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01-31-2013, 07:38 PM   #31
Farmwife
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I'm glad your boy is doing well.
The "just grow out of it" is something I still dream of.
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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
01-31-2013, 07:41 PM   #32
ChampsMom
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I love this thread! Interesting thing, when Caitlyn was diagnosed my baby was six weeks old. The GI doctor told me to nurse the baby as long as possible. From three months old my little one started having stomach issues. She is now four years old and we listened to the advice to keep nursing. At this point the doctor is saying all her labs and fecal calprotectin is normal so we will just keep an eye her. I keep hoping the prolonged nursing will help prevent her from getting sick. Whenever people comment why are you still nursing I can at least tell them the doctor said to! ( maybe I should get a doctors note LOL)

My youngest will 4 the end of April and we are still going strong!
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Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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02-01-2013, 02:33 PM   #33
Henrietta78
 
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Wow- so many extended breast feeders on here! Who knew?
02-17-2014, 05:00 PM   #34
serrickson
 
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All four of our kids were breast-fed until 1. I do believe there is a connection with the transition to cow milk, and no, I don't think a baby has to be fed cow milk as a primary source of nutrition for it to make an impact.

Our oldest has Crohn's, diagnosed at age 6. He was a voracious nurser, he would go on all-night marathon sessions with my wife, leading her to tears one night. First child, what does one do? For him, nursing was merely a "delay" from cow milk exposure, a substance that takes many forms, and is in a whole bunch of stuff we eat--aside from traditional milk-based products.

Anyway, once on cow milk, our oldest took to it like nursing. He would wake up in the middle of the night screaming for a bottle!! And it wasn't like he didn't eat any solid food, his solid food intake was that of his milk intake: A LOT!! Needless to say, he was a big toddler, way off the charts in height and weight until age 6. Interestingly, our son sort of quit milk, even on cereal, at around age 4.

Now after having the advantage of fathering 3 other awesome kids, I can make comparisons, and one thing I've noticed is that our oldest was an outlier in many ways, one way obviously due to his *early* love for milk. Another difference between he and his siblings is that he developed chronic EAR INFECTIONS once off the breast. Again, nursing delayed cow milk exposure.

Some claim nursing prevents ear infections as well as a host of other things, no it doesn't, it just delays cow milk exposure, however great that exposure is, and delays the onset of mucus etc. Mucus is usually associated with milk and milk products i.e. "drink lots of clear fluids" when you're sick...

I say all this about milk because the cow milk exposure, in retrospect, exacerbated our son's colds. Unlike his siblings, he was in childcare 5 days/week for 3 years. He would get sick, A LOT!!! Continued milk exposure, as I now know, made his colds worse, and contributed to his ear infections. These infections were treated with antibiotics, continually, irresponsibly, which was VERY commonplace 10 years ago. Probably isn't very uncommon today either...

Anyway, the exposure to antibiotics no doubt trashed our son's gut flora, which we found very low in 2010, the year he was diagnosed with Crohn's. Prior to this, for two years, John battled STREP and SCARLET FEVER, usually with no fever or sore throat!

The thinking is that the poor state of health he was in, although he appeared otherwise, after going on cow milk, after having the ear infections, after the ear tubes; then progressed into things like Strep and finally had it's way in the form of Crohn's.

Our other kids have never had Strep, let alone Scarlet Fever, even when exposed to our oldest. He was the only one to have reoccurring ear infections, for him, starting the month after weaning. He's the only one who was in childcare as well. John had more ear infections in 6 months than his other three siblings combined. Our 3rd has had 1 infection, and he's almost 6. Our 2yo hasn't had one. Our 2nd didn't get ear infections until 3yo and we treated those with saline, as advised by our German pediatricians. After infection #3, they recommended an ENT, and he put in tubes right away.

