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My daughter was diagnosed with Crohn's disease 5 years ago. We put her on a strict diet of no gluten and high nutritional smoothies. Her calprotectin level was 1700 when first diagnosed. She was also very sick.
We were able to get her to a healthy state by diet and no drugs. We followed The Maker's Diet by Jordan Rubin.
It has been 5 years and she has seemed pretty healthy. She has had a hard time gaining weight but for the most part she has seemed healthy.
That leads me to this weeks calprotectin level. They were 2500. The highest they have ever been. In the past they have checked her levels and they came in between 250 and 350.
Her ferritin level was 17.8 and the dr. Put her on feroussulfate. Her creatinine level was low as well as her SGPT. Her RBC , HGB, HCT were high. She seems healthy. She doesn't have as much energy as most kids her age but for the most part she seems healthy.
Should I be concerned. Her dr. Appointment is not for another two and a half weeks away. We are starting her on the diet again in hopes to go back into remission but that can take up to six months.
:sign0085:
 
Welcome Cheryl mom,
Sorry she is having some issues. How old is your daughter? My son was pretty asymptomatic but for the lack of growth and weight gain and fatigue. His labs have always been in the normal range except for calprotectin which was 90 in remission but was 300-400 with simmering inflammation going on which caused the growth/fatigue issues. We thought my son was doing great as he seemed healthy.
MRE done after the raised calprotectin showed inflammation throughout the small intestine.
I'm not saying diet isn't helpful or that it doesn't work for some but our poor kiddos just seem to get hit so hard with it and the disease is sneaky. For us we have tried many diets and although he felt good for a while they just didn't seem to get him to a good solid remission.
Certainly wouldn't hurt going back to the diet since it has worked for you in the past. Hope it's just a blip and you can get her back on track but I personally would certainly investigate further it certainly sounds as if there is something going on.
Have a peek around the parents of kids with ibd section, lots of wonderful parents with tons of advice.
 
Thank you for your reply. For the past year I have allowed her to eat a lot of junk foods in hopes of helping her gain some weight. It hasn't worked. The maker's diet is strict and a lot of work and money but is effective in treating the disease.
She is turning 12 on the 25 th of this month. My oldest daughter who is now 28 had Ulcertive Colotis when she was young and despite every medication on the shelf she ended up getting so sick she had to have a J pouch. She is doing well now but it was not a fun journey. We spent a year in the hospital because of dr.s and nurses making a lot of mistakes. 10 surgeries in that year. I am hoping to avoid that with this daughter. I give praise to Yeshua for helping us keep this one out of the hospital so far.
What do you do when your child is not complaining of pain or symptom but test results show something severe. It just doesn't make sense. Should I wait for her appointment or try to get her in sooner?
 
My son was asymptomatic and seemed healthy for over a year or so. He had no pain, normal bms, appetite etc. He did seem to not gain weight and maybe had less energy than others his age.

His calprotectin while asymptomatic was 300. Due to inability to gain we opted for surgery. The area of simmering inflammation(reason for 300 calprotectin level) looked like hamburger meat. The surgeon was shocked he wasn't in severe pain. Surgeon said there was deep ulceration and fissures of the bowel and perforation was inevitable.

No matter the treatment plan the goal should be full mucosal healing. A fecal calprotectin level of +300 if sustained should warrant further testing. Simmering inflammation can cause serious issues and damage.

I would at least go for further testing to assure that damage isn't occurring.
 
What do you do when your child is not complaining of pain or symptom but test results show something severe. It just doesn't make sense. Should I wait for her appointment or try to get her in sooner?
This is exactly the situation we were in. For us moving on to the big guns in medicine (remicade) made a huge difference. We were looking at possible surgery but decided to give remicade a try before that and for us it worked. I figure the longer we can keep things under control the less chance we have of surgery. We treated pretty aggressively based on his father who also has Crohn's and had many hospital stays and several surgeries in the first 5 years after diagnosis before we found a treatment that worked well for him.
The difference from what I thought was remission to what he is know is complete night and day.
It's really important to get things under control so that they can develop naturally. We just weren't hitting puberty, he had pretty much stalled at the beginning. In the last year I think he has gone through 4 years of puberty all at once. So that is what really drove us in the end to keep pushing, I figured we had to be missing something as he just wasn't developing along with his peers and his younger brother was much farther along than he was. We went through all the endocrinologist testing to discover it wasn't really anything on that end that was holding him up and it was in fact simmering inflammation/disease that was the issue and once that was resolved he just took off.
It must be extra hard when you have had such a hard journey with her sister. I don't know if a couple of weeks is going to make much difference but I would try and get her in sooner if you can.
 
Contacted the dr office. Her dr. Is going to schedule a few more test. Has anyone's child been able to swallow the pill camera? My daughter has had it a few times and has not been successful at swallowing. She is older now so I am hoping she can swallow it. We will probably need to do a barium follow through. She was very young when she had that one done and it took forever for her to get through the barium.
 
Did they offer you kool-aid packets to flavor the barium? My son has had a couple SBFTs and MREs he had chosen to take the barium through an ng tube. But is accustomed to placing the tube himself since he has done it while on supplemental EN for weight gain.

I'm going to tag my little penguin mehita and maya142 as they may have some tips or tricks. Jmrogers4 will probably be by with their experiences as well.
 
Hi and welcome.
I'm a mom to a 6 yr old girl with this disease.
From our personal experience that lack of growth and lack of energy is always a cause for alarm. Since my goal is not only keep her colon in but get her thru puberty.
We tried diet, homeopathic and such but for us in the end was quality of life.
She's now on Remicade and doing well GI wise.

