son still struggling, lots of neuro evals and such, in the meantime in order to attempt to get a leg up on basic functioning until the encephalopathy quells further -- has been prescribed provigil for severe processing disorder.
provigil helped the processing disorder, but caused general ill feeling and agitation.
we are to try concerta next. my understanding is provigil was less likely to cause agitation than the "stimulants", but i also understand response is highly individualized to these types of meds.
any thoughts, ideas, tips appreciated.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Tracy9
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Member # 7521
posted
Everyone is different. These meds cause highly individualized reactions. I take Adderall and it works very well for me. However it gave my older son severe anxiety and he couldn't tolerate it at all.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
yes that's right, thanks tracy. my son has had numerous atypical adverse reactions to boot.
still, it helps me to hear about other individuals' reactions, taking into account high variability. it's always extremely tricky with him and any new meds.
thanks for the info on your experiences.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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adamm
Unregistered
posted
Aren't stimulants like concerta addictive?
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obviously there is a concern in that area as well. we are using an excellent LL psychiatrist.
unfortunately, these meds are necessary at this time for son to reach basic functioning levels required to be able to manage in day to day living, and following plans treating the brain disorder.
not many choices for us at the moment.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
provigil is my miracle drug but everyone is differnt....
you can buy it online w/o a rx for 1$ pill
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Mo, I wonder if part of the problem is that it's so confusing to have the way you process information changed for you -- even if it changes you to a more "normal" state.
There was a time that anything that did not knock me unconcious agitated me.
Having said that -- Provigil does help me; when I'm very tired and fog-brained it gives me a boost and clears my thinking. But I can only take it at low doses for about 4 days before I have to stop it, otherwise I get very hyped up and start talking at a million words a minute.
I don't know if you're supposed to stop and start it at will, and it would probably be inappropriate for someone in your son's situation, but that's what has worked for me.
Best of luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
concerta helped focus and attention, stamina, but caused his already bad insomnia to persist until 5 or 6am.. that's with sleep meds.
so now to try the shorter acting form of concerta, which is ritalin LA.
also pursuing neurofeedback, obviously hoping such technique may work to help alleviate the need for all of these meds.
mo
[ 02-07-2009, 02:18 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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GOTU KOLA ?
-
Gotu Kola (not a cola) can calm the nervous system while also helping with alertness. It helps give a sense of well-being without feeling ``wired'' or ``hungover''.
Of everything I've used over the years (included pharmaceuticals and supplements), I cannot say enough good about the wonderful effects I've seen - in many ways - from Gotu Kola.
GOTU KOLA -- An Under-Appreciated Herb: Multifaceted Benefits on Microcirculation for Cardiovascular and Cognitive Health -- By Linda Fugate, PhD
The best nutrition in the world will not do anyone any good if it doesn't reach our tissues. The gatekeeper to tissues is the microcirculatory system, which includes blood vessels smaller than 0.1 mm in diameter. The health of the microcirculatory system is now recognized as critical to the total health of the individual. (1)
Gotu Kola's Effect on the Circulatory System . . .
From Wound Healing to Brain Health . . .
. . .
Conclusion
. . .
Gotu Kola's primary action is enhancement of the health of the circulatory system. Because circulation is critical to the health of the entire body, Gotu Kola offers benefits in a variety of conditions.
The antioxidant and collagen supportive functions of Gotu Kola are particularly important in enhancing healing of damaged tissues.
Gotu Kola is bitter and astringent in taste and cooling in action. It is a brain and memory tonic, and an anti-poison, and very useful for wound and skin healing.
. . .
TAM doctors use it as a brain and memory tonic, and have found it especially useful in children.
In Nepal, during the ceremony for the first day of spring, gotu kola leaf is given to schoolchildren to help them in their studies by improving memory and concentration.
It is very safe and extremely effective. TAM doctors also use it to cleanse the system of toxins and reduce inflammation. TCM doctors use gotu kola to clear up boils and toxic fevers. . .
The primary effects of gotu kola include both wound healing and improvement of mental clarity and emotional balance. . . .
Research Highlights
. . .
These studies illustrate the plant's numerous stimulating effects on the healing processes of the skin and connective tissue.
* The Indian Central Council for Research on Ayurveda and Siddha, citing more than ten pharmacological and animal studies of gotu kola, also found evidence of the following characteristics:
CNS depressant [calming without causing drowiness],
memory enhancer,
anti-convulsant,
antispasmodic,
behavior and intelligence enhancer,
and blood sugar regulator (Pandley et al., eds, 1996).
- Full chapter at link above.
=================
This is the brand that has always worked well for me. I use it to help wake up by brain without agitation but also to help keep my brain calm enough to not rocket into a seizure with the slightest startle.
Gotu Kola never wires me - it never sedates me. No problems with regular day/sleep routines.
I also rely on magnesium but see a clear benefit with using the Gotu Kola.
looking into it. which one of the eclectic institute formulas do you use?
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Mo,
One drug that has helped me in the past was Strattera, which is an adult ADD med.
Some doctors will try to start you on too high of a dosage in the beginning, and from what I have heard, that is why the people that don't like it tend to not like the drug--too much too soon.
I would insist on starting at 18mg daily (the lowest dose available), and since the drug takes awhile to work if I remember correctly, don't "up" it for awhile, like a month.
