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  #1  
Unread 01-19-2010, 11:29 PM
LH123 LH123 is offline
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Default Update on 12 Yr. Old Diagnosed w/ Crohn's

Hi,

Thought I would give an update on my son who was diagnosed in May 2009. Spent the summer trying to get him to gain weight using two Absorb Plus shakes a day and working with his diet. I weaned him off Asacol so he was drug free by July. However, due to the diagnosis of latent TB he was and is taking Isonazid once a day for 9 months. Over the course of the summer and thru September, he did not gain in weight or height. My father was also very ill at this time and I was desperate for a solution not being able to devote my entire attention to my son. My husband and I decided to put him on Methotrexate in late September(a compromise with our Dr. from Remicaid ). Since then he has gained about 4 pounds and 1 1/2 inches. Concurrently, I have kept up with all the probiotics, liquid iron and other supplements, watching the carbs and sugars. I am not happy he is on this powerful drug, but am thankful he is growing. My father passed away in December so I am hoping to turn my attention back to my son.

Our GI doctor, one of the "best in the world" supposedly, is vehemently against our weaning him from Methotrexate at the moment. In addition she wants to put a video capsule down him to "see what is going on". I have read enough to know that this is very disruptive to the gut flora. Right? What do you think? My feeling is that he is improving so much why do we need that?

My other question is how to wean him from Methotrexate and when? I am hesitant to disrupt the process right now as he is growing and hadn't grown for about two years. He was severely malnourished as he has the "clubbed" fingertips and toes. He is beginning to absorb.

I would appreciate your comments.

Lisa
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  #2  
Unread 01-20-2010, 05:17 PM
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Silvio Silvio is offline
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Hi Lisa,

I am very glad your son is somehow responding to the medication, it could be Isoniazid and/or Methotrexate, you can´t know for sure.
I would like to know how he is doing, which are his symptoms today, how are his latest blood tests, etc.

The purpose of video capsule is to actually confirm something the GI already knows, your son has Crohn disease. You should ask her if whatever she might find with this study would radically change the treatment or prognosis of his ailment, if not, it is just mere medical curiosity.

The hardest thing in your case is not when to wean him from methotrexate but how to deal with the practitioner that is prescribing the use of it, it is not possible not to have a physician to consult with, to really belive he/she is doing for our children the same they would honestly do for their own. So here is some information that could help you discuss with her if this is the best choice to treat your son, and explore the possibility of adopting Jini´s protocols in full to give that gut a chance to start “healing”.

Methotrexate

Is an antimetabolite anticancer drug that has been found to have beneficial effects in a number of chronic inflammatory diseases. The mechanism of action is still obscure, there is not a consensus about the optimal dosage for inflammatory diseases. There are a number of medical studies showing controversial results.
The long term use of methotrexate for chronic inflammatory diseases has the potential of very serious toxicity. The adverse effects can be considered in three categories
1.Predictable dose-related anti-proliferative effects on bone marrow
2.Gut epithelia (ulceration and inflammation), hair follicules (alopecia) and pneumonitis (lung damage)
3.Hepatic damage due to cumulative effects of chronic exposure (liver fibrosis).

Bottom line, this drug has shown clinical improvement in not more than 60% of cases, with more than 10% dropout from treatment because of intense side effects.
Close clinical supervision of the patients using this drug is of paramount importance, full blood count should be made every two weeks for 1-2 months and every 2-3 months for the duration of treatment are advisable to monitor for bone marrow depression.

A great deal of care should be taken to monitor for infections due to a decrease in white cell production.

Hepatic fibrosis is one of the most feared long-term side-effects associated with methrotexate. Guidelines for monitoring by the American College of
Rheumatology include liver blood tests every 4-8 weeks and adjusting dose accordingly.

So think of this, your aim here is to HEAL the gut, you are giving him a drug that provokes ulcers and damage to the same organ you are trying to repair. That is why I started this note asking you about how was he doing, which are his symptoms right now.

I hope this helps you deal with this tough moment, I have to say I was in the same predicament with my daughter not long ago.

Warm regards

Dr. Najt
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Dr. Silvio Najt, MD - has specializations in Cardiology and Emergency Medicine and has practiced in both the U.S. and Argentina. Dr. Najt healed his daughter's ulcerative colitis using Jini Patel Thompson's protocols. Since then, he has trained directly with Jini and now treats patients with digestive disorders in his private clinic in Buenos Aires, using holistic protocols.
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  #3  
Unread 04-29-2010, 10:42 PM
LH123 LH123 is offline
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Default Lab Reports

Hi Dr. Silvio,

I am finally getting back to you with my son's lab reports. These were taken just a couple of weeks ago.

C-Reactive Protein 4.18
Sed Rate 25
Polys 43
Lymphocyte 41
Monocytes 5
Eosinophil 9
Basophil 2
ABS Poly 3.6
ABS Band 0.0
ABS Mono .4
ABS Lymph 3.4
ABS EOS 0.8
ABS Baso 0.2
RBC Morphology Normal
WBC Morphology Normal
Lipase 11
Protein Total 6.1
Albumin 3.7

WBC Count 8.4
RBC Count 4.73
Hemoglobin 12.9
Hematocrit 39.3
MCV 83
MCH 27.2
MCHC 32.7
RBC Distribution 16.6
Platelet Count 490
Mean Platelet Volume 6.3

Amalase <50

Total Iron 64
Iron Binding 244
%Saturation 26

The doctor was happy with his iron levels as back in september they were 16. Thus, he appears to be absorbing better. She was only concerned with a spike in his CRP Rate. Back in December it was 1.8 and now is 4.18. I think just from the way he is feeling, he may be experiencing a flare in the last week or so. Maybe this is indicative of that.