Now I did do the Maker's Diet for my wedding. :thumleft:Lost lots of weight and looked great in the dress but..............................:yfrown:
When I went off it I found that I was VERY allergic to milk.
My doc (who was very religious) said the diet was to blame.
Had I known this could happen, I would have not done it.
Ironically I married a dairy farmer.:yfaint:

I hope you get answers for her.

HUGS
 

Maya142

Moderator
Staff member
My daughter was able to swallow the pill cam - but we were both surprised at how big it was! I've heard of parents who had their kids practice swallowing things about that size - like candy. They can also place the pill cam into the stomach during an endoscopy - I believe they routinely do so for very young children. You can have your daughter try to swallow it but if it doesn't work, you could always ask them to place it instead of doing a small bowel follow through.

My daughter was able to drink the barium - at our children's hospital, they flavor it with chocolate syrup.

In terms of treatment, we had to go to meds because of my daughter's arthritis, but there are some parents on the forum who do try diet. Some do a combination of meds and diet - I'll tag crohnsinct.

Even if your daughter is asymptomatic, you really don't want there to be so much inflammation in her gut - it can lead to all sorts of complications - strictures, abscesses, fistulae. I would try to get in sooner with her doctor but don't panic if you can't - a week or two probably won't make a huge difference.
 
Thanks Maya, I will have her practice. She still remembers trying to swallow the camera and I am hoping she can overcome that experience.
The dr. Suggested methotrexate. I do not have good memories of that drup. My daughter already gets every flu and virus going around. I can't imagine putting her on something that makes her even more susceptible to sickness.
Farmwife, thanks for sharing. Not sure how the Maker's diet could cause an allergy to milk. We only use raw goat milk. It is the easiest to digest and is a complete food. Here is a link to some info on it.
http://www.naturalnews.com/031586_raw_goats_milk_health.html#.
 
Thanks Maya, I will have her practice. She still remembers trying to swallow the camera and I am hoping she can overcome that experience.
The dr. Suggested methotrexate. I do not have good memories of that drup. My daughter already gets every flu and virus going around. I can't imagine putting her on something that makes her even more susceptible to sickness.
Farmwife, thanks for sharing. Not sure how the Maker's diet could cause an allergy to milk. We only use raw goat milk. It is the easiest to digest and is a complete food. Here is a link to some info on it.
http://www.naturalnews.com/031586_raw_goats_milk_health.html#.
We use to drink/cook with goat milk ( store bought) also. Does raw goat milk have an after taste. The store bought kind does.
My hubby drinks our raw milk. It's the best creamer in the world. :)
I forget what my doc said but it was along the lines of when you stop a food ( dairy in my case) that some people build up an intolerance/ allergy. I have read 2 medical papers on how this happens but it's been along time (15 yrs).
 
Farmwife, the goat milk taste wonderful unless it is going bad. Then not so good. We all love the taste of it but only Rachel drinks it because it cost $10.50 a gallon. Not something I can afford for the whole family. I have heard that if there is a male goat around the female while she is lactating it can cause the milk to taste gross. The hard part is finding fresh raw goat milk.
Why did you stop drinking milk on The Maker's Diet? I'm thinking he encourages drinking milk if it is from a grass fed cow and raw. Though 15 years ago it might have been different.
The Dr. Called. He has scheduled her for a small bowel follow through. I am glad to hear that they are trying to make the barium taste better. They also said she would be having an endoscopy and colonoscopy. So she won't need to swallow the camera on her own. They will just put it in when they do the endoscopy.:thumright:
 
Rachel had her test done. They did a small bowel follow through and found an area just before the large intestine that looked like a fistula. They then sent her for an MRI Monday and a colonoscopy and endoscopy Tuesday. They found the stomach with ulcers, the beginning of the small bowel and the end of the small bowel with ulcers. Not sure yet how deep they go. Will have to wait until Monday to find out what the Dr.wants to put her on for meds. She started prednisone yesterday.
Can anyone share their experience with me in regards to what meds you are using and the side effects. The doctor mentioned one that you get in the hospital several times a year and once you start it you have to stay on it.
I truly don't understand why she doesn't seem sick on the outside.
 
Hello Cheryl mom. My daughter is asymptomatic. She does not suffer from pain (only before DX after God knows how many months or years sick) she has never bleed. Her trips to the bathroom at her worst are three to four times when she is on a flare. Her lab tests does not reflect what is really going inside. Your Doctor may be referring to Remicade, it is a biologic med that is given as an outpatient at a hospital or clinic. Usually is done every 8 weeks after loading dose but some get it every 6 or 4 weeks. Great medicine for my daughter so far.
 

my little penguin

Moderator
Staff member
More than likely remicade
You have to understand crohns is sneaking so even though diet sometimes seems to work
Since there are not many symptoms on the outside
The insides are being "scarred" or eaten up by the chronic inflammation
Googke images of colonoscopies and small intestines removed from crohns
If you saw those on her skin on the outside you would beg the doc for meds.

The good news is remicade is a miracle drug as are other biologics in my book
They work well in kids with little side effects and give kids the best chance at normal
DS was dx at age 7 and now is 11.
He currently is on humira plus Mtx ( mtx for his arthritis)
Gi tract looked clean and normal last scope plus fc was only 21 .

Good luck
 
So we started on prednisone Tuesday night. My little girl who never complains and has had no symptoms is now complaining about being tired all the time and she can't seem to eat more than a few bites without feeling sick. She is continuously having hot flashes and is dizzy most of the time. Is this normal for prednisone?
We see the doctor Monday to find out what he wants to do in regards to her future treatment. I am hoping we won't have to stay on the prednisone for too long. My oldest daughter who had ulcerative colitis took prednisone for so long that she got the facial mooning. Every time the dr. wanted to wean her off she would get worse and need to stay on it.
 
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