I know, it's hard to digest, but John is now on the Paleo Diet and simply thriving. Look at the chart I put together and YOU decide if milk has played a role in his Crohn's. Note that he's been on 10mg MTX and 100mg Azathioprine since November 14, 2011 through today. Also, note the yellow and red areas, watch the drop in calprotectin when GF--then watch the drop when Paleo--the highest scores are HALVED and then HALVED again!! BTW, since he quit grains, sugar, milk, etc. he's GAINED 25lbs and grew 2".

I don't view milk and grains as causes necessarily, I see them as contributory. They set the table so-to-speak, with milk being the primary culprit. Then I think it is a matter of cross-reactivity, which explains the success while gluten-free. Indeed, casein and gluten are supposedly close, molecularly... Oddly enough, I look at things like Modulen, CIBreakfast, etc. all things recommended for Crohnies, that I believe only make some Crohnies sicker. Maybe not all, but definitely some. My son is one of them, I am convinced!
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Son diagnosed at age 6: August '10

Perianal fistula: August '10
Upper/Lower GI: August '10
Prednisone: August '10 to November '12
AZA: August '10 to present
MTX: November '11 to present
Folic Acid: November '11 to present
Upper/Lower GI/MRI: January '13

100% PALEO: JUNE '13 to PRESENT

IN CLINICAL REMISSION SINCE JULY '13

Calprotectin high: 3000 (November '11)
Calprotectin low: UNDER TWENTY!! (February '14)
02-17-2014, 09:22 PM   #35
crohnsinct
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The Crohn's gods are laughing at us again...look at the forum trying to figure IT out. I HATE the mystery of this whole disease. But just for fun:

Oldest daughter bottle fed milk based formula from the minute she was born..sorry I didn't even try. She is my healthiest child.

Crohnie in the middle: Half and half but switched very early to non cow milk formula as they suspected an allergy. I also came off all milk products.

Youngest: exclusively breast fed no cows milk other than what she got from me until 3 years old. Vitaligo (Auto immune disease) and we are getting a fecal calprotectin test this week as constant stomach aches, little weight loss, vomiting and bloody bm's.

I am giving the Crohns gods my one finger salute!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
02-17-2014, 09:32 PM   #36
durwardian
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Let me jump in here with this. Neither myself nor my 4 siblings were breast fed (adopted). We all were raised on cows milk (literally gallons of it, my uncle had a dairy farm). We all drank the same water, breathed the same air, went to the same schools, churches, etc.. I develop Crohns. 1 sister developed MS. Yet, my birth mother has Crohns, and 4 of 5 of my half/siblings have Crohns. On another thread, discussing how things like MAP might be spread/transferred... thing of it is... IF everyone who was exposed to MAP (for example) were certain to develop Crohn's, more people would have it. In a perfect world, people who regulate milk and dairy industry would quarantine all animals with Johnes. Wonder what that would do to the incidence of it? Or, at the very least... change the way milk is pasteurized. Or at least go public with the info that this cow product MAY contain MAP, and let the buyer beware. (Whether or not MAP causes Crohns is one thing, but that MAP meat/dairy product is let into our food chain is totally another. You don't see that disclaimer when they are advertising 'it does a body good' or 'natures nearly perfect food'.)... But, I've slipped off onto a totally separate tangent.

My son's started on the breast (not mine), but they switched to cow's milk. When I think about all the milk they consumed (not to mention how much it cost... uncle had retired).. only to occasionally wonder if MAYBE it will turn into some deadly time delay fuse... ah, well.. the grey hairs in the photo come naturally. I should have known that there would be no quick and simple eureka. But, I thought it was worth tossing out there.
Cows milk can lead to problems if introduced early, but doesn't have to. Mainly a false immune response. Mother's milk has immune system items in it for the body to learn, so it is probably more important than we think. But to date, there is no connection that I know of. I was fed with an eyedropper, pumping the milk and then feeding it to me, so I got some and still have a messed up immune system. I think somebody just pee'd in the gene pool. I am also the only one with issues. However, there are other family members that have suffered with similar problems, they are now dead so I can't ask what symptoms they started with and how it progressed.

