Sister's 10 year old boy

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OUCHHHHH with the toe! Must have hurt! Hope his tummy settles.

Have a fantastic time :emot-waycool: xx
 
For inflammation: rest, ice, elevation and compression (ace bandage). I too would steer very clear of the NSAID.

Have a great trip! Don't become tiger food!
 
Wow India! I hope Liam is okay, both toe and tummy wise, and you all have a fab time!



Dusty...
happy-holidays-smiley-emoticon.gif
 
We had a fabulous trip. Liam's stomach didn't worry him while we we're away and he ate well. On the first night a tiger attached a bison about 30 meters from our room and we we're warned not to walk between building except in a group.

My oldest informed Liam that tiger go for the small ones and the injured ones and he was both, then proceeded to call him 'tiger bait' for the rest of the trip.

It turned out to be the perfect trip for a small boy with stitches in his foot as it was two 4.5 hour safari's a day through the national park in small open top jeeps (not allowed to get out of the vehicle), so the foot got a lot more rest than it would have normally.

We saw tigers on every trip, we're lucky enough to get to see a Slothbear reasonably close which is very unusal and saw lots of other small mammals and birds.

Liam lost a little bit of weight while we we're away and is now the lightest he's been since I started tracking his weight closely late last year, BMI 14.3 (which is 4th percentile). This is the first time my BMI calculator has given me a figure under 5 so will head out today and see what EN products it's possible to buy here and get him started on that.

Today is also when we reduce the PPI to every 2nd day, it will be interesting to see how that goes.
 
Maree. said:
We had a fabulous trip. Liam's stomach didn't worry him while we we're away and he ate well. On the first night a tiger attached a bison about 30 meters from our room and we we're warned not to walk between building except in a group.

My oldest informed Liam that tiger go for the small ones and the injured ones and he was both, then proceeded to call him 'tiger bait' for the rest of the trip.

It turned out to be the perfect trip for a small boy with stitches in his foot as it was two 4.5 hour safari's a day through the national park in small open top jeeps (not allowed to get out of the vehicle), so the foot got a lot more rest than it would have normally.

We saw tigers on every trip, we're lucky enough to get to see a Slothbear reasonably close which is very unusal and saw lots of other small mammals and birds.

Liam lost a little bit of weight while we we're away and is now the lightest he's been since I started tracking his weight closely late last year, BMI 14.3 (which is 4th percentile). This is the first time my BMI calculator has given me a figure under 5 so will head out today and see what EN products it's possible to buy here and get him started on that.

Today is also when we reduce the PPI to every 2nd day, it will be interesting to see how that goes.
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Sounds like a great trip. :) I'm glad he was able to eat, etc. Sorry he's still losing weight. Keep us informed...
 
Stepping down the PPI to every 2nd day didn't work. By his 3rd day without Liam had severe stomach pains. I'm giving it to him every day again and will wait until he's been feeling well for a while before trying again.

Have added 2 boost smoothies per day to his diet and he is enjoying these.

New low weight this morning 28.3 kg which is 12 pc weight 14.0 BMI 3 pc BMI
My husband has suggested the weight loss over the last fortnight might be due to him not coping with his anti malaria tablets. He finished the course of those this morning so hoping weight will pick up during the next few days.

He is scheduled to go back and see his GI in 6 weeks.
 
In the last fortnight he's lost just over a kilogram. Seeing the GP this afternoon to have the cut on his foot redressed. Will ask him what he thinks.
 
The amounts are small nothing like what you experience with Sarah which was really scarey and I'm aware that I've got rather obsessive about what he weighs (I've been recording daily weights for him for months).

But I'm feeling the same way that there is so little of him that any weight loss worries me. Back on 24th Feb after a week on Motileum he was 29.9 and a full cm shorter than he is now. I'm feeling like if he doesn't start putting on weight again by start of next week that I need to see if it's possible to get him an early GI appointment.
 