What this drug helped me with most was reading.
It did give me lighter sleep and difficulty falling asleep, and also headaches, but those wear off after a month or so, so if Strattera is a drug that helps, it could be worth waiting through that stuff, because it does fade.
This drug may not be appropriate for your son, or you could have already considered it, but I'm just bringing it up in case you haven't, and who knows, right?
Best of luck to you both!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Mo, for your son, I would suggest starting with the straight Gotu Kola. Eclectic has one formula with Gingko added, but Gingko wires me (jittery, more startles) and I would not suggest that for your son.
I also use some other herbs from that mfg, but as for the Gotu Kola, I think it's best to start with a single herb rather than a formula for that one.
You can break the capsule open and mix and water or juice to drink - for smaller dose to begin if you like. Or use the glycerite drops.
The link for the mfg would be coming from the Pacific Coast. I'll search for a place closer to you where you can order it. Vitacost only has the Gingko-combination or other brands. I can't say about any other brands. I would only use organic.
Besides the Eclectic site (in Oregon), here is one supplier for that brand of Gotu Kola - but I can't figure out their location and they are closed for the weekend:
Note that Herb Pharm does make a Gotu Kola tincture with organic alcohol but, for a child, I think the glycerite is better than alcohol tincture. The beauty with this is that you can start with just a tiny bit -
Contains: vegetable glycerine, distilled water & Gotu Kola extractives.
CONTAINS NO ALCOHOL
Description: We prepare our Gotu Kola Glycerite from fresh (undried) whole Centella asiatica plants (with roots) which are Certified Organically Grown on our own farm without the use of chemical fertilizers, pesticides or herbicides 1.
To assure optimal extraction of Gotu Kola's saponins and other bioactive compounds, the plants are hand-harvested at their optimal potency, are carefully shade-dried, and are then thoroughly extracted.
Oh, Gotu Kola will not just "drop" your son. When it gets low in the system it is not a sharp flip to the far side of fun. Of course, I do not have the same thing as your son but, for me, I just notice that I'm dragging or more jumpy to sounds - and that I may have forgotten to take it.
With the glycerite form, it gets into the system more quickly and with the capsules, if dosing is kept up I never feel way up or way down.
-
[ 02-07-2009, 05:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I'm also thankful for your info.!!! I am now taking Provigil, but I've been on it for 4 years now and it really doesn't work well anymore.
MO----My son has had several negative reactions to meds. for conentrationg. After trying about 5 different ones, Metadate is the only one that works for him. The downfall, (and I really think this is the case with most of these meds.), is the medication wheres off about 6pm, (he takes it at 6:30am). When it wheres off, he does get a little grumpy.
I think that when any type of stimulate is wearing off, it causes some irratablity. And there are some that can cause horrible reactions!! So just watch him!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
thank you for searching that out keebler, i am looking into it.
thanks hoosiers, strattera was mentioned by LLpsychiatrist as well, but i don't know allot about these meds. looking for something to get through the tough times and into more effective treatments for his difficult to manage brain symptoms.
scared, same here, we've been through lots of scary reactions, and i spent some time today reading about the "crash" on these meds. i will be watching carefully.
ugh. mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Glad to hear that this may help.
The links below might also help shine a light.
One of the solutions mentioned (by Tillotson) for calming is Seven Forests Acorus Tablets. A search will bring up sources and the ITM link in the article takes you right to a research article about that.
I have taken many of the things suggested and, while no longer a child and not (exactly) ADD, I have a very sensitive system and would be glad to share my experiences with certain things if that helps.
===========================
From: The One Earth Herbal Sourcebook (Tillotson, et.al.)
Chinese Herbal Treatment for Attention Deficit Disorder
Attention Deficit Disorder (ADD) is a broad syndrome that may include hyperkinetic syndrome, hyperactivity, and Attention Deficit Hyperactivity Disorder (ADHD).
=====================
Acorus was mentioned in an link above as being calming. Here is more on that:
While they do sell supplements, for over 15 years, I have been impressed with the quality of research in their articles. They are extremely well thought out and they always back up their work with many good medical citations.
---
I also know of a brilliant ND in Stamford, CT - if that helps. She is excellent with children.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
You are very welcome Mo.
Check out that link I posted too....the guy that authored that page does a really good job of describing what Strattera does and what you should watch out for. I found that page to be very useful and infomative.
If you go towards the bottom, he describes how it helped one of his friends (who he calls "Mouse") when traditional ADD meds weren't enough for her.
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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i see i've got some reading to do here, and will get back.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
i picked up the herb pharm, tincture, so we can start with a tiny bit.
gotu kola does not have any known contradictions with other meds, which is good, especially in my son's case.
plus, like you said keebler, with the tincture you can start slow and control dose levels more precisely.
son is a teen, so he must be behind his own treatments. i'm suggesting that he sees if gotu cola has a good effect, it may reduce his need for the other "brain meds" over time. our great LL docs are very much proponents of the prescription drugs for assistance.
at this time, son wants to go clinical and is in serious need of help especially with processing and focus, so is on the ritalin LA. he says it helps, i don't notice much help - and the insomnia on it is worse as well. he is also on namenda, which is neuroprotective and not as harsh. that doesn't concern me as much.
ugh.
mo
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