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09-22-2013, 12:03 PM   #61
Maya142
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Could your daughter start drinking Peptamen or something similar? My daughter who is 16 grew half an inch this year after she began supplementing with Peptamen jr. We thought she was done growing so it was a nice surprise!
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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
09-23-2013, 12:48 AM   #62
Patricia56
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I'm under the impression that the alk phos reading is just a handy way of saying - look this kid is growing! Elevated alk phos is associated with growth. As far as I know (not a doctor) alk phos doesn't cause poor growth it's just a rough indicator of growth. I know the rise and fall of alk phos definitely fit my son's growth.

I expect alk phos levels are associated with a lot of other things I don't know about. I just know my son's doctors always told me that the elevated alk phos was because he was growing. He never had very low levels as I recall.

So here's my understanding regarding growth (just a mom not a ped endocrinologist OK?):

1. You need to view growth over a long time span, preferably 2 years.
2. That said, a total failure to grow in a year is unusual.
3. Kids typically grow the most during spring and summer.
4. Average growth for children is 2 inches/year
5. Pre-teens begin to grow more rapidly (as a general rule) with girls having peak rate of growth earlier than boys. Most girls have gotten most of their height by age 14. Most boys have gotten most of their height by age 16
6. From a CDer perspective, three things influence growth:
*inflammation
*nutrition
*use of corticosteriods
7. When inflammation is not under control a teen with CD is unlikely to grow and may even have delayed puberty
8. When nutrition is not adequate either due to inflammation/scar tissue or to inadequate intake to make up for previous malnutrition then growth may be slower or delayed
9. When steroids are used - both Entocort and Prednisone - growth stops until the steroid is stopped. (As a general rule)
10. When all three are present then your child is probably not going to grow
11. For reasons that are not well understood boys with CD tend to be shorter than their expected height and have delayed growth even when in remission
12. Age is not necessarily the best measure of potential for growth. Bone age xrays (which should be interpreted by a pediatric endocrinologist) may show that bone growth is delayed leaving room for catchup growth once the child is in remission. Serial bone age xrays are most helpful in analyzing growth patterns. Usually one every six months to once a year.
13. Catch up growth often requires liquid formula supplementation as it usually takes 2x the number of calories the child would need if he/she were normal or expected weight/height. So if your child weighs 100# and the normal average weight for a child that age was 120# then you need to feed your child the amount of food they would eat if they were 120# times two. Or so we were told by the IBD dietician.
14. Weight usually comes before height once the child is in remission and off steroids.

Questions?
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 09-23-2013 at 01:06 AM.
09-23-2013, 11:23 AM   #63
DanceMom
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Labs are done....so now we wait. This is the worst part! lol
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
09-24-2013, 11:02 AM   #64
DanceMom
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GI emailed this morning and we have to stop 6-mp immediately. I'm pretty bummed. We will retest in 2 weeks and if liver numbers are down then scope the next. So hopefully scopes in 3 weeks. Not sure how the recent Prednisone will affect that but I don't like the idea of her being on only Pentasa for a great length of time. Based on the scopes he will choose the appropriate medication for her. At her last appointment he said Remicade would be next on the list but maybe he has something else in mind now. Not sure. The waiting is what I hate.....
09-24-2013, 02:02 PM   #65
DanceMom
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Here are her actual results.....

Bili, total 1.8 (.2-.8)
Alk Phos 77 (184-415)
AST 92 (12-32)
ALT 327 (8-24)

This seems REALLY bad to me. Is she at any risk for true liver damage? Will other medications, specifically Remicade, affect her liver in this way? Why can't she seem to tolerate the 6-mp?

I'm just in a bit of a shock her numbers were this high.....
09-24-2013, 02:39 PM   #66
Patricia56
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The ALT is pretty high but not as high as it could be (as in >2,000).

Remember, the liver is a remarkable organ. It can heal itself with time, should there be any damage - which might not be the case because she's been monitored closely and taken off the drug promptly.

Some people just can't metabolize 6-MP normally and more of it gets metabolized into a damaging metabolite than into the desired one. It has to do with the enzyme pathways and it's just a matter of genetics with 6-MP.

I haven't heard that Remicade poses a problem with the liver but I am not up on the latest research on it. Probably MLP will come along and give you some answers about that.
09-24-2013, 03:29 PM   #67
Mehita
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Sorry to hear about the labs, but very glad your GI is on top of things and pulled her off. I'd be a little nervous with just Pentasa too.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-24-2013, 04:10 PM   #68
DustyKat
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Oh DanceMom...

Ditto to what Patricia said. Thiopurines just aren't the drugs for some but that doesn't mean that the biologics won't be just fab for your lass.

Sending you mega loads of luck and well wishes that A does well in this transition period mum. Maybe dropping off the 6mp may ease some her symptoms? I hope so!

Dusty. xxx
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09-24-2013, 06:34 PM   #69
my little penguin
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FWIW DS had similar ALT numbers for 6-mp.
He has not issues with Remicade or humira at all in terms of ALT/AST.
His body just didn't like 6-mp for whatever reason.

Good luck on your scope.
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Last edited by my little penguin; 09-24-2013 at 07:11 PM.
09-26-2013, 11:01 AM   #70
DanceMom
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A is hanging in there! She thought she saw some blood this morning but fingers crossed it was undigested food! I have noticed her making more urgent trips to the bathroom but that does happen from time to time and then passes. Overall she feels "pretty good" and has carried on with her normal activities this week. We do Disney tomorrow so hopefully things continue to go well!
09-26-2013, 03:55 PM   #71
DustyKat
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Thanks for the update DanceMom!

