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Cricket
Member in Phase 3
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Posted: Fri Jul 21st, 2006 10:38 |
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Our older daughter has just been diagnosed with ADD. We want to try ADD meds on her. Which of the ADD meds is ok to use while the child is on the MP?
Cricket
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Asthma(no attacks more than a year) RA IP, also insulin resistant(gone), light sensitivity; NoIr2%; light avoidance; phase 3 started April 2007.
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Jul 21st, 2006 12:04 |
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Cricket,
ADD (usually) results from Th1 disease. Take a look at young Matt's (resolving) symptoms and many will line up with your daughter's
It will probably be best if you stop the MP so that she can try the ADD meds. Have you spoken with some kids who are using those particular ADD meds, so as to make sure that they do what they are advertised to do?
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Fri Jul 21st, 2006 15:11 |
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Cricket,
I have some feelings for your dilemma. ADD is well defined in the public eye and quite popular as many children are currently on medications for this. I never put my children on the drugs even when some were certain they had ADD/ADHD. I tried alternative education methods instead, so the issue would not be so pronounced in school, and I also tried some dietary adjustment, and other environmental adjustments. All this before the MP was even known or available.
I have seen what happened to nephews after they were put on a variety of popular medications for ADD/ADHD (not all seemed to work the same, and there is continues to be a long period of watching and adjusting that is also troublesome). These kids are so drugged it is pitiful. There is a "breakthrough" period of time in the evenings when the boys are absolutely not sane. They are young now, but it is a time bomb from what I can see.
Before the ADD medications, as a mom, I'd try removing steroids ("D") from diet for a few months as well as glucose (sugars, high fructose corn syrup added to just about everything), and reduce the light hitting her eyes. You may have already done this. I don't know. You might have already tried MP medications, which seems to get to the root of the problem instead of just laying another medication on top ("treated" as opposed to "cure").
In any case, if popular ADD medications are the only solution after you have tried everything else, then you have done your best and that is that.
I can only say that I have really felt bad about some of the medical decisions I made for my kids on the best advice of doctors at the time. Looking back, I'd sure try the least invasive or a simple intervention first, even if it takes a little while longer. It could save you from feeling like you might have taken the big guns approach and side effects when a flyswatter could have done the job.
But that is just a perspective of a mother, and an aunt.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Cricket
Member in Phase 3
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Posted: Fri Jul 21st, 2006 16:33 |
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Hmmmm. I hate the idea of stopping the MP because I would rather cure her than control her symptoms.
I am just starting to research different ADD medications which is why I was asking if there are any meds that are compatable with the MP.
We just got her diagnosis yesterday, though we have been suspecting for years that this was the problem. In her case it was interesting because she is coping quite well. She still tests very well on achievement tests (thank goodness!). But the ADD is causing her problems with her school work. What to do..... I want to continue with the MP to get her cured while also arranging for her to be successful at school.
Cricket
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Asthma(no attacks more than a year) RA IP, also insulin resistant(gone), light sensitivity; NoIr2%; light avoidance; phase 3 started April 2007.
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Jul 21st, 2006 16:43 |
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Cricket
The aim or the key is to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines.... adjusting the MP meds may be helpful.. experience can be gained by trying.
see the FAQ My Herxheimer reaction is too strong. What should I do?
Medications adjustment option/s to discuss with your Dr:
Benicar: adjust dosage. may call Dr Marshall.
