased.
Abilify can show withdrawal after a month and require a small dose to start the weaning process over again. Some have said that they had to keep a small dose in the treatment plan because it was so unpredictable to do without it altogether.
Seroquel works immediately, within 20 minutes, so it is good to use as a PRN. I think the smallest dose is 25mg and should not be started any higher than that as it is very sedating at the lower doses. Once you reach around 400mg you will be at therapeutic level for most kids, everyone is different though and the sedation will be gone. Funny how that works, you would expect a higher dose to be more sedating but not with this med. At the higher doses it is not sedating but calming. It is very important to increase it slowly. I think you will find that you can probably stop the Tenex once you get comfortable with the Seroquel. It calms hyperactivity and anxiety nicely.
If you use Seroquel you may find that you can get by with the 25mg for a long time. We found this to be good for just over 8 months till it seemed to stop working. Then it was time to increase it to 50mg and that held for about a month. Now we are at 600mg for over a year and holding steady.
If your boy is a Lithium responder you will love this med. It complements the Depakote very well and you can get blood levels taken to know if you are at the right dose.
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Post by Beverly on Sept 6, 2006 17:21:58 GMT -5
2Pearl, Sorry to hear things aren't going well.
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Post by 2pearl on Oct 12, 2006 19:23:19 GMT -5
ohmama- My DH has been really insistent about taking DS off of the depakote because of weight gain and overall dullness. I'm glad he's finally involved with this process and on the last visit to the psych he took DS. He and the psych decided to switch to Lamictal. Overall, I've read good things about it and so I've been Ok with the decision. The psych told DH that we could just cut the depakote in half for 5 days and then eliminate it and that we could start the Lamictal while he was weaning off the depakote. Long, long story short, DH took DS camping over the weekend and just "dropped" the depakote ahead of schedule. I hadn't started the Lamictal yet because I was concerned about a drug interaction. DS has been hypomanic now for 4 days. It started about 48 hours after his last depakote. It has truly been the worst 4 days of my life. DH has had to stay home from work because someone has to be watching DS at all times. It's been terrifying. And get this, on the day it started I left 6 messages, 2 emails and a fax with the psych and she didn't get back to us until the next day. Per her directions we immediately put him on 750 of depakote (His last blood level at 1000mg was 120) and 50mg of Lamictal per day. Today he is almost back to normal. He has missed a full week of school. Her goal is to keep him on the depakote for another 3 weeks while we get the Lamictal on board and then drop the depakote. I'm furious with this psych. I really think that dropping the depakote that quickly was wrong and I don't think it's acceptable that I can't contact anyone when there is an urgent situation. Am I justified in feeling this way? I'm glad that DH is involved and one thing is for sure, after the last few days he is no longer in denial about the nature of DS's problems. I hate having to find a new psych but I do feel that this one is very reckless with the meds. I'm just wanting to bounce this off someone and see if I'm over reacting before I make such a big decision. We are going to make an appointment at the AMEN clinic. I hope the wait isn't long.
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Post by ohmama on Oct 13, 2006 17:06:41 GMT -5
Pearl, It is inexcusable for you to be ignored in an emergency situation. Doesn't the psych have an answering service that can call or page her in these situations? Any doctor should have this. The only other option is to go to the emergency room and have them get hold of her. Was it that she was in her office and just ignored your calls or was it after hours and no one was in the office? I would have shown up in her office and not taken no for an answer if she was there. I know what you are describing is the worst situation possible when a child is out of control and going through withdrawal. The Depakote level at 120 is VERY high and does require a weaning process. Now that it is behind you I'm sure you realize the best thing to do was to put him back on it immediately to stabilize and then slowly wean. I am very concerned about him taking the Lamactal while he is still on the Depakote. The drug interaction checker has this combination as a SERIOUS WARNING..... "Your blood levels of lamotrigine may increase and cause a life threatening rash. Your blood levels of valproic acid may also decrease when you first start taking these medicines together." Check it out here... www.savonhealth.com/savonhealth/record/druginteractions/default.aspxOf course I'm not a doctor but it would be worth finding out if taking this combination of meds was as safe as she thinks. I've had doctors prescribe medications that did not go together and my husband ended up with Serotonin Syndrome at one time because of this. Now I always check and double check. I am glad to hear you will be going to the Amen Clinic!! Is there one near you?
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Post by 2pearl on Oct 13, 2006 18:30:35 GMT -5
ohmama, That is exactly why I did not follow her directions and give the Lamictal with depakote like she originally prescribed. I researched it and found the interaction. I asked her about this when we did finally speak and she said "better he get a rash, than be the way he is now." Considering how he was, I had to agree. He stabilized rather quickly after we got the depakote back in him. It has been such a nightmare and he has been so terrified. Honestly, it made me think of a demonic possession in a horror movie. I wonder how many excorcisms have been performed on people who are bipolar? I could see how the two could be confused.