Didn't get a chance to speak to the GP about weight this afternoon as he was frantically busy but should get a chance to talk to him during the next few days as sounds like we are going to have several more visits.

When he first cut his foot, the doctor put him straight on antibiotics because we we're heading to India. We took Liam to the GP the night we got back from India and the foot was looking really good.

Turns out the foot is now infected and the wound isn't healing as it should so the GP has prescribed another 10 day course of antibiotics and wants to see Liam every 2 days until it starts improving.
 
It sounds as though you have a very pro-active GP!! I hope his foot begins to heal this go round!

Has his stomach issue settled since ending the anti-malarials?
 
GP has been excellent. When we see him tomorrow it will be the 5th time he's examined Liam's foot in a fortnight. Because the cut is very badly positioned he prefers to have the staff at the hospital wash and dress the wound rather than have us do it at home.

He warned me yesterday that he thinks it will take a long time for the foot to heal, the stitches were in for 10 days but had to be pulled out due to the infection and the wound immediately opened up completely. Although they've bandage it to try to hold it together, he thinks will need to be restitched when the infection heals.

Stomach is still hurting (more than the foot). But we've now got the Augmentin (Penicillin based antibiotic) which Liam is taking at twice the standard dosage to further complicate the picture. (The hospital pharmacist double checked the dose with the doctor as it was outside the normal range & I've checked the online Drug Information sheets - both of which state that it can be given at that higher dosage level in the case of severe infection.)

Suspecting that it might be too much to hope for to expect him to gain weight until he gets over this infection and finishes the antibiotics. I just hope that he doesn't lose anymore weight as I know I'd find that really worrying.
 
typically you wean from something like the ppi(prevacid ) to an H2 blocker then to nothing.
SOMetimes you need to very slowly reduce the dose.
Can you call the GI and ask for recommendations on how to do a much slower wean???

I know with my oldest it just didn't work but the wean was not an issue at all for DS.
 
Thanks MLP will ask if he can suggest something more gradual.

At the moment I've put stepping down the PPI totally on hold. I want Liam to start putting on weight again first. The antibiotics he's taking for his foot infection has really knocked his appetite about. Conscious I'm probably being terribly neurotic here given his body is fighting an infection but really not coping well with the fact that every time I weigh him he seems to be lighter.

The GI prescribed 3 months worth of the PPI when we saw him last, in case the stepping down didn't work. Which is part of why I'm feeling like stepping it down is a lower priority for now.
 
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FW, Liam isn't diagnosed with IBD yet. I'm not sure that is an option yet.

Maree, Augmentin can cause diarrhea with normal doses, I imagine with high doses it could be bad. Just want you to have a heads up. Sorry his foot got infected :(. I hope he is healed up and back to his whole self soon.
 
CarolinAlaska
Hi, I know he's not dx yet but neither was Grace when she started doing Boost 1-3 times a day. I knew from this forum that keeping the weight on was just as important as getting a dx.
 
I've been giving Liam 2 Ensure's a day to supplement what he is eating.

At the moment Liam's GI isn't sure that there is anything wrong beyond Acid Reflux (as his 2nd calproc test and colonoscopy came back normal so he thinks the high calproc test that made him think Crohn's might have been a lab error. Acid Reflux is being treated with the PPI, until we started to step that down (now stopped trying) his GI symptoms had totally gone away.

His weight losses worry me but I'm not sure this is a valid concern, when we saw GI last on 24/2 (after a week on Motililum and PPI where he'd gain weight) Liam's height was 141 cm and his weight 29.9 giving him a BMI of 15.0 and BMI percentile of 13. As of today his height is 142 cm and his weight is 28.1 (BMI 13.9 BMI percentile <3)

He's lost most of that weight in the last two weeks but during that time he has had two courses of heavy duty antibiotics plus antimalarial tablets, so perhaps the weight loss just relates to the sore foot & the meds and isn't a sign of anything significant.

What I've read about untreated Crohn's flaring is that you get dramatic weight loss, not these small drops in weight? Really not sure if I have any reason to be validly concerned here but ...
 
