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Post by tchermom on Sept 30, 2005 9:52:16 GMT -5
Hi! We started triptal in May and finally figured out a dose that would not make may dd so tired and nasty. She takes 75mg in the am and the same in the pm. I know this is low but seems to help even out the tantrums/odd behavior. The new problem is she is having more trouble in school. She is in spec. ed. already and her teacher said she seems to be in a fog and is concerned about her abilities. We have also noticed that she forgets simple things at home but she is not freaking out every minute. She is in new school with a lot of independent responsibility and has said she is overwhelmed. She did fine last year but was not on the trileptal-she just lost it everyday after school. Any thoughts would be really welcomed.
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Post by ohmama on Oct 4, 2005 10:06:01 GMT -5
If I remember correctly you are also giving your dd GABA? This along with the Trileptal will act to enhance the effects of the mood stabilizer (Trileptal) and I wonder if you are able to maintain the low dose of the Trileptal because of this? It would seem if the GABA is working and the Trileptal, that you have a need to stimulate the pre-frontal cortex. What you say about her being in a fog would indicate a need for this or maybe to cut back on your GABA dose? Have you considered adding a stimulant?
Please tell me again what her dx is.
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Post by tchermom on Oct 8, 2005 8:42:35 GMT -5
Oh mama,
Thanks so much for your reply. My dd was diagnosed with ring of fire from the Amen clinic in May. Since then we have been on a steady rollercoater ride. She is on 150mg. of trileptal and 2000 mg. of gaba, along with omegas, vit.e, three lac for candida, and a probiotic. She is extremly oppositional and had a tantrum/rage last weekend that would make anyone shutter. She also has a food sensitivity to milk on the high side and a moderate gluten sensitivity. (this from testing we did at the great plains lab.) She is a sweet kid underneath all this anger;she also has anxiety issues that are never addressed because of the glaring ODD/ADHD. We tried abilify for a while and she started picking at herself, eyelashes included. So with all that said..... Thanks for listening:)
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Post by ohmama on Oct 8, 2005 9:49:09 GMT -5
Now I see why stims would not be good for her. With ring of fire you are looking at the bipolar spectrum as am I. That's a hard one to figure for sure. I cannot address the med issues that are said to help (SSRI's or stims) with the ocd, adhd or anxiety issues either with my ring of fire boy.
We could not use Trileptal because of side effects but I know this is a good mood stabilizer for many. My sister is giving her bipolar boy this and it works well when she adds an anti-psychotic. Our stabilizer is Depakote and I found that to maintain the mood we had to increase it slowly as well as to add Seroquel, that is given on a regular basis (anti-psychotic) and to increase the Seroquel as a PRN.
Because those on the bipolar spectrum cycle, stabilization is an elusive word. To keep the rages/tantrums away you may want to consult your psych about using an anti-psychotic like Seroquel along with the Trileptal. If nothing else it could be used on a PRN basis. PRN is latin for Pro Re Nata meaning "as required". This is very necessary for us to maintain our sanity especially when he is cycling. Seroquel has been used as a stand alone mood stabilizer also and has a very low profile with side effects. I have heard that the side effects you mentioned are not uncommon with using Abilify.
Are you using magnesium and B6 with the GABA? These act as cofactors and are necessary for using any amino acid. Many children are sensitive to B6 and so use the P-5-P formula instead. I tried the GABA but found it did not work and so had to drop it. For us the mood stabilizer was able to do its job much better without this and it took away the balancing act of trying to figure out what was working and what was not.
Are you going to the Amen Clinic for follow up med management? I wish I could but we live so far away that it is a 7 hour ride one way so we use another psych for consultation and medications.
The rage is a sure sign that she is unstable. I hope you will look at the meds and be able to make adjustments. Have you checked out the "treatment guidelines" at the bipolar kids website? There is a wealth of information there on this subject.
(not intended as medical advice, only my experience with ring of fire)
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Post by tchermom on Oct 8, 2005 10:36:25 GMT -5
ohmama,
Thanks so much for all of your wonderful insight. We are still in close contact with our doct. from the Amen clinic for follow up but we live about 4 hours from the clinic so it is hard to go in person. We have a psych. here in Pa. and she is not so great so I am searching for yet another one. As for the b6 even as p5p my daughter went into a slow rage after 4 days on this-she also gets hyped on mag. I will check into the bp website as I do go there often. I always read the posts about empower/truehope as we did that for 2 years with tantrums/rages on a daily basis. I did e-mail our doc at amen about a med. change and am waiting to hear from him. Thanks so much:)
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Post by ohmama on Oct 8, 2005 10:42:12 GMT -5
Our kids sound alot alike. I have found this ring of fire to be very difficult for him as well as the whole family. Please let me know what the Clinic advises.
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Post by tchermom on Oct 8, 2005 18:20:16 GMT -5
You bet!
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Post by willoweezie on Mar 9, 2006 16:26:33 GMT -5
I know this is an old topic, I must have missed it the first time around.
tchermom, my dd has the same dx as your dd, and it seems you came to the same Amen Cinic we use in Reston, VA right? We have some of the same meds prescribed as well. I'm curious which doctor did your evaluation and if you have resolved any of the issues you mentioned in this thread.
I'm getting ready to go back to reevaluate meds. b.c. things have gotten pretty rough for us. I have a variety of concerns to work through, so I'm not sure just what we are going to try changing first, but I was curious how things turned out for you guys.
(sorry to ressurect an old thread, it just seems pretty relevant)
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Post by tchermom on Mar 14, 2006 7:36:49 GMT -5
Willoweezie-
So sorry but somehow I missed your post and just came back to gain some insight. If you want you can e-mail me at kimdestefano@comcast.net to talk about the Amen clinic. We are in a period of no tantrums right now but hyper and high anxiety behavior. Talk to you soon:)
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