She was in her office. I was even crying when I spoke w/ the receptionist. I've been on the phone all day trying to get him back in Children's Memorial w/ the Dr. we liked at the MD clinic we went to last spring. I'm still waiting to hear.
As for the AMEN clinic, the nearest one is in Washington or Virginia I think. I've been researching this place quite a bit. What are your thoughts on the potential radioactive risks of the injections they have to give before the scan? DH is concerned that we are just grasping for hope anywhere we can find it. Which of course we are but I need to be sure there are some verifiable results. If it can help eliminate some of the trial and error of finding the right meds, it's worth the money.
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Post by ohmama on Oct 14, 2006 10:28:31 GMT -5
Pearl, I emailed Dr. Amen and received this intelligent reply about the radiation exposure... "Nuclear medicine as a specialty has been doing studies on children for over three decades. Other medical specialties use nuclear medicine procedures in children that involve radioactive tracers when indicated, including studies for cardiovascular diseases, cerebrovascular disease, gastrointestinal diseases, infectious diseases, orthopedic diseases, pulmonary diseases, thyroid cancer, urinary tract diseases, epilepsy, head trauma, assessment of radiation injury and Lyme disease. In 2003, Children's Hospital of Philadelphia performed 6,539, and Cincinnati Children's Hospital performed 4,780. It is understandable that lack of familiarity with nuclear medicine would cause psychiatrists to be uncomfortable with the idea of radiation exposure, but this makes them unique among their medical colleagues. It is also inconsistent since the CT scans ordered in every psychiatric residency program as a matter of course involve comparable exposure to ionizing radiation.
The average radiation exposure for one SPECT scan is 0.7 rem. This is similar to a nuclear bone scan, brain CT scan, or abdominal x-ray: procedures that are routinely ordered for common childhood medical conditions, including constipation. These levels of radiation exposure are accepted in medical practice and there is no evidence that this level of radiation exposure increases the risk for cancer in any age group.
There are no data that have ever demonstrated any harm to humans by radiation exposure at diagnostic imaging levels. In fact, current data support the presence of radiation hormesis: that low levels of radiation exposure induce beneficial effects of cellular repair and immune system enhancement....Therefore it should be concluded that neither SPECT nor PET brain imaging procedures are associated with any particular risk over activities of daily living and certainly should not be considered to be any more risky than MRI or any of its associated functional imaging derivatives. Is it not equally important to ask what are the risks of having an ineffectively treated psychiatric disorder?"
As for that psychiatrist's attitude about the Lamictal rash. I can only say that she should be reported to the medical board. The rash is life threatening and a sure signal that the medication needs to be stopped immediately!!! It is not a simple and harmless skin rash. She must be nuts!
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Post by ohmama on Oct 14, 2006 23:49:37 GMT -5
It has been such a nightmare and he has been so terrified. Honestly, it made me think of a demonic possession in a horror movie. I wonder how many excorcisms have been performed on people who are bipolar? I could see how the two could be confused. I know exactly what you mean. When my son came after me with a butcher knife it was like he was possessed. They honestly don't realize what they are doing or saying at the time. That is why it is a real emergency situation.
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Post by d on Oct 15, 2006 8:37:23 GMT -5
Sorry to hear things are not going well 2pearl.
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Post by Mayleng on Oct 15, 2006 8:47:29 GMT -5
, hope you sort out his meds soon.
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Post by 2pearl on Oct 15, 2006 16:31:33 GMT -5
Thank you, he's doing just fine now. Back to his "normal" self. We'll see what happens tomorrow when he goes back to school. On a good note they start his evaluations tomorrow. I have to go in and meet w/ the social worker for my portion of the interview. Hope she has a few hours blocked off!
ohmama, thanks for the radiation info. I've already decided that the benefits outweigh the risks. We are never going back to that psych again.
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Post by ohmama on Oct 15, 2006 19:24:30 GMT -5
It is so good to hear he is doing better now frontclap* . I'm very excited to hear you are interested in the Amen Clinic. Let me know if I can answer any questions about our experience there.
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Post by zachsmom on Oct 17, 2006 10:03:55 GMT -5
ohmama, you may have already answered this somewhere before, but did your sons have any cognitive dulling with the lithium?
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Post by ohmama on Oct 17, 2006 11:49:00 GMT -5
None that I noticed with Lithium. If there was any, it was very minor. I think the Depakote that fireboy is on has caused some dulling though. He took this for a couple of years before Lithium and I did notice at first it seemed to make him a bit slow.
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Post by 2pearl on Oct 17, 2006 21:25:27 GMT -5
zachsmom how are things going? Are you still having success with Geodon?
Depakote has caused dulling with my son. This is the main reason we are trying to switch to Lamictal, that and also the weight gain.