Hugs, it's so easy to feel paranoid. :yrolleyes:Welcome to my world.:lol2:
Grace's weight NEVER wavered much until the downhill turn. That was after 2-3 years of trying to get answers. Not all IBd'ers (not that he has this) loses drastic amounts of weoght!
 
Maree. said:
I've been giving Liam 2 Ensure's a day to supplement what he is eating.

At the moment Liam's GI isn't sure that there is anything wrong beyond Acid Reflux (as his 2nd calproc test and colonoscopy came back normal so he thinks the high calproc test that made him think Crohn's might have been a lab error. Acid Reflux is being treated with the PPI, until we started to step that down (now stopped trying) his GI symptoms had totally gone away.

His weight losses worry me but I'm not sure this is a valid concern, when we saw GI last on 24/2 (after a week on Motililum and PPI where he'd gain weight) Liam's height was 141 cm and his weight 29.9 giving him a BMI of 15.0 and BMI percentile of 13. As of today his height is 142 cm and his weight is 28.1 (BMI 13.9 BMI percentile <3)

He's lost most of that weight in the last two weeks but during that time he has had two courses of heavy duty antibiotics plus antimalarial tablets, so perhaps the weight loss just relates to the sore foot & the meds and isn't a sign of anything significant.

What I've read about untreated Crohn's flaring is that you get dramatic weight loss, not these small drops in weight? Really not sure if I have any reason to be validly concerned here but ...
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There is no real answer to that question. It is different with different children. If the child doesn't have much weight to lose, it isn't going to be as dramatic. (I'm now putting my bubble-popping pin back away).:emot-cop:
 
I know it is difficult Maree but try not to place too much emphasise on his weight right now. As you have pointed out, there are are too many variables at play...antibiotics and antimalarials, not to mention the fighting off an infection.

Dusty. xxx
 
Just catching up... sounds like you had a fabulous trip!! :D

I also think that the weight loss could be the result of medications, infection, trip, etc. I would certainly continue with the shakes (and, of course, do what we all do best... watch, watch, watch! :lol:) but I wouldn't be overly worried until all else settles a bit. :ghug:

I'm not sure if you're giving him just the Boost shakes but I happened to find a site that gave recipes for smoothies that included the boost shakes as an ingredient along with fruits, etc. Just suggesting in case he starts to get bored with just the shakes.

http://www.boost.com/boost-in-your-life/boost-recipes
 
My 17 year old son was on Augmentin ES for almost a month. That stuff is strong. He too did not have an appetite and lost weight. He was 117 (at a lean cross-country running weight), dropped to 103 and is now up to around 110.

Once he was off Augmentin, within hours, he was eating his new normal amount.

Good luck!

Kimberly
 
Liam has four more days on this course of Augmentin. The foot was checked yesterday and it's still infected but is improving, so fingers crossed won't need another course of antibiotics.

Other than the Ensure smoothies, which I'm still managing to get him to drink (sometimes) he has completly stopped eating. How many Ensure's a day day do you think I should be aiming for if he is not having any other food?
 
I can tell you DS was on 1700 calories at age 7 and 50 lbs when he was no food.

not sure how much for your child.
What does your GI say??
 
Thanks MLP.

I haven't spoken to Liam's GI about the supplementary Ensure's I've been giving Liam. He's not a pediatric GI (I don't think there are any pediatric GI's in UAE working outside Public Hospitals).

His GI hasn't been overly concerned about weight beyond saying to bring Liam back if he loses lots of weight, however his weight does make me uncomfortable which is why I decided to try the supplementary ensures.

I've been wondering if I should find a pediatrician for Liam, to discuss his weight issues with given that his BMI has dropped so low. Feedback from his GP has been not to worry at this point as the appetite/weight issues are probably just a side effect of the antibiotics. So perhaps I should hold off on this to see how quickly his weight bounces once he finishes up on the antibiotic.

