After our last GI appt., Dr. said my son's bone mineral density from his dexascan in November was low so she wanted to repeat it. The Zscore at that time was -6.6. I just got results and his Zscore now is -2.6. I'm not sure how to interpret these results.
Dexascan results? How to interpret?
- Thread starter Jelly loves Peanut butter
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I think it's better. That is a pretty low score if I'm remembering correctly. Did they diagnose him with osteoporosis?
Does he see a nutritionist? When my daughter was found to have low bone density, we were immediately sent to a nutritionist and had to up the amount of formula she was drinking. We also added Calcium supplements I think.
She had osteopenia, but I can't remember what her Z scores were. Not as low as your son's though.
After two years of tube feeding and PT (weight bearing exercises help), and after she gained 25 lbs (she had been severely malnourished), her bone density is almost normal. It's still a tiny bit low in one area (her spine) but is otherwise good.
I would discuss the results with your GI - ask how low his Z score is, what it means and how it will be treated.
Is he currently drinking any sort of formula - like Boost, Ensure or Pediasure?
Does he see a nutritionist? When my daughter was found to have low bone density, we were immediately sent to a nutritionist and had to up the amount of formula she was drinking. We also added Calcium supplements I think.
She had osteopenia, but I can't remember what her Z scores were. Not as low as your son's though.
After two years of tube feeding and PT (weight bearing exercises help), and after she gained 25 lbs (she had been severely malnourished), her bone density is almost normal. It's still a tiny bit low in one area (her spine) but is otherwise good.
I would discuss the results with your GI - ask how low his Z score is, what it means and how it will be treated.
Is he currently drinking any sort of formula - like Boost, Ensure or Pediasure?
Hi Maya, no he has not been diagnosed with osteopenia or osteoporosis. We saw a dietician early in his crohns dx but not lately. I sent a message on Mychart to dr. So I am waiting to see what she says and if he should start calcium. I wish dr. Told me in November when he had the first scan, I could have started calcium then and maybe this current dexascan would've had better results. I feel like I have been on top of everything and researched as much as I could and now this! 
I'll let you know what dr says. And thank you so very much for your ALWAYS timely response!
I'll let you know what dr says. And thank you so very much for your ALWAYS timely response!
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Not just calcium
Formula
Pedisure/kids boost -whole protein
Peptide
Peptamen Jr both semi-elemental
Or
Neocate /elecare -elemental
Calcium alone is hard to absorb
Semi elemental formula or elemental formula are absorbed more readily
Crohns kids have a hard time absorbing nutrients due to damage /inflammation to the intestines
Formula
Pedisure/kids boost -whole protein
Peptide
Peptamen Jr both semi-elemental
Or
Neocate /elecare -elemental
Calcium alone is hard to absorb
Semi elemental formula or elemental formula are absorbed more readily
Crohns kids have a hard time absorbing nutrients due to damage /inflammation to the intestines
Thank you MLP. Would the calcium be hard to absorb if he has been symptom free since January ? Last fecal cal a few months ago was normal. ESR and CRP are still high but thinking from his arthritis as he is still having arthritis symptoms. Thank you
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Generally, kids with IBD do better with formula - it is absorbed much more easily. Is he in remission (shown by scopes)? That is different from symptom free.
That said, my daughter was put on calcium citrate and vitamin D in addition to formula when her first Dexa scan came back low. But until she was a healthy weight and was able to maintain that weight, she stayed on formula. She has only very recently taken a break from tube feeds.
My daughter's Z scores were definitely not as low as your son's and we were sent to a nutritionist ASAP. Her GI was very concerned.
Many GIs like kids to stay on formula to help with growth and weight gain, even when they're in remission. Bone density continues to increase till the early 20s, and then it stops, so it's important to increase his bone density now.
Weight bearing exercises also help. Unfortunately, the usual exercises for kids with arthritis - low impact, things like swimming and biking - do not help with bone density. But walking does.