My hearts desire is to get him off Methotrexate, but the reality is until he owns this disease, I'm not sure it is possible. HE is still very immature. He will eat some of the healthy foods I present him, but still loves carbs - pizza, pancakes, toast etc and refuses to give them up.

I would appreciate your comments.

Lisa
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  #4  
Unread 04-30-2010, 12:09 AM
LH123 LH123 is offline
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Default Flare or Die-off?

Hi Jini & Nicole,

Just wanted to get your input on what has happened in the last two weeks. My 12 year old was diagnosed one year ago and has been on Methotrexate since September with good results. He has grown 1 1/2 inches and gained about 5 pounds. He has hadno symptoms of Crohn's since the meds were started in September. He has been on an antibiotic for TB (Isinozid) since July. I have supplemented him with Natren probiotics, all three strains - 3 times a day, also since July. His dose of antibiotics was finished about 2 weeks ago. Since then he has been having symptoms of either a flare or die-off. He is naseous, cramps a little and complains of a headache.

In re-reading your info on probiotics this sounds like it could be a die off of yeast. What I'm wondering is since he was onthe antibiotic the probiotics were not able to colonize in his gut. Is it possible that the symptoms he is feeling may be due to the probiotics finally being able to do thier magic in his gut?

I hesitate to call his doctor as she will jump to the conclusion that the Methotrexate stopped working and she will be pushing for Remicaid again. One reason his symptoms may be due to a flare is that his C-Reactive Protein Rate increased quite a bit from his last lab. Two weeks ago this rate was a 4.18 and in December it was on 1.80. This is a marker our doctor uses that shows inflammation. His Sed Rate however has remained the same. The doctor told us the difference between the two rates is the Sed Rate is over a long period of time and the CRP measures inflammation at that moment in time.

I'd appreciate your opinions. Either way, would it hurt to give him your Probiotic Retention Enema. Have people had success giving this to children? I don't want to put him thru it unless I can reap some measure of success.

Thanks so much for your input.

Lisa
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  #5  
Unread 04-30-2010, 02:07 AM
LH123 LH123 is offline
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Default Stop Probiotics to Test Symptoms?

Hi Again,

After writing the prior post, I had a brilliant idea . What if I stop the probiotic for a couple of days and see if his symptoms go away? If they do, then I would know it was the probiotic, if not it's probably a flare? What do you think about this approach?

If it is the probiotic, then it would cause him more pain to give him the retention enema, right?

I hate to see him not feeling well and he is resistant to eating. I just don't want to lose the ground we have gained so I'm trying to get a handle on this quickly.

Another question...can Methotrexate lose its affect on the body after just 7 1/2 months? Is this common?

Thanks!

Lisa
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  #6  
Unread 05-08-2010, 05:49 PM
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Hi Lisa,

Sorry for the Forum interruption - our sites were hacked and a virus inserted which corrupted a lot of things. It is finally fixed and I have hired a security specialist in case this ever happens again.

Anyway, it's probably too late for your question now, but yes, you can always test a supplement's effects by stopping it for a week or so. And yes, if it is the die-off effect (Herxheimer reaction), then more probiotics via an enema would increase the die-off of pathogens and therefore the symptoms too.

Please keep in mind though, that whilst your son is on ANY drugs, natural healing methods will not be very effective. It may be a good idea to think hard about your pathway here and either discontinue all drugs, OR realize that whilst he is on drugs, there will be no long-term healing, just a bit of help provided by the natural treatments. As Dr. Najt wrote you at the beginning about methotrexate:

Quote:
So think of this, your aim here is to HEAL the gut, you are giving him a drug that provokes ulcers and damage to the same organ you are trying to repair.
I say this so that you realize the consequences of your decisions and hopefully don't get frustrated and say "This holistic healing stuff doesn't work!" Please be absolutely clear, that while he is on drugs, the foundational healing cannot begin. Primarily, the supplements are helping to limit the damage being done by the drugs - but by how much or how little, we don't know.

best,
Jini
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Jini Patel Thompson is an internationally recognized expert on natural healing methods for digestive diseases. Her books have sold into more than 40 countries worldwide. However, she is not a registered health professional nor doctor of any sort. The information in this posting is simply her own personal opinion. www.listen2yourgut.com

LEGAL DISCLAIMER - This email is not intended to replace the services of a physician, nor does it constitute a doctor-patient relationship. Any application of the recommendations in this email is at the reader's discretion. Jini Patel Thompson and Caramal Publishing Inc. (DBA Caramal Holistic Health) are not liable for any direct or indirect claim, loss or damage resulting from use of this email and/or any web site(s) linked to/from it. Readers should consult their own physicians concerning the recommendations in this email.
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