Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » The Little Farm Girl, LDN, Full EEN & Mayo Clinic


 
12-08-2013, 05:37 PM   #91
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I SWEAR by chiropractors. I have a problem with my spine and the docs were ready to put a metal rod up my back. The morning of the surgery I called and found a chiropractor in town and in 3 months later was walking without pain. Also it was the Chiro that figured out my milk allergy. She's all ready been to one. Thanks everyone.

LDN is a fail....for now.
Have a question.

Methotrexate vs 6MP
Which one is the best to get into remission and hopefully stay there?
As of this week it looks like these are the two to chooses from.
Of course this could change with upcoming appointments.

I know your not doctors and your advice should be taken a personal opinions only.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-08-2013, 05:52 PM   #92
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Pros and Cons for us
Methotrextate -
Pros- Controlled symptoms completely, only took once a week
Cons - bad lung reaction, cracking, bleeding rash on hands

Imuran (sister drug of 6mp)
Pros - We experienced no side effects
Cons - Controlled symptoms most of the time; not 100%, needed allipurinol to make it theraputic.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-08-2013, 05:55 PM   #93
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Given her age I would try pills over weekly shots .
That said one may work and the other may not its too individual.
Mtx takes at least 6-8 weeks
6-mp up to four months.

Mtx better track record with joint pain stuff
6-mp better record for crohn's

So it is as always up to your doctor as to which is best suited for her at this time .
__________________
DS - -Crohn's -Stelara
12-08-2013, 10:01 PM   #94
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Given her age I would try pills over weekly shots .
That said one may work and the other may not its too individual.
Mtx takes at least 6-8 weeks
6-mp up to four months.

Mtx better track record with joint pain stuff
6-mp better record for crohn's

So it is as always up to your doctor as to which is best suited for her at this time .
Her rheumy suggest Mtx.
Her GI suggest 6MP.

This coming week we'll discuss between the two which to use.
Her bladder and possible kidney issues are the only thing we're waiting on.
12-09-2013, 04:00 AM   #95
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Only tried the 6mp, so no help on the Methotrexate. I would say if they are equally happy for her to try either, then I would also go for the 6mp as you can get it as a liquid, so no injections.
Good luck with the decision!
12-09-2013, 05:44 AM   #96
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
6-mp only comes in pill form in the US . Not liquid .
12-09-2013, 06:01 AM   #97
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Boston hospital talking about liquid 6MP.

http://www.itpkids.org/docs/6m.html
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-09-2013, 06:19 AM   #98
DanceMom
Senior Member
We've only tried 6-mp so far but will be trying mtx soon. 6-mp caused severe nausea for A so we woke her in the middle of the night to take it. The nausea subsided after a few weeks and we were able to give it at bedtime. She never reached therapeutic levels and had to quit due to liver toxicity.

Mtx is more widely used. A's doctors prefer the injectable form because it is more easily absorbed and typically has less side effects. I think taking it once a week is convenient but I do worry about the effects it may have on her liver.

Whatever choice you make will be a good one. Good luck!
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
12-09-2013, 09:00 AM   #99
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
It is to individual really to say I think. If GI wants 6mp and joint pains are an EIM of IBD then I would go with what the GI thinks is the best shot at getting the IBD under control.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
12-09-2013, 09:06 AM   #100
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
Are her rheumy and GI at the same hospital. Maybe I am spoiled but all O's docs talk we each other and come up with a plan and present it as a united front.
12-09-2013, 09:26 AM   #101
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Yes both docs are at the same hospital. I'm assuming 6MP also. The rheumy has always felt the joint pains are an EIM also. Her GI never thought that. Could that have change, I guess I'll find out when the GI calls. This will be a fun conversation.

Making some calls NOW for a new GP for Grace.

When getting a new GP, how did you fill that doctor in on your child's back ground?I was thinking about getting letters from her specialists stating her dx's.
Pre-sending the info before or appointment.
ANYTHING ELSE?
12-09-2013, 11:36 AM   #102
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
When we switched Stephen's GPs, I made copies of EVERYTHING in my binder. I had it sorted by:

1. Pre and at diagnosis info - doctors notes, admission notes, etc.
2. Labwork
3. Imaging and scope results (as S only had rheumi related tests/apptmt at diagnosis, I included his x-ray results in this 'group' - but, as you probably have more info from other specialists, I would 'bundle' that information separately).
4. Other - ie copies of summaries from GI to previous GP (and whatever else I have..)

I gave an explanation of what had gone on with Stephen and a quick summary of the 'library' I was giving him and explained that I was giving him 'everything' and I'd leave it up to him to throw out anything he didn't need.

