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Sreamer
Member
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Posted: Wed Jul 16th, 2008 04:48 |
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MP for Children - Complications, alterations to protocol, etc.
Wondeirng what resources are available for parents of a children whom they suspect would benefit from MP. Is there a discussion thread available or a set of protocols that diff from those for adults?
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natalie17
Advocate
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Posted: Wed Jul 16th, 2008 07:22 |
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Hi Sreamer,
Welcome to the sister site of http://www.marshallprotocol.com. This is your personal thread, please ask any future questions in here.
I think the following links may help you;
Can children be treated with the Marshall Protocol?
CHILDREN & MP Information and Links
There is no specific discussion thread for parents of children on the MP but you can look for and contact (via PM) other members who's children are on the MP.
Also, some basic information incase you haven't had a chance to read it yet;
What is the Marshall Protocol?
The Marshall Protocol -- simple explanations
Phase One Guideline pdf file - first step to discuss with your child's Doctor.
Is the Marshall Protocol an Applicable Treatment for my Disease?
What is the basic definition of Th1 inflammation?
D-metabolites tests will help verify the Marshall Protocol is the right treatment for your child - even if s/he has not been classically diagnosed with one of the sub-categories.
Your child's Doctor may also want to try a therapeutic probe, see;
What is a therapeutic probe?
Take care,
Natalie 
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Sreamer
Member
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Posted: Wed Jul 16th, 2008 12:02 |
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| Natalie17: Many thanks for this information; several of these links I cannot access because I am not able to become a memeber of http://www.marshallprotocol.com (but I am of course a m emeber of curemyth1.org)...can you help direct me to these links?
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 135 |
| Status: |
Offline
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Posted: Wed Jul 16th, 2008 13:39 |
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| All the Information from the Children Links is included in the FAQ Can children be treated with the Marshall Protocol? Thanks, Barb ...
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tjsmom2
Member
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Posted: Tue Jul 22nd, 2008 01:56 |
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Hey Screamer, TJ's mom here - my 14year old was DX with CFIDS about a year and 1/2 ago - I don't know what you mean by "can't join the MP site" - TJ was Pre-MP when I joined, in fact still is due to his Doc's refusal to RX Benicar at this age, and insurance issues with the one Doc I found to be both qualified and sympathetic (and 7 hours away).
I am still learning this site's navigation and feel this would qualify as a "personal thread" but haven't figured out how to reply in that manner yet - so sorry if I screwed this up moderators, I will work on figuring it out.
Peace,
Kim
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I am Kim, TJ's mom - TJ was DX in 3/07 with CFIDS. Posts on the MP site from that year. TJ is PRE-MP, his doc will NOT prescribe Benicar at this point - TJ is 14 years old. DX vitaminD levels 25D=11. 1,25D=34. Latest levels 7/10/08 25D=12. 1.25D=44 ESR=9
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Julia
Advocate (on leave)
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Posted: Wed Jul 23rd, 2008 00:46 |
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Hi Kim,
It's fine to join in on someone else's personal thread if you feel you can help in some way If you want to start your own thread as well, just press 'new topic' at the top, and call it 'TJsMom's questions'.
When you joined the MP site membership was open to anyone. Now it's closed to new members, and even existing members who haven't already started a Progress Report in the Benicar forum have to apply to be accepted.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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tjsmom2
Member
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Posted: Wed Jul 23rd, 2008 07:49 |
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Thanks Julia!
A lot has changed! I'll post our latest as you suggested.
Peace,
Kim
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I am Kim, TJ's mom - TJ was DX in 3/07 with CFIDS. Posts on the MP site from that year. TJ is PRE-MP, his doc will NOT prescribe Benicar at this point - TJ is 14 years old. DX vitaminD levels 25D=11. 1,25D=34. Latest levels 7/10/08 25D=12. 1.25D=44 ESR=9
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Sreamer
Member
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Posted: Wed Jul 23rd, 2008 19:39 |
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TJsmom: I should have been more specific: I cannot establish a user name and password on marshallprotocol.com is what I meant, as they are having technology issues with too many users I believe. Sorry for the confusion.
Joyce Waterhouse suggested in her notes that there is more information regarding case histories and success rates on marshallprotocol.com but I am unable ot find it. Can you please direct me to whatever data is available that speaks to recovery rate percentages etc.? Many thanks in advance for all your work here.