For kids with arthritis, sometimes inflammation can also decrease bone density. Here is an article about that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3043287/
Some studies show that anti-TNFs can increase bone density in kiddos with arthritis. Has your son started Remicade yet?
I would check with your GI on specific instructions.
That said, my daughter was put on calcium citrate and vitamin D in addition to formula when her first Dexa scan came back low. But until she was a healthy weight and was able to maintain that weight, she stayed on formula. She has only very recently taken a break from tube feeds.
My daughter's Z scores were definitely not as low as your son's and we were sent to a nutritionist ASAP. Her GI was very concerned.
Many GIs like kids to stay on formula to help with growth and weight gain, even when they're in remission. Bone density continues to increase till the early 20s, and then it stops, so it's important to increase his bone density now.
Weight bearing exercises also help. Unfortunately, the usual exercises for kids with arthritis - low impact, things like swimming and biking - do not help with bone density. But walking does.
For kids with arthritis, sometimes inflammation can also decrease bone density. Here is an article about that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3043287/
Some studies show that anti-TNFs can increase bone density in kiddos with arthritis. Has your son started Remicade yet?
I would check with your GI on specific instructions.
I sent message to GI and rheumo. GI said continue vit D, no extra calcium needed. Rheumo said add calcium with vit d. 
Maya, I guess I don't really know if my son is in remission. He only had his initial scopes in 9/2016, MRE in 10/2016. I thought symptom free and normal fecal cal meant remission. Yes he started his remicade yesterday with no side effects. Two IV sticks though so he really cried a lot. They used a cold spray first on his skin so it helped but when the first nurse started moving the needle back and forth is what caused the tears. Weird thing after he gave a urine sample and the color was milky light yellow, so cloudy you couldn't even see through it! Even the nurses were shocked! Came back no uti, dr said there was a lot of phosphorus causing the color, maybe from MTX, said to drink more water.
Thank you for the article; I always like to read and learn whatever I can.
Maya, I guess I don't really know if my son is in remission. He only had his initial scopes in 9/2016, MRE in 10/2016. I thought symptom free and normal fecal cal meant remission. Yes he started his remicade yesterday with no side effects. Two IV sticks though so he really cried a lot. They used a cold spray first on his skin so it helped but when the first nurse started moving the needle back and forth is what caused the tears. Weird thing after he gave a urine sample and the color was milky light yellow, so cloudy you couldn't even see through it! Even the nurses were shocked! Came back no uti, dr said there was a lot of phosphorus causing the color, maybe from MTX, said to drink more water.
Thank you for the article; I always like to read and learn whatever I can.
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Poor little guy 
. IVs do hurt. Have you ever tried Buzzy?
https://buzzyhelps.com
My girls swear it helps for IVs, blood draws and even certain shots (it doesn't do a whole lot for Humira since it's the med that burns and not the needle that hurts). We have also found that numbing cream works better than the freezing spray.
Some hospitals also have J-tips but we have no experience with them. I think Mehita's son used them.
For the first few infusions, it might help to have a reward after the infusion - a favorite movie to watch, a favorite dessert - that kind of thing. We did chocolate after Humira shots - that really helped.
. IVs do hurt. Have you ever tried Buzzy?https://buzzyhelps.com
My girls swear it helps for IVs, blood draws and even certain shots (it doesn't do a whole lot for Humira since it's the med that burns and not the needle that hurts). We have also found that numbing cream works better than the freezing spray.
Some hospitals also have J-tips but we have no experience with them. I think Mehita's son used them.
For the first few infusions, it might help to have a reward after the infusion - a favorite movie to watch, a favorite dessert - that kind of thing. We did chocolate after Humira shots - that really helped
.