To be honest, I'm sure I gave him way more than he needed but... as I don't know what might have been of importance/interest to him, I just gave it all.
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-09-2013, 11:38 AM   #103
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
So basically the folder I made for Mayo. Good I still have it. YA!
Thanks Tess
12-09-2013, 02:46 PM   #104
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
Lucy and grace have different presentations so our experience may not reflective of what yours will be like. Lucy was on 6 mp for a year - firstly on its own, then with flagyll and cipro and then with infliximab. While her symptoms improved sporadically while on flagyll and infliximab the GI (and I agree) thinks 6 mp had no positive benefit in relation to the crohns. While she was taking it she had no side effects and her blood work was always fine.
She took 6 mp daily in liquid form.
After Lucy failed infliximab the GI switched her to humira and methotrexate - he is using methotrexate as a conduit to the humira as opposed to a treatment for the crohns - if that makes sense. She takes it in tablet form once a week and is tolerating it very well. She did have some mouth ulcers about two months ago but since then she has been fine.

I would probably go with what the GI is suggesting as he is treating her primary condition.

These are really difficult decision, don't underestimate how stressfull they are so mind yourself too. Hope grace is doing better

Polly
12-09-2013, 08:55 PM   #105
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Both my daughters have a form of juvenile arthritis and their biggest complaint is pain when sitting for long periods of time. They both have 504s and one of their accommodations is extra breaks so they can get up and walk around in long exams. Pain that gets better with movement is one of the characteristics of inflammatory arthritis.
Hope she feels better soon!
Thanks to Maya and MLP,

I received a letter from Grace's rheumy that's for her teacher.
In this letter is states recommendations for the school to allow (sweet, I didn't even ask them to do it).
It also says the reason why, possible juvenile arthritis.
Wow, were they going to tell ME!
I mean we "the forum" (Maya and MLP) already put it together but it would have been nice to hear it from them.

Update:
Grace put herself to sleep. Fatigue setting in again.
12-09-2013, 10:26 PM   #106
Maya142
Forum Monitor
 
Maya142's Avatar
Really sorry to hear that, but glad she's getting the accommodations she needs. For what it's worth, both my daughters have been on Methotrexate. My younger daughter couldn't tolerate the side effects (severe nausea and dizziness) but most kids tolerate it well. It helped her a LOT though so we were really sad to give it up. We might even try it a third time if we have to!
My older daughter has been on it for 2 years, absolutely no problems - it really helps her joint pain.
Good luck!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-11-2013, 04:13 PM   #107
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
This is for my farm boy.
What can cause 8 hrs of cramping and diarrhea and then 5 days of no BM's?
Since having a bm today the cramping has started again.
No viruses afflicting us right now.
12-11-2013, 04:20 PM   #108
Rocking on
 
Rocking on's Avatar
 
Join Date: Nov 2013
Location: Alexandria, Minnesota
Sounds like a stricture. All that inflammation and scarring builds up and closes the anus. You still have all the pain but it's even worse because you cant release. I go in for dilation procedures a couple times a year. Basically they sedate me and, well, go at it with the medical equivalent of a dildo. That stretches out the stricture and allows me to release again.
12-11-2013, 04:24 PM   #109
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Thanks Rocking on BUT this is my boy. He's not dx with IBD..............yet.
Ironically he's the one that you would consider more text book of IBD but yet his sister has it. Go figure, KIDS.

His doc is keeping a close eye on him. His sed rate was elevated last draw. We shall see.
12-29-2013, 02:31 AM   #110
Naturelover
Senior Member
 
Naturelover's Avatar
 
Join Date: Jul 2012
Location: Westminster, Maryland

My Support Groups:
Goodness gracious! When it rains, it pours!
Hugs to all!
12-29-2013, 02:56 AM   #111
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
How is your boy now??

Did you all manage to have a good Christmas?? Xx
__________________
Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
12-29-2013, 09:43 PM   #112
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
It's sad to say but with him I'm taking a wait and see approach.
His stomach pains are increasing (but not horrible) even though he's been on a PPI for 6 months.
Can't gain weight and not growing as fast as before. He has a doc apt. soon and will ask for labs again. Other than the stomach, weight and growth he's doing GOOD.

Thanks for asking.

For Christmas my son got a HUGE army set. Complete with tanks, soldiers, planes, bad guys and a 1000 tiny pieces for ammo and such.

So needless to say we've had a lot of battles and screams of despair as the "bad guys" have kidnapped Grace's dolls.
But don't worry GI Joes comes to the rescue.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » The Little Farm Girl, LDN, Full EEN & Mayo Clinic
Thread Tools


All times are GMT -5. The time now is 04:05 PM.
Copyright 2006-2017 Crohnsforum.com