Minocycline: schedule can be extended if helpful. to assess symptoms level rising or falling..
for some: A single extra dose of mino 25mg may be enough to slow herx/symptoms ie improve 'presence' at any given time.
or Mino dose can be decreased (down as far as 25mg) and continued,
or lower dose more frequent Mino dosing used.
ie Mino 25mg Q6H or Q12H or daily.
see also non meds options and Ideas in FAQ How can I control my anxiety and depression?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Cricket
Member in Phase 3
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Posted: Fri Jul 21st, 2006 16:47 |
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Brigand is already on the MP. She is doing 25 mg of mino. We have limited her D as much as possible. Sugar, however, is a real problem. She is a sugar-a-holic and no matter how much I remove sugars from our household, she still finds some. *sigh*
As for medication for ADD, that is the recomendation of DR who did all the testing. Brigand does not have behavior issues, she just frequently goes absent. She has a terrible time with turning in homework assignments at school and has to be prompted to finish problems on tests. Fortunately she was able to pull it together enough to get through the year, but it took a lot of skin off our noses (John's, mine and hers), to get her through.
It was very touch and go. We didn't know until the very last week if she was going to make it.
Cricket
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Asthma(no attacks more than a year) RA IP, also insulin resistant(gone), light sensitivity; NoIr2%; light avoidance; phase 3 started April 2007.
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Jul 21st, 2006 16:47 |
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Cricket,
I lurched through the first half of my life "coping quite well." But I would never consider doing it that way again
ps: Benicar is a critical part of the MP. It both activates the immune system and it protects the body's organs, including the brain. It is not optional if a patient is symptomatic, especially if pre-diabetes is present. I know it is difficult for Doc to precribe Benicar to a child, unless you carefully set out the alternatives to him/her.
Last edited on Fri Jul 21st, 2006 16:51 by Dr Trevor Marshall
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Sat Jul 22nd, 2006 00:14 |
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Cricket,
How much sunlight is she getting at school ?
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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prugg21
Health Professional
| Joined: | Wed Mar 15th, 2006 |
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Posted: Sat Jul 22nd, 2006 08:41 |
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Cricket,
I absolutely ditto everything jrfoutin has said in her post. I also have a daughter diagnosed with ADHD at 4 yrs of age who's now 20 and doing very well going into her junior year in college with scholarships each year.
The medication route simply made her very drugged and even failed to work after only a few months, so we kept increasing the dose to have the medication effects be nothing again a few mos. later.
It was truly adding insult to injury as these kids are so easily hyperstimulated all the time, you are only adding another thing to the mix that their bodies will have to deal with and you end up creating more of exactly what you don't want.
IMO, the best treatment for them (in conjunction with MP) is decrease the amount of stimulation they get by removing environmental toxins (mold, perfumes, pesticides, formaldehyde, paints, etc), too much sugar, dyes, additives in foods and possibly checking for food allergies.
Also, creating a more relaxed lifestyle helps a lot. In my daughter's case, dairy was a HUGE trigger and after we discovered this, it changed our lives dramatically. Once we eliminated many triggers for extreme hyperstimulation we had a different child. In truth, I used to get compliments and other parents asking me what I did to make her so angelic and attentive while in school.
You may not have the severity of problem we had to begin with, but the potential your child will have if you truly try to address the problem will be far greater.
Many blessings,
Pam
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MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jul 22nd, 2006 12:49 |
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Pam, said "dairy was a huge trigger." Well, now you know why
Kids caught early seem to respond well enough to mino alone, with a phase 2 antibiotic taken intermittently. But multiple abx alone don't have enough power to deal with clinically symptomatic patients - as the infection gets worse Benicar becomes essential, and they need the full MP.
As we noted elsewhere, and our soon-to-be-released new guidlines portend, kids who are showing early symptoms will probably not suffer much from photosensitivity, and most will not even generate enough herxheimer for it to become an issue.
..Trevor..
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Cricket
Member in Phase 3
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Posted: Sat Jul 22nd, 2006 13:24 |
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Pam,
Dairy?
What we have found is that all our local milks have vitamin D added. There is a goat farm near us, so we buy goat milk with no vitamin D.
Could it be the D in dairy items that was the trigger?
Cricket
____________________
Asthma(no attacks more than a year) RA IP, also insulin resistant(gone), light sensitivity; NoIr2%; light avoidance; phase 3 started April 2007.