Despite the reasurrance and knowing that it probably is all down to the antibiotic, I'm still really uncomfortable with him completely stopping eating. Which is why I was curious about the Ensure volumes needed.
 
Maree - I think supplementing to keep his calorie count is fine too. And yes, everyone is correct that while Augment is VERY effective, it is also a direct GI irritant. I probably wouldn't flip too far out unless his appetite doesn't return to normal after he stops taking it.

Poor little man :-(

J.
 
Maree, I would be aiming for least 3 ensure per day, if that's the only intake.

I would look for a pediatrician.
 
Thanks Catherine. Will see if I can get that into him for the rest of his time on Augmentin. Will ask his GP about a referral to a pediatrician to talk about weight (we are scheduled to see GP again on Wed for next review of foot.)

Carolin -- Liam is 62 pounds. He is 4ft 8 and 10 3/4.
 
Jaedyn is still doing 8 cans/day and she is 34 kg (75 lbs). I believe boys require more than girls. I would consider asking for a referral to a nutritionist. They can help you know how many calories/day he needs, as well as may have some ideas of how to beef him up with foods...
 
try my fitnessmypal
it is free and will let you track how many calories he is truly eating- fat carbs etc....
we used this for ds prior to dx- at one point he ate 2600 calories a day without gaining weight.
so it is important to track so they will know if its an intake issue or absorption issue.

good luck
 
Some days things just go much better than you expect.

Took Liam in to have his foot checked today, hoping to speak to the GP about a pediatrician referral. When we got to reception we found out his GP was sick and huge back log for appointments to see the other GPs. Receptionist asked if it was ok if they got the pediatrician to look at instead as she had a cancellation.

So without a referral we saw the Pediatrician (cost the same amount out of pocket as if we'd seen GP - $13) so I got a chance to tell her directly that I was concerned about his weight.

The pediatrician spent an hour and a half with Liam. She gave him a thorough checking over, looked through his file in detail and asked lots of question. She has ordered a set of blood tests (waiting on insurance approval to get those done) and referred him to a Dermatologist for his rash and to another GI for a 2nd opinion on his stomach issues.
 
Yeah very positive, after a week on Augmentin he really was looking dreadful, so it was probably a perfect time for her to see him for the first time.
 
WOW!!!!!!!!!!!!!!
I think you had fantastic luck! I think most of us wish we had more days like that.
So will she be Liam's new doctor or will you be sticking with the other one?
 
The pediatrician we saw today, said she'd give me a call as soon as gets the tests results to discuss what next, hopefully they'll be something in there that helps workout where to look or what to try next. Will definitely take him back to see her again. I'm also going to take him to see the other specialists that she's recommended to see what they think.

I'm not going to cancel the followup appointment we have with his current GI in 5 weeks time until I see how we go with exploring other avenues. The next followup appointment for his foot is on Saturday with his normal GP.
 
Maree and Catherine, does your family have any other immuno issues other than your kids? Maree, I'm sure you are mentioning your niece in Liam's appts.. Are the docs receptive to the increased likelihood?
 
Maree. said:
What I've read about untreated Crohn's flaring is that you get dramatic weight loss, not these small drops in weight? Really not sure if I have any reason to be validly concerned here but ...
Click to expand...

Johnny's weight loss was extremely subtle. At 9 year check up he was 101 lbs. at 10 year he was 97 lbs and at 11 he was 95 lbs. Keep in mind that kids his age should be gaining about 12 lbs per year. So even staying the same weight over the course of a year is a concern. My son would usually gain 12-14 lbs per year before age 9.
 
For Liam the main things that there are family history of are my side family; Crohn's (Sarah) & Thyroid conditions (lots of cases). From my husband's family Ulcerative Colitis (multiple cases).