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Post by sonomaval on Oct 20, 2006 8:58:49 GMT -5
To Zach's mom. I would be very interested in your experience with geodon. My son is on day 3 of this med after being started on it intramuscularly following a phych admission. At first, he was totally out of it, but as of yesterday (day 3) I was seeing a very positive change. He is happy and much calmer. Though it is too soon to say how he will do on it long term, It appears to me that it is both helping to stabilize his mood and providing some antipdepressant benefit. Has that been your experience as well? Have you had any problem with side effects or congnitive dulling? Thanks for your help. Sonomaval
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Post by zachsmom on Oct 24, 2006 15:15:53 GMT -5
My son is currently on no meds. Geodon was a disaster. It seemed to activate him. He was awful. It could have been partly withdrawal from Abilify. We did go back to Abilify over the summer, but he started having the mouth tic (licking and rubbing until raw) again. Anything that seems to affect dopamine gives him tics. Dopamine is exactly what needs to be affected with him though as that is what helps him. Being off meds does not seem to effect his school work any - other than being very disorganized and not listening very well. I can tell a big difference (negative) in his social life though. Has anyone ever tried Lithium Orotate? I bought some yesterday and it did seem to calm him down some - he slept very well. I'm not sure what to do next. It seems all meds cause this mouth tic. He is going to be permanently scarred from it if it keeps on.
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Post by sonomaval on Oct 27, 2006 7:44:53 GMT -5
Hi all. My son is back home from the phospital. His current meds are tegratol xr 900 mg, geodon 120 mg, and cogentin 1 mg. Obviously it is too soon to comment on how he will do on this combination long term but so far I am encouraged. I have not seen any moodiness. His hostility and anger are both much improved. I can definitely see the antidepressant quality of the geodon as he seems much calmer (less agitated too) and happier. On the other hand, he is still adjusting to the dose and is at times having difficulty staying awake during the day. At night he complains of difficulty falling asleep/staying asleep. He also seems to be gaining weight rather alarmingly. I know neither of these meds are supposed to cause weight gain, but nonetheless he has gained 10 lbs in the last 10 days. Maybe it is inactivity, but I will be keeping a close eye on this as he gained nearly 50 lbs while on depakote/risperdal. Anybody have any suggestions ? As a 15 year old boy, it is difficult to convince him to monitor what he eats, especially since he has a lot of aversions to fruit and vegetables. If I let him, he would probably eat only junk food. Thanks to all who gave me advice during the past two weeks.
Valerie
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Post by Mayleng on Oct 27, 2006 9:26:40 GMT -5
Valerie, glad he is back and doing well. I have no expertise with these meds and the side effects of putting on weight. I am sure Ohmama will have some insights for you.
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Post by ohmama on Oct 27, 2006 12:37:02 GMT -5
Valerie, As far as the weight gain goes, I must say that I've heard this is a very common side effect with mostly all the anti-psychotics. We are using Seroquel and not having any problems in that area at all so some are more prone to this than others. Many have found by switching to Seroquel the carb cravings are kept under control. Another suggestion is to add the mood stabilizer Topamax to help control weight gain. This is prescribed in cases where there are eating disorders and greatly helps to control appetite while giving the benefit of mood control. You may want to discuss these meds with your psych. Please check out this site for information on taking Geodon and Tegretol together, the section "Possible food and drug interactions" may interest you. www.healthsquare.com/NEWRX/GEO1590.HTMThere is also information for those with heart problems using this med. I don't know if I'm confusing you with another member or not but thought you mentioned your son has heart problems?
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Post by ohmama on Nov 8, 2006 15:05:54 GMT -5
Pearl, How is your ds doing with the Lamictal now? Was it difficult to wean the Depakote? We are going to the psych tomorrow and I'm going to ask for a med change because his tremor is really bad on the Depakote and Lithium. I was thinking Lamictal would be a good choice. He is also showing signs of increased aggression that really scares me.
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Post by Mayleng on Nov 8, 2006 18:33:53 GMT -5
Ohmama I hope you get the aggression under control.
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Post by ohmama on Nov 8, 2006 18:42:41 GMT -5
Thanks, it's not too bad since I still have the Seroquel to rely on. I'm thinking of building a cage in the basement for emergency's, LOL! I'm sure Pearl will understand what I mean.
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Post by 2pearl on Nov 8, 2006 19:03:25 GMT -5
ohmama, we are still weaning the depakote, slowly slowly slowly while increasing the Lamictal by 12 mg per week. Currently DS is taking 250mg depakote and just reached 100mg Lamictal last night. He started Oct 11 I think- and we have finally begun to see very good results. The cravings are gone and he has actually starting jogging every evening. His overall mood is very good and he is absolutely not as dull. I just read depakote referred to somewhere as "depabloat" and that was truly the case for us. Now if only we could get those ADHD symptoms under control! Good luck if you decide to change!
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