Wishing and hoping more than anything that A stays feeling pretty good and you all have a brilliant time at Disney!!!

Happy Disney!
Dusty. xxx
09-28-2013, 05:05 PM   #72
DanceMom
Senior Member
Disney was awesome! We did get the GAC and it was a lifesaver! The only issue we had was the rude girl that didn't seem to want to give us one. All other cast members were very accommodating and we zipped to the front of most lines. A rode in the stroller all night and was exhausted. She just wasn't her happy energetic self. We ended up in the bathroom more times than I can count, with either explosive diarrhea or "false alarms". We refused to let it ruin the magic though. A has become my sarcastic and witty little 8 yr old so she just laughs most things off. Hoping next year's trip doesn't require a stroller and so many bathroom trips though!
09-28-2013, 05:18 PM   #73
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Glad you had a great time. . Sounds like you all need a holiday to recover from your holiday!

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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!
09-30-2013, 05:50 AM   #74
DanceMom
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Oh no! My youngest daughter is sick with a fever, body aches, headache, and stuffy nose! Keeping her and A separate and hoping for the best!!
09-30-2013, 06:00 AM   #75
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Prayers and Hugs this passes quickly and A manages to avoid getting sick!!
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
10-01-2013, 03:39 PM   #76
DanceMom
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Scopes scheduled for next Thursday with a follow-up appt on the 22nd. Hoping she maintains until then! Labs tomorrow to check liver numbers but he wants to scope regardless. We seem to have an early outbreak of the flu here so hopefully I can keep her healthy. My other daughter is much better so she definitely didn't have the flu. Now to occupy my mind until the 22nd....lol
10-01-2013, 04:37 PM   #77
positivemum
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So glad you got the pass at Disney as it was a lifesaver for us too when we went in May this year
10-01-2013, 07:56 PM   #78
DanceMom
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Just got lab orders and saw that the associated diagnosis is "hepatitis". Yikes! Also noticed a new test - prothrombin time. Anyone had this one before?
10-01-2013, 09:06 PM   #79
Mehita
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Are they just checking her for Hep antibodies maybe? When we thought DS was heading down the Remicade road, that was one of the prelim tests.
10-01-2013, 09:20 PM   #80
DanceMom
Senior Member
I have no idea. Usually the labs say- Associated Diagnosis: Crohn's Disease. This set said "hepatitis". All I was told was that he wanted to scope next week regardless of her liver numbers. Not sure why, but next week is convenient for us so we are going with it.
10-01-2013, 09:30 PM   #81
Patricia56
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Hepatitis simply means inflamed liver. It's a rather general term for the liver is sick. No worry - just the coding he's using to cover the reason for repeat labs.

PT is a measure of how quickly her blood clots. This may be a standard test your doc does before scopes, just to be on the safe side. Or he may have a reason to suspect her clotting rate is not normal. CDers are prone to blood clots - as if you didn't have enough to worry about!
10-02-2013, 09:56 AM   #82
DanceMom
Senior Member
I know Patricia. But to see "hepatitis" in print is a little shocking, that's all. The first few times I saw "Crohn's Disease" I cringed too. Something about seeing it written makes it more real.

Labs are done, just waiting on results. You all know I don't wait very well! lol
10-02-2013, 11:59 AM   #83
Patricia56
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Who does? Hope all is well.
10-03-2013, 09:09 AM   #84
DanceMom
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Good news! Liver numbers are much improved and the doctor is pleased (as am I)! Globulin is low again, as are lymphocytes. MCV and RDW are still elevated. So things aren't perfect just yet but we are headed in the right direction!
10-04-2013, 10:55 AM   #85
DanceMom
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Just wanted to add that we finished Prednisone this morning! Felt like this day would never come! lol

Overall, A is doing pretty well. I expect the scopes and prep to be a breeze and they probably won't find much on the biopsies. Just taking things day by day and thankful that today is a good one!
10-04-2013, 02:44 PM   #86
CarolinAlaska
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Congrats on getting off the pred. We have about 8 days left (hopefully) and Jae will be off of it... Congrats on the good results. Regarding the prothrombin time - sometimes liver inflammation will increase the risk of bleeding - the PT will show whether that is the case... I think it was just a precautionary/screening lab.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
10-04-2013, 04:38 PM   #87
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Great news Dancemom!!

So happy to hear your girl is doing better. It is certainly a process with lots of ups and downs, but it sounds like you are on your way there!
10-05-2013, 02:03 PM   #88
DanceMom
Senior Member
I should know that things won't always be so cheery. Today has been an awful day. A is hateful and angry and miserable to be around. I'm assuming this is from the lack of prednisone. It is just so unlike her. And by chance I happened to walk in and see her BM and it broke my heart. It was green, slimy, and covered in bloody clumps. Her response - "Ya, that's what they look like now. My stomach doesn't hurt though so it's all good." I just need to pout a little bit because my bubble was burst so quickly and then I'll be able to carry on and smile. Our Take Steps fundraising has kept us very busy and Monday we have a fundraising night at Chick-fil-a. I'll be ready to smile by then.
10-05-2013, 02:49 PM   #89
my little penguin
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Hope the scope gives you a clear path
10-05-2013, 04:18 PM   #90
DustyKat
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Thinking of you DanceMom and sending loads of squishy hugs your way.

Dusty. xxx
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