Both the Pediatrician & GI we're receptive to the idea of increased likelihood of Crohn's. The Pediatrician has run some broader tests (including thyroid) as she felt that the GP & GI had been too focused on his stomach and there hadn't been enough exploration of other potential health issues which could be causing the problem. All the doctors he has seen so far work out of the same hospital so she was able to look through the complete list of all the tests he's had done to date.

When I raised the issue of his weight with the pediatrician yesterday she checked hi file and said he'd grown 3 inches & only put on 4 pounds in the last year. That the height gain was good but the weight gain was a concern. She then put him on the scales and discovered he'd lot of all that extra weight in the last 3 weeks at which point she decided there was definitely reason to be concerned and gave him a thorough checkup.
 
I have rosacea, ibs and low vitamin b12.

Our mother side, first cousens,
-lupus
-very low vitamin b12 levels tested at under 100 with stomach issues and asthma
 
GP checkup this morning. The Bacterial infection in Liam's foot is gone, but it now has a fungal infection. For now we are trying topical antibiotic and anti fungal cream on the wound. Checkup in a fortnight if the fungal infection doesn't clear up by then the GP said he'll prescribe an oral oral anti fungal medication.

Blood & urine tests ordered by the Pediatrican we're also done this morning so hopefully we'll hear back on those in a few days.

Dermatologist appointment this morning and she's requested insurance approval to remove Liam's Molluscum Contagium as she does not believe will heal by itself.
 
Thanks for the update Maree.

I hope the fungal infection responds to treatment and oral meds aren't required.

Good luck with the results! :goodluck:

Dusty. xxx
 
Thanks for all the updating. Sorry I haven't seen it for a few days. I hope the pediatrician will have a follow-up time after she does her research...
 
Maree,
Just catching up. So glad you were seen by that pediatrician. She seems really on the ball. It is nice to have a proactive doctor for once.
 
Pediatrician rang to say that I can collect the test results this afternoon. She said mostly they are all normal the one exception being that he has a low white blood cell count.

As he's not had any viruses she suggested I ask the GI who she has recommended if this is likely to be caused by his stomach problems. I'll pick up the test results this afternoon and have a better idea then of exactly what was tested and what the results we're.

Is anyone aware whether reduced white blood cell count is associated with IBD?
 
White Blood Cell Count
20 Apr 3.68
16 Oct 5.48
Reference Range 6 - 12 yr old: 5 - 13

Everything else that was tested seems to be within the reference ranges.
 
Augmentin, just looked up the side effects and lowered White Blood Cell count is there. Having a likely explanation does make me feel better.

Will mention it to the GI when we manage to get in to see him (still trying to sort out insurance details). Wondering if I should ask to have this retested in a couple of weeks time to see if it's settled down.
 
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^^^^ I agree Dex!

I'm with Catherine, Maree. :)

I would get a retest, if no other reason than my own sanity!

Dusty. xxx
 
Liam is really struggling stomach pain & reflux are bad, despite it being a full week since he stopped the antibiotic. He is very muddled and emotional and his short term memory is dreadful.

I took him back to the Pediatrican on Wendesday, who sent him to Emergency. The Pediatrician at the hospital decided he needed a full work up and to be seen by a Senior Consultant but that he was stable so didn't need to happen that day. They booked him an appointment to see a Pediatric Neurologist on 5th May.

We have an appointment on Sunday 28th for him to see new Gastroentrologist (who is a pediatric specialist). This specialist isn't on our insurance network so not sure yet if we'll end up paying the full price of appointments with him or be able to get our Insurance Company to reimburse, have been chasing Insurance Company for answer with no response, but have decided we aren't prepared to wait on an answer. If that means we end up out of pocket that's what happens.
 
I don't know anything about your system there Maree but if it's your only chance to see a ped GI, I'd go for it and fight the insurance co. later.

How's Liam's foot?
 
Yeah thats what we've decided to do. As this is the only Pediatric GI our Pediatrician is aware of in country. Even if Insurance company decide not to pay it's worth seeing what he thinks.

The foot seems to be healing reasonable well, still some signs of fungal infection but really hoping that will clear up before we get in reviewd next week.
 
