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Post by ohmama on Dec 16, 2003 20:06:46 GMT -5
I have recently started my "ring of fire" boy on 300mg Trileptal and would like to know if anyone else is familiar with this med? It is used most often for seizures/epilepsy and is an anticonvulsant to cool down the temporal lobes (tantrums, and unstable moods,etc.)
Also, has anyone else been dx with "ring of fire"? Child or adult, it would be good to find out what is helping you (or your child).
All comments appreciated.
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Post by swmom on Dec 16, 2003 20:47:12 GMT -5
Can you describe "ring of fire" ? What are the symptoms?
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Post by ohmama on Dec 16, 2003 21:44:24 GMT -5
Ring of Fire is a term used by Dr. Amen to describe one of the 6 types of ADHD. I took my son to the clinic in Fairfield, Ca. and had a SPECT brain scan there. With ring of fire the symptoms are severe and resemble bipolar disorder. It includes all types of ADHD rolled into one. This includes bipolar symptoms and adhd with anxiety disorders that affect all parts of the brain not just the prefrontal cortex as is common with add/adhd alone. If you are not familiar with Dr. Amen you may want to check out his website www.brainplace.com there is a brain system checklist where you can take a test. The results will show you probable areas of the brain that are matched by your symptoms. This gives a better dx than just lumping everything together and calling it ADD/ADHD. By identifying the brain areas causing problems you can then zero in on the correct family of meds to be used to get things under control, etc. Far from the practice of "one size fits all" if you get what I mean. |
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Post by ohmama on Dec 16, 2003 22:37:04 GMT -5
Hello Madison,
Good to see you are here too. How's that diet going? I lost those last ugly 10 lbs and feel great now. More energy!
You're right, natural is better if it works. Wish it did for us. I'm still giving the omega 3 but the doctor said to give more. I'm giving 4grams now (4,000mg) a day along with vitamins,diet, etc. All this with the med and it seems to be getting better, but did not work well enough without the med. I'm sure it is helping to keep him on a lower dose of med and no mentionable side effects so far.
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lisle
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Post by lisle on Dec 17, 2003 0:17:48 GMT -5
Hi, Oh Mama:
Our dr. said Trileptal works best in kids when it is used along with some other med. Like two mood stab. together or an Atypical with it. However, I had asked him about it because it was highly recommended by the bipolar kids author, who said her husband (the dr.of the two) was having a lot of success with it. We never tried it. Had you tried any other meds before this and since the scan? When you say you are using 4 gr. of the omegas. how much total dha and epa are you using? Are you referring to the 1000mg capsules and saying you use four of them? If so, we do too. If you have the depression, one gram of the EPA helps as much as more does. There was a study that replicated Dr. Stoll's and showed that. I saw it on Alternative Health News newsletter. Did you try inositol--don't recall? So are you still using the GABA? Sorry for all the q's but glad to hear from you. How long have you been using the Trileptal? Any other meds? How is your boy taking all these changes? My son can be pretty resistant at times.
lisle
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Post by ohmama on Dec 17, 2003 1:16:46 GMT -5
Hello lisle,
I am tempted to say the "other" mood stablizer we are using is the omega 3 but I'm very new to the med thing so can't imagine what the future holds and if this would be an accurate statement. I loved Dr. Stoll's book "The Omega 3 Connection" but it's been a while since I read it.
This is the first med since the scan. I'm not using GABA anymore. I don't think it would be wise to use along with the Trileptal as I don't know about mixing it with meds. I have heard there is a problem with the GABA crossing the blood/brain barrier? If this is true it would explain why the GABA alone was not effective.
The omega 3 I'm using is pharmaceutical grade and molecularly distilled by Nordic Naturals, called Nordic Naturals DHA. The total DHA and EPA is given in 12 soft gels a day and equals 3,000mg DHA and 900mg EPA, there are also 540mg other unspecified omega 3 besides this with no saturated fat, and of course vitamin E (mixed tocopherols). I know most people use a higher EPA than DHA but I am convinced that with us the higher DHA is what is working best.
I know I have much to learn about meds and hope others will respond with information that will be helpful. My son has been on the Trileptal for 2 weeks now. He is doing ok. I'm not seeing anything dramatic but at least most of the tantrums have stopped. I'm not sure what to expect or if I can count on this being the answer. Time will tell, it is hard to be patient.
Please tell me about your son.... his age, what meds you are giving, is he bipolar? Or ring of fire? What is his dx, etc... I also have many questions and hope you don't mind?
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Post by Honeysmom on Dec 17, 2003 10:34:49 GMT -5
Hi, I am just wondering of the omega's come in a drop form. I am supposed to be giving them to Honey, but I can't get the kid to take a pill. He is only four and has a AWFUL gag reflex. I add as much tuna and fatty fish to his diet as possible, but I am not sure if it is enough. He eats at least 3 ozs of tuna a day. Some grilled, and some in the can. (He LOVES that stuff, he thinks it is a treat)
He also is supposed to be a vitimans, but he can taste those when I mix them in, so far I have only tricked him with Ovaltine. I guess it is better than nothing at all. He won't even take a Flintsonte. I love those. That is what my doc's gave me for prenatals b/c I get really really sick on "real" vitimans. Took 2 a day.