Question for you, did your sister with MS eat dirt at any stage of her life? There are some nasty bugs I was reading about, they cross membrane barriers and remain dormant in the brain on nerves or something, then when you are weakened, or they are somehow active, they do damage. I hear they are blaming some forms of MS on this now. I don't know if they can kill them, but recognizing another bug is the start of knowing how to kill it.

I think we have something similar going on in many falsely diagnosed patients. Many bugs and other issues can reproduce all the symptoms of Crohn's, IBD, UC, so I really have issues with the quick way doctors are dismissing every test and throwing drugs without checking all the facts. We should create a checklist for patients to take to the doctor... hmmmm.
02-18-2014, 04:14 AM   #37
serrickson
 
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Many bugs and other issues can reproduce all the symptoms of Crohn's, IBD, UC, so I really have issues with the quick way doctors are dismissing every test and throwing drugs without checking all the facts. We should create a checklist for patients to take to the doctor... hmmmm.
Agree 1000% with you. Our son was "cleared" on both gluten and milk, wheat, everything else you can imagine, multiple times, even with two rounds of biopsies spanning 2 years and 4 scopes.

Yet, when I give the big "one finger salute" to the Dr. and remove gluten and milk on my own--the Calprotectin drops like a stone!!!! Grant it, we're still using AZA and MTX, but the turnaround was immediate and DRASTIC. Now we are seeing it as sustainable. But those "tests" say otherwise and THAT's what the Dr. goes by...

Many doctors, maybe most, have about as much knowledge about nutrition as I do. Remember that. I'm no expert btw. I just keep ridiculous notes and data though. I've looked at the overwhelming majority of our son's poop over the past 4 years as well. He doesn't eat it unless I keep tabs on it. I do my HW on him.

The Drs. might also tell you, as our specialist did, that all tests are notoriously inaccurate. In fact, he even deems scope procedures inaccurate, noting that most people don't realize the limitations of the equipment and the environment. Your gut, for example, needs to be 100% clean. He claims that most aren't. He's shown me pics and well, he's right.

The one thing he does depend on is the calprotectin stool test. We're in Germany and he's been using it for quite some time. When the score is high or low--we see it in our son, in the presence or absence of the following: bad breathe (very big one), sores, fistula, dramatic eye/teeth changes, etc. It's the most amazing thing ever. Maybe it's because our scores have been so high over the years?!?! I can't speak for the 500 crowd, we've consistently topped the 1000-2000 range.

Our son's stools are otherwise normal, no blood, no mucus, sometimes no loose stools. Even still, again, he's been as high as almost 2800/3000 range, severely inflamed, and that stinking calprotectin clues us into all his other symptoms (i.e. bad breathe) every single time.

But like you said, Drs. have a drive-thru approach. Remember too, this is a business.
02-18-2014, 04:19 AM   #38
serrickson
 
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The Crohn's gods are laughing at us again...look at the forum trying to figure IT out. I HATE the mystery of this whole disease. But just for fun:

Oldest daughter bottle fed milk based formula from the minute she was born..sorry I didn't even try. She is my healthiest child.

Crohnie in the middle: Half and half but switched very early to non cow milk formula as they suspected an allergy. I also came off all milk products.

Youngest: exclusively breast fed no cows milk other than what she got from me until 3 years old. Vitaligo (Auto immune disease) and we are getting a fecal calprotectin test this week as constant stomach aches, little weight loss, vomiting and bloody bm's.

I am giving the Crohns gods my one finger salute!
I'm all for the one finger salute--I salute with you! Hang in there!! I for one appreciate the information you posted. I have no idea how long our son's success will last, that's why I keep researching, looking for anything that might help later on down the road.

One more salute to Crohn's, for good measure!! BTW, I'm from Stratford, CT originally.
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