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Sreamer
Member
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Posted: Wed Jul 23rd, 2008 22:42 |
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Natalie, Julia, Barb: I am going to post here a relatively short description of my son's condition in the hopes that you can tell me where else I might post it where other moderators, advocates, staff (including Dr. Marshall) might comment on it. As it stands, its been a 6 year journey with nearly no answers from the pediatric medical establishment (and we have seen the best all over the country). If there is somewhere I might post this so as to receive some feedback, I would certainly welcome the advice.
Jackson: age 7, suspected immune-mediated neurodegenerative disorder. Onset of symptoms around 12 -15 months of age, all normal developmental milestones met prior. Condition started as generalized weakness in lower extremities plus gastrointestinal distress. Progressed to significant hypotonia then on to nearly complete rigidity and inability to move, speak, or chew over a period of 18-24 months. Intermittent low grade fevers, ongoing extreme fatigue and inability to sleep, as well as a bout of pancreatitis that did not respond to total parental nutrition but did respond to the antifungal diflucan were noted. Severe, global developmental delay (physical rather than mental - sub 5% threshold for his age group in terms of weight/height). Subsequent infectious, metabolic, and neurological investigation revealed no abnormalities. Immunological tests below remain only consistent abnormal result. Background: Mother – who is highly allergic to penicillin, mistakenly received does of amoxicillin during labor and post labor suffered from anaphylaxis for several days and was administered high dose steroids for 6 weeks and continued to breast feed solely. Jackson’s condition became apparent after mother discontinued breastfeeding around 12 months of age.
Abnormal test/imaging results as/of March 2007
CSF Neopterin: 247 nM – high (ref range 7-65)
CSF Biopterin: 89nM – high (ref range 20-58)
C-Reactive Protein, quantitative: 1.34 – high
White blood count: 12.8 K/uL – high
Neutrophile count: 6.7 K/uL – high
Immune Complexes C1Q & RAJI: RAJI-equivalent CIC (ref range 0-15): 52.4 – high
Lymph tests:
%CD8: 40.9% - high (ref 16-30)
Absolute CD8: 2052 cells/uL – high (ref range 490-1300)
%CD3: 80.1% - high (ref range 56-75%)
Absolute CD3: 4019 cells/uL – high (ref range 1400-3700)
%Cd16/56: 3.6% – low (ref range 4-19%)
CD4/CD8 ratio: 0.94 – low (ref range 1.0-3.2)
CD3+/HLA-DR+: 33.2% - high (control 17.6%)
CD3+/CD25+: 9.0% - low (control 56.8%)
Hepatic function
AST, serum: 59 IU/L – high (ref range 22-44)
ALT, serum: 65 IU/L – high (ref range 12-34)
Brain CT scan & MRI in 2003: symmetric bilateral basal ganglia calcification, periventricular white matter calcification: stable as of 2007 upon subsequent MRI
Waiting on 25D and 1,25D
Normal serum results:
RBC
HGB
HCT
MCV
MCH
MCHC
HCT/HGB ratio
RDW
Platelet count
Mean platelet volume
Albumin
Total bilirubin
Direct bilirubin
Total protein
Alkaline phosphatase
ALB/GLOB ratio
Ferritin
Blood urea nitrogen
C3 level
C4 level
Calcium
ANA pattern X
Erythrocyte Sed rate
Phosporous
Glucose
Electrolytes
Creatinine
IgA serum level
IgG serum level
IgM serum level
Last edited on Thu Jul 24th, 2008 01:48 by Sreamer
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Julia
Advocate (on leave)
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Posted: Wed Jul 23rd, 2008 23:13 |
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Sreamer,
My heart goes out to you, parent to parent - there is nothing so hard as seeing your children suffer and not being able to find help for them.
This is the right place to get feedback, but even the medical team can't make a diagnosis for you. Dr Marshall is a research scientist who sometimes looks in here when he gets a moment. To find out if the MP would help your son, the first step is to find a doctor who's prepared to look into it - most of us have found our GPs more open-minded than specialists.
What do my lab tests mean?
Where can I find statistics about the Marshall Protocol?
What degree of healing is possible using the Marshall Protocol?