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Post by ohmama on Dec 17, 2003 11:51:37 GMT -5
Honeysmom, Have you tried coromega? It is a flavored pudding like substance of omega 3? I don't know if the offer is still available but they may send you a free sample see www.coromega.com for information on this. I know there are other manufacturers that do have a liquid. We don't use liquid so I'm not up on who it is. The Nordic Naturals we take has a strawberry taste and are of a reasonable size for swallowing. They may even have a liquid if I remember correctly. See www.nordicnaturals.com to check this out. This is so essential for good brain health, the whole family should be taking it. I hope you will be able to get started with some. Don't forget about yourself. We are all under stress. I don't know what I would do without it. |
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lisle
Full Member
Posts: 142
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Post by lisle on Dec 19, 2003 0:53:44 GMT -5
Hi, Oh Mama:
I guess that's right--the other mood stab. is the omegas. Hadn't thought of that. But that's not how the shrink meant it, I know. He was talking meds. I looked into the Nordic Naturals also; they are very good. I have been thinking exactly what you have thought, that the DHA might be more suited to our kids who are more manic than depressed. I have to compare my amounts and let you know. We are using more EPA and less DHA than you, and I wonder about the efficacy of that. We are using MaxEPA, 4 a day and they are pretty big.
My son is not technically bipolar. I am fairly sure a scan would turn up ring of fire, though. He has had various diagnoses. He is definitely very severely adhd, very bright, and possibly bipolar. He is not at all psychotic.
He has no thought disorder. He also has a big difference on his I.Q. between verbal (very high)and performance (low). He is almost 12 and in sixth grade, struggling with just about everything because of his hyperactivity and misplaced wit. He is constantly in trouble. He rushes through all work and is very disorganized. He loses things daily. He is very stubborn about receiving help from anyone and is a little too much of a know it all. He is too prideful to accept help. Tutors? He quickly alienates them. Peers get pretty annoyed with him too. Life is very difficult for us all.
He has had fewer explosive episodes over the past two years and that is mostly attributable to our reading The Explosive Child (though I often don't do what I should)and the supplements he's been prescribed by the Pfeiffer Treatment Center. He was found to have a zinc and b-6 deficiency, an absorption problem (with the vits definitely), and a toxic metals problem, as well as very high histamine. So he is taking b-6, methionine, E, C, cod liver oil, manganese,cal/mag, and TMG. In the evening he gets zinc (90 mg.!)with the others (no cod liver oil though). I added the omegas after reading Stoll's books and follow-up studies on the net. I spoke with the psychiatrist who consults for Pfeiffer to get advice. He actually advised against the Omegabrites, which I was considering a switch to, when I told him they had a lot more EPA. The EPA is really for depression. Anyway, I hope this info fills you in. Feel free to ask more.
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Post by ohmama on Dec 19, 2003 12:35:12 GMT -5
Lisle,
Your sons symptoms sound very similar to my boy. Although each child is unique it is comforting to put our heads together and see what we can come up with.
As far as the high hystamine goes ... it is brought under control with 800mcg folic acid, 50mg B6, 1200mcg B12, and at least 250mg of Choline (from Lecithin). This always seems to be a problem with agressive/tantrum behavior among other things.
When we used these things together there was much improvement. Both my boys (twins) had a big problem in this area.
Have you considered going to the Amen Clinic for the SPECT scans? I would recommend it to anyone contemplating using meds. I was not ready to turn my child over to a doctor who uses checklists to find a complete dx. Sure don't like the idea of experimenting on my childs brain that way. I know it takes some time to find the right med but these scans give you the advantage of seeing what you are dealing with. A big advantage when you are talking about something so complex as a childs brain. They also deal in natural alternatives and often can combine the two in a treatment plan.
I know by using natural alternatives under strict supervision as you are that you are doing the very best for your son. Your love and patience must be very great. I only considered the med after finding everything else was not enough. I don't know if it is the answer or not but have to try.
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Post by geewiznit on Dec 19, 2003 15:38:23 GMT -5
lisle--I'm sure the last thing you feel you need is another diagnosis, buy has anyone ever suggested Non Verbal Learning Disability, given the disparity between his performance and verbal IQ's (the key indicator of this disability)? My 12-year-old daughter has both ADHD and NVLD (along with mild OCD and anxiety just for good measure!). The NVLD diagnosis is not one that is treatable medically, but it does explain many behaviors and can be addressed educationally. For example, kids with NVLD are pretty oblivious to nonverbal cues from peers and others, and this adds to the difficulties with relationships they already have from the ADHD. They actually have to be taught to recognize and react to nonverbal cues (e.g, recognizing when someone is bored with their chatter, and stopping, or recognizing that someone is deep in thought, and not interrupting). Of course NLVD also has a big impact in school, especiallly as work gets more sophisticated--note taking, seeing the forest for the trees, synthesizing information, etc. are all hard for these kids, despite their dazzling verbal skills and excellent memories. Well, I've gone on too long, but having experienced the particularly tricky combo of NVLD and ADHD, I thought I'd throw in my two cents!
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