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Glad that you were able to start Remicade, but I'm sorry to hear that the IV placement was difficult. My 15-year-old daughter hates needles and IV's, so we pretty much always have tears, unfortunately. Some things we do to try to make things go as well as possible:
--make sure she's well-hydrated starting 24 hours before the infusion
--put lidocaine cream on her arm an hour before the infusion
--put a heating pad on her arm as soon as we get to the center (hot packs work too)
--request that our favorite nurse put in the IV, even if she's not the nurse assigned to us for the rest of the infusion (which she's willing to do, because she's awesome)
--use a Buzzy as the IV is being put in
--have a new show or movie running on the ipad as the IV is put in
--bring favorite foods along
Hope the next infusion goes really well for him, and that they get the IV right away.
--make sure she's well-hydrated starting 24 hours before the infusion
--put lidocaine cream on her arm an hour before the infusion
--put a heating pad on her arm as soon as we get to the center (hot packs work too)
--request that our favorite nurse put in the IV, even if she's not the nurse assigned to us for the rest of the infusion (which she's willing to do, because she's awesome)
--use a Buzzy as the IV is being put in
--have a new show or movie running on the ipad as the IV is put in
--bring favorite foods along
Hope the next infusion goes really well for him, and that they get the IV right away.
A Z score is how many "standard deviations" from the mean, or average. If you are between -2 and +2 Zscore you are usually considered normal, in the middle 95 percent of the population. If you are at -2 SD it means you are at about the 2.5 percentile (less than 97.5% of people in your age/sex...). If you are at -3SD, it means you are at the .13 percentile.
Now it's important that the person is compared to others of the same age and sex using the same machine, technique and body location.
How old is your child?
Now it's important that the person is compared to others of the same age and sex using the same machine, technique and body location.
How old is your child?
Xmdmom, my son is 10 years old. He had the scan at Childrens Hospital.
A children's hospital should know how to compare a patient to "norms" correctly. In any case, going from -6.6 to -2.6 is moving in the correct direction.
How much vit D is he on and have they checked levels? Does his diet have much calcium in it? Dairy?
How much vit D is he on and have they checked levels? Does his diet have much calcium in it? Dairy?
He takes vit d 2000units daily, has about 3 dairy per day. Had level checked about 1 month ago and it was good . Also, looking back at his blood calcium levels, those are within normal range each time. Should I give him calcium supplement if blood levels have been normal for months? Thank you Xmdmom!
I can't advise re: calcium supplements or any medical treatment . I wouldn't read in too much to a normal serum Calcium. One's bones could need calcium and have a normal serum level. I would ask his doctor.
Levels of vit Ds are controversial. I would find out what his level was and what the normal levels are (for that lab). [There is data to suggest that vit D therapy may help treat Crohn's; vit D deficiency is associated with higher IBD disease activity and supplementation with vit D is associated with lower risk of relapse. Review article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4009525/
Some doctors think that it's good to have vit D levels that are in the upper 1/2 of the normal range for improving IBD inflammation but others are happy with anything in the "normal range". The review article (link above) says "says "Recent studies have suggested that optimal targets for serum 25-OH vitamin D levels are greater than 30 ng/mL (75-80 nmol/L), with levels between 21-29 ng/mL (51-74 nmol/L) being defined as insufficient and levels < 20 ng/mL (< 50 nmol/L) being defined as deficient[60]."
Also, if your son is very short or small boned, it could possibly affect the Dexa reading when they compare it to "norms".
Levels of vit Ds are controversial. I would find out what his level was and what the normal levels are (for that lab). [There is data to suggest that vit D therapy may help treat Crohn's; vit D deficiency is associated with higher IBD disease activity and supplementation with vit D is associated with lower risk of relapse. Review article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4009525/
Some doctors think that it's good to have vit D levels that are in the upper 1/2 of the normal range for improving IBD inflammation but others are happy with anything in the "normal range". The review article (link above) says "says "Recent studies have suggested that optimal targets for serum 25-OH vitamin D levels are greater than 30 ng/mL (75-80 nmol/L), with levels between 21-29 ng/mL (51-74 nmol/L) being defined as insufficient and levels < 20 ng/mL (< 50 nmol/L) being defined as deficient[60]."
Also, if your son is very short or small boned, it could possibly affect the Dexa reading when they compare it to "norms".