New GI felt sure that it's a nutrient absorbtion problem of some sort and that at this point we need to get to the bottom of it sooner rather than later (so no more waiting). His gut feel is the blood results aren't what he'd expect for Crohn's, felt that his iron levels are too good.

Today he ran celiac tests (have been done before) & liver function tests. He said unless obvious answer in these next step will be upper endoscopy, followed by pill camera & MRI.

On a positive note, despite his recent weight drop, Liam continues to grow today when they measured him he'd grown another centimeter.
 
What test have Liam had done for iron. Is iron studies or just ferritin?

Prior to dx during the last 6 months we were supplementing Sarah iron with the ferritin levels increasing and the hemoglobin dropping.

This is when they decide to test for beta thalassemia, and later they test for alpha thalassemia. Beta was rule out and all common alpha were excluded.

Sarah's ferritin level in December 2011, was 162, she ferritin level was acting as a marker of inflammation. At dx they decided her levels were close zero with ferritin was in normal range.
 
He has not had alpha & beta thalassemia tested.
Liam's Hemoglobin is 12.4 (RR 11.5 - 15.5) & Ferritin 77.45 (RR 7 - 140)

Below Ferratin there is also something called IRON Test Method:photometric Method where his result is 26.2 umol/L (RR 5.5 - 25.8)
 
Pediatric GI rang today to say that blood and stool tests look very normal and to get my approval to book Upper Endoscopy. He is stilltalking about doing Upper Endoscopy follwed by MRI followed by Pill Can but sounds really at a loss at to what is wrong.

He commented that if this was Crohn's he'd expected abnormal blood test results to show long before we had saw level of weight loss.

He's still talking about trialing some sort of broad spectrum antibiotic kill any paresites/bacteria in stomach if nothing shows up on any of the scans.
 
I'm glad to see the GI is being very determined. I'm not sure I like the sound of that antibiotic trial considering the issues Liam had with the ab's for his foot. It's always a roll of the dice it seems. Good luck!
 
I definitely hope we find something on one of the scans.

Augmentin made him Liam sick enough, the idea of giving him something that's stronger or broader in what it hits worries me a lot.
 
Liam has already had a Colonoscopy with biopsies, 2 months ago which which was totally clear.
 
FWIW my son's CRP levels were never very elevated even when he was in full flare and lost 16 lbs in about 3 weeks. I was even told by one ped that it couldn't be Crohn's because his inflammatory markers would be higher...they were wrong. :(

:hang: It is so frustrating to have to advocate so hard all the time
 
Interestingly it was the nutrient levels the GI kept commenting on. That if it was Crohn's there should be signs of anemia and his vitamin D level should be low. The doctor did his pediatric GI training in Canada perhaps all the Crohn's kids there are Vitamin D deficient.

But we live in Dubai and he's a very sporty outdoorish 10 year old, who is way browner than I'm happy with, how could he be deficient in Vitamin D?
 
He still could be low in vit d since crohn's inhibits the absorption of vit d( per one theory)
Or is used in excess due to the increased inflAmmation( another theory)
Either way some are low. DS was borderline low vit d.
 
My son's CRP also was never crazy off, even when his symptoms first went crazy and he dropped 20 lbs. His iron and Vitamin D were low though (and his D continues to be low - during the winter time he was inside alot).

More tests = more answers (crossing fingers!!)
 
Sarah vitamin D levels are consider to be on the low end of normal. The only reason her vitamin d is supplement is due to pred use and the believe the calcium supplements work better when taken with vitamin d.

Two thirds of our GI have very low vitamin d levels, she was surprise at how high Sarah's levels were.
 
Will have a better idea when I see the actual numbers. Clearly the blood work looks too healthy for the level of weight loss but, which is confusing the GI but then I'm guessing for the first 3 years Sarah was sick her blood numbers probably looked great too.