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Sreamer
Member
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Posted: Wed Jul 23rd, 2008 23:21 |
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| Thank you Julia, for those kind words. I understand completely about the diagnosis part - I am expressely not looking for that at all and understand the legal and medical reasons that is so. We have had plenty of ''diagnoses'' in the last 6 years and all of them were false, so I naturally take them with a fair dose of salt. I just wanted to post the profile in an attempt to receive feedback from the rest of the community on similarities, differences, ideas, etc. The positive feedback loop generated by a community as large and as dedicated as this one can provide enormous insights that the traditional medical system cannot. In parallel, we are already set up to see a doctor that has some experience with the protocol, as that appt nears, I am seeking to solicit as much feedback as possible from the community to prepare (after having spent many hours researching the biochemistry and available research already. Thanks again...
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Sreamer
Member
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Posted: Fri Aug 8th, 2008 21:57 |
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| Natalie, et al: my son is starting benicar soon and I wanted to ask if there is any issues with the type of food it is taken with or indeed if it is taken with food. Is the group's experience such that there are better foods (for kids) to take it with? Does it create any indigestion? Is there a routine that's best to follow before or after taking it? many thanks!
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natalie17
Advocate
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Posted: Sat Aug 9th, 2008 03:24 |
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Hi Sreamer,
I suggest you see Benicar dosage and schedules
Includes information about food, how to take it, when to take it.. etc.
From the experiences I have read as well as my own, it has not created indigestion. I was also advised by a pharmacist once to make sure I stay sitting upright for 30 seconds after taking any tablet if possible so I also do that.
If this doesn;t answer your question just let us know .
All the best,
Natalie
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Sreamer
Member
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Posted: Mon Aug 11th, 2008 20:58 |
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| Thanks Natalie - very helpful indeed. We started him on benicar Saturday and havn't noticed any change in his symptoms (10 mg per day every 4 hrs) yet. I presume the 1-2 weeks of benicar before minocycline is a hard and fast rule regardless of how he responds to Benicar? Also, should we have seen any change in his symptomology in this short a time frame or no? Thx so much!
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Sreamer
Member
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Posted: Tue Aug 12th, 2008 04:11 |
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| Natalie et al., one last quesiton. My Doctor has prescribed 25 mg of minocycline but my pharmacist is unable to find a source of 25 mg capsules etc. They can only find 50 mg tablets which I would have to cut in half. My question is: does anyone have a source for Mino that comes in a 25 mg form? Thx again...
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natalie17
Advocate
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Posted: Tue Aug 12th, 2008 11:16 |
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Sreamer,
You mentioned above your son is on 10mgs of Benicar every 4 hours.
To ensure this is the correct amount for your son, please review;
Phase One Guideline
Benicar dosage and schedules
and the FAQ Can children be treated with the Marshall Protocol?
....with your son's Doctor. Do not make any changes to your son's medication unless instructed to do so by your son's Doctor.
Also, about 25% of folks experience immediate symptomatic relief when they begin the Benicar blockade. About 25% feel no different. The other 50% will experience some adjustment symptoms.
If you are able to get mino tablets, you can split minocycline tablets using a pill splitter/cutter you should be able to get from your local chemist.
How do I divide the minocycline when the capsules only come in 50mg? CAUTION: When dividing capsules yourself: Please be sure to be measuring the dose carefully, shaking the FULL contents of the capsule right out to divide accurately..
Regards,
Natalie
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Sreamer
Member
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Posted: Tue Aug 12th, 2008 14:15 |
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| Thanks Natalie: that 10 mg dosage was prescribed after the Dr's consultation with Trevor and the physician's site (mp.com); I will not change of course unless instructed to do so by my son's physician. So cutting the minocycline is acceptable? Ok, great, I wasn't sure what others were doing and if there are no complications and/or negative repurcussions (mino being less effective for e.g.) associated with the cuting of the tablet, perfect.
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Julia
Advocate (on leave)
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Posted: Tue Aug 12th, 2008 15:04 |
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Sreamer,
Here in UK I can only get mino in 50mg tablets. I haven't found a pill cutter that works as well as a very sharp knife!
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Sreamer
Member
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Posted: Thu Aug 14th, 2008 17:38 |
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Finally received my son's Vitamin D results; would anyone care to interpret or is there another venue I should post them to?
1,25-dihydroxy: 51 pg/mL
25-hydroxy: 55 ng/mL
D3: 55 ng/mL
D2: <4 ng/mL
Sample was frozen, testing lab was Quest.
Thanks!
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
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Posted: Thu Aug 14th, 2008 18:10 |
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Sreamer,
Instructions for what to post, as well as the ideal place to post D metabolites for a response from nurse moderators is described here:
Help with Understanding D-metabolite tests
Moderators will help you understand the values returned from lab tests in this forum
Best to you and yours Sreamer--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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