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Cricket
Member in Phase 3
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Posted: Sat Jul 22nd, 2006 13:29 |
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Dr. Marshall,
Are these new guidlines about children and sunlight on the web yet?
Does that mean that they are not producing vitamin D when they are in the sunlight? Or is it a benign form of D? I am confused....
Cricket
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Asthma(no attacks more than a year) RA IP, also insulin resistant(gone), light sensitivity; NoIr2%; light avoidance; phase 3 started April 2007.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jul 22nd, 2006 13:40 |
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Cricket,
Here is an extract from a draft of our new document, which is not finished yet.
"More seriously ill patients may develop photosensitivity as they heal, depending on the level of pathogens in the skin. Avoidance of direct, and indirect, sunlight may be necessary for these patients. Still other patients might need to protect their eyes from bright lights, in order to properly deal with this photosensitivity. This reduces neurological symptoms, probably due, inter alia, to the effect of 1,25-D production on the amygdala. This photosensitivity eases as the patients heal, typically becoming more manageable after 12-18 months. Some patients do not exhibit any significant photosensitivity during their recovery."
and from our new document on Photosensitivity:
"Up until now, our clinical experience has been with folks who are very ill indeed, and, as they heal, they almost always notice a high level of photosensitivity. This usually results in an intolerable increase in symptoms after venturing outdoors. Additionally, some of them are at high risk for a acute adverse events[eg-cardiac events]. Some prospective patients tell us they feel better when out-of-doors, but even these might develop significant photosensitivity as they heal."
Cricket, the issue is entirely one of how soon the disease process is diagnosed, the earlier the better. Most of us allowed the pathogens to multiply for decades, and have suffered as they were killed, whereas many kids will often be carrying a much lighter load, and not suffer much as the bacteria are being killed.
D is still produced in the skin, but healthy skin does not produce too much of it, as diseased skin does, and also produces a different mix of the 25-D and 1,25-D metabolities (since inflammatory cytokines enhance the conversion from 25-D to 1,25-D).
Last edited on Sat Jul 22nd, 2006 13:43 by Dr Trevor Marshall
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Cricket
Member in Phase 3
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Posted: Sat Jul 22nd, 2006 14:13 |
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Thank you for the explaination of sunlight and children. I had noticed that my girls do not seem to experience the same negative effects of sunlight that John and I do. We still try to keep them out of the sun.
These are the medications that are commonly used for ADD:
Medications for ADD / ADHD
Stimulant medication is a common treatment for individuals with ADD/ADHD.
Adderall , Clonidine , Ritalin , Concerta , Strattera , Cylert , Wellbutrin , Dexedrine .
All of them are stimulants with the exception of :
Clonidine
Clonidine, also known as Catapress, is often prescribed in adults for high blood pressure. It is also sometimes prescribed for ADHD.
Would it be possible to substitute benicar for clonidine and obtain the same results (decrease in symptoms of ADD)? Does benicar work in the same way as clonidine?
Cricket
Last edited on Sat Jul 22nd, 2006 14:22 by Cricket
____________________
Asthma(no attacks more than a year) RA IP, also insulin resistant(gone), light sensitivity; NoIr2%; light avoidance; phase 3 started April 2007.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jul 22nd, 2006 14:31 |
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Cricket,
ADD is an idiopathic disease. That means that modern medicine does not know the cause, or the cure.
But we have discovered the cause - it is due to Th1 immune disease, caused by an accumulation intra-phagocytic pathogens.
None of the drugs you mentioned do anything to kill the pathogens. Pam told you (above) that all they do is slow down cognitive processes to try and bring the kid back to "normal" so that they can grow up "normally," have children, and then relapse into the diseases of middle and old-age :- RA, CFS, Sarcoidosis or whatever...
Please take a step back and revisit your thought processes...
..Trevor..
Last edited on Sat Jul 22nd, 2006 14:39 by Dr Trevor Marshall
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