Pete is chasing up on the bookings/insurance approvals today (to make sure all the proper steps in progress.) I'm hoping it won't be a long wait as I've got to the impatient point.
 
The only one off was iron. The ferritin was low normal, haemoglobin low normal, b12 dropping over time but alway in range.

When we change doctors in August 2011, when her ultrasound has already show damage which also appear in the same location on a later MRI (we were told this ultrasound was clear).

Amenia appeared for the first time hemoglobin 106 (110-160)
Ferritin was 30 (30-200)

Two months later after supplements of iron
Hemoglobin 91
Ferritin 71
This caused our detour with testing for thal beta.
At this point Sarah was still swimming 8 times a week.

So blood test pretty normal until 6 months prior to dx. Ferritin levels were consider just to be caused by amount of exercise.

She has now had parent of a friend she met in year 7 say that she never seen she look better in the time she known her. We had a slow decline that we didn't even notice in the beginning.
 
Liam like Sarah is a really sporty kid. He plays football every day at lunch and recess, trains 2 - 3 times per week and generally has one or two matches a week. All done in a really hostile climate.

I like to think (maybe denial but sticking with it for now) that perhaps whatever is wrong with him isn't that servere but is just enough that his body can't cope with the combination of growth & exercise levels. I find it really encouraging to hear how well Sarah is doing with treatment. I'm hoping she'll continue to keep getting better & better and that Liam will follow in her footsteps.
 
Dropped by Liam's GI office to sort out some Insurance details and was able to get a copy of blood tests.

White blood cells back in normal range which is great.

Looking at the test results really don't understand Liam's GI's point about his Vitamin D level being TOO HIGH for this to be Crohn's.

25-OH Vitamin D Total 27.7 (RR Insufficency 10-30 Sufficiency 30-50 Optimal 50 - 100)

He is an outdoorsy child in Dubai who gets lot of sun exposure (is browner than I'm happy with). Plus he currently takes a daily Omega 3 & Cod Liver Oil Supplement liquid (recommended by Pediatrician and it contains 200 IU of vitamin D3. Plus there is also Vitamin D3 in his Ensure, did some rough calcs and he is probably getting another 200 IU of vitamin D3 from there.

Curious to know what other peoples kids Vitamin D levels looks like.
 
We need to work out what scale there using but it seems too low.

My vitamin d tested at 28 which resulted in the gp putting me on 3000mg per day.

Our scale is nmol/L

Sarah vitamin D
August 2010 106
March 2012 60

As you can see if it the same scale Liam's levels are very low.
 
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Full details from the form

25-OH Vitamin D Total 27.7 ng/ml

Ref Ranges shown:
< 10 Deficiency
10 - 30 Insufficiency
30 - 50 Sufficiency
50 - 100 Optimal
> 100 Excess
> 150 Toxicity
 
Ok David the person to ask. Try looking up his vitamin d thread.

The are different scales Liam's levels are not that low.
 
Found a conversion table. I think we are looking at about 68 on the scale you use. So his numbers aren't that different to Sarah's in March 2012 not long aftr she was diagnosed. So looks like Crohn's is still possible with that sort of Vitamin D level.

I'm still suspicious that the reason that Liam's GI expects really low Vitamin D levels is because he did his pediatric GI training in Vancouver where the level of sunlight is very different to what we get on the Arabian Peninsular.
 
I have give lots of reasons why Liam shouldn't be low.
- plenty of sun exposure
- fair skin
- blue eyes

Reasons for low
- sunscreen use
- ?
 
The last time EJ's was tested (April '12) it was 36 ng/mL (25-80). He's a pale kid so he can't stay in the sun too much. We do supplement his vit. D with an otc supp.
 
I don't know if that was for me or Maree but…

as of Dec. 12…. Calcium Blood: 9.1 mg/dL (8.5-10.5)

I also found a more recent D level from those labs… 30 ng/mL
 
It was for Maree, the reason i ask is because of all the thyroid disorders in our family.

Dexky what's you climate like.

Where Maree is it s like summer all year around.
 
Calcium 2.46 mmol/L (RR 2.15 - 2.57)

Catherine's right about summer 365 days a year. It's virtually never overcast here. In mid Winter our average daily hours of bright sunlight gets down to 8. This time of year avg hours bright sunlight is 11.

Liam plays outside every recess & lunchtime plus has 2x 45 minute sports classes and 3 x 1 hour of football training outside per week. I know there incredibly slack about sunscreen at school (so I doubt any of that is with sunscreen.) He also plays out in the yard most afternoons after 3pm I don't worry about sunscreen. I suspect he's averaging close to 2 hrs sunlight most days.
 
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Maree, all it takes to keep a normal vitamin D level is 20 minutes of exposed skin to direct sunlight. Jae's vitamin D was about 27 and we live in Alaska with very little sun exposure. I agree that your doc isn't looking at it from a Dubai perspective. Jae's labs have always been normal except on two occasions when her joints were flaring then her inflammatory markers were a little high. The pill cam is the only test that reasonably showed her Crohn's with inflammation and ulcers throughout - and that was 9 days after upper and lower endoscopy. I think the stress of all the testing finally made it flare enough for confirmation. Keep knocking, keep looking. I hope Liam's tests are more conclusive this time. I can't remember, did he have a fecal calprotectin recently?
 
Liam's Fecal Calprotectin was 694 back in October but the test done in Feb was back totally normal.

New GI doesn't agree with the previous one who said 1st test probably a lab error as too different. He thinks there probably was inflammation back in October.

New GI didn't run fecal calproc in last set of tests, he said it wasn't necessary at this point as regardless of results unless liver or celiac tests showed an obvious problem he was need to run Upper Endoscopy, MRI and pill cam anyway due to Liam's weight issues.
 
Catherine said:
Dexky what's you climate like.

Where Maree is it s like summer all year around.
Click to expand...

Kentucky is fairly moderate. We're not far enough north to have bad winters. We're far enough south to have long, hot summers but not like the deep south.
 
Still waiting on news about insurance approvals for Upper Endoscopy.

Took Liam to the dermatologist this morning:
-His foot is improving but fungal infection not gone, we have a new cream to try for 5 days.
-She removed 3 very small new Molluscum Contagium spots which have appeared in the last week and gave us a cream to put on the worst of the ones that have been treated.
-Next appointment with her 5 days if any redness still in foot otherwise 7 - 10 days to have the MC spots checked again & for her to do a thorough check for new ones.

Feels like progress on the foot/rash front but it is painfully slow progress.
 
Just catching up.

I'm glad you're finally moving towards getting some answers.

Is there a clause in your insurance that states that if there is no specialist in your network (ped. GI), that it would be covered?

Best of luck. I'm sorry your son is in so much discomfort.

Hugs to the mommy!

Kimberly
 
As well as the specialist not being on our network. He does endoscopies at a hospital where we only have partial coverage so we are waiting to see if the insurance company will cover the hospital costs (not just issue with the specialist costs, which I think there is a good chance they'll cover some of).

The hospital he uses has a small set of insurance companies that provide full cover, compared to most private hospitals here (this is the only hospital I'm aware of where we aren't fully covered). So I'm guessing there fees are comparatively high too.
 
Colonoscopy & Upper Endoscopy scheduled for tomorrow morning.

Different GI & different prep scheduled, which we don't like at all. Split across day before and day of precedure.

Clear liquid diet from lunchtime.
Fleet at 5pm
Dulcolax at 6pm
Fleet at 5 am
Check in at hospital at 7:30, GI said if needed they will do a enema at hospital to finish cleanout.
Procedure scheduled for 9:00

Liam's last prep was just two doses of Fleet but medications started earlier in the day.
With the last prep he had diarhear after first dose of Fleet which got intense following 2nd dose.

This time around we are at 1:45 am currently he had two BM during the evening both still formed. Really starting to feel concerned that this isn't going to work.
 

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