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Crohn's Disease Forum » Parents of Kids with IBD » When do they worry about weight loss?


 
03-15-2013, 10:35 AM   #1
Devynnsmom
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When do they worry about weight loss?

Devynn had her pediatrician appt on Wed. The results of her lactose intolerance test came back normal. But the ped asked how she's been doing with dairy. I told her any time she has milk (only a few times, last time in a milk shake) she gets stomach pains, gas and diarrheah for a few days. Cheese is kind of hit and miss, pizza is no good unless its home made, and yogurt is hit and miss. She said even though the tests say she's not lactose intolerant, it sounds like she is. She was a little concerned at her weight. She has grown an inch in 4 mos, but has lost almost 2 kilos in less than 2 mos. She wants to see her in four weeks to monitor her weight.
The last month has been rough on her, with the problems with the girls at school. We are on March break right now, and she has been feeling pretty good. Although her appetite still isn't normal for her. She said the last few days before break, everything seemed to be getting back to normal at school. I'm really hoping things settle down and she can be back to her happy self.
I know weight loss is not good, but when do they start to worry? The ped was going to give us a few samples of the shakes (pediasure I think) but they have milk products, so she said to wait for now.
She looked at her feet, and couldn't believe it. I told her they look good now! The skin has peeled off, but they are not red. I also told her about the mouth ulcers, which are gone now of course. She said if either happens again, call and they will fit her in.
*sigh* does it ever end? Does it ever slow down? I just want my girl to be symptom free. I want her to feel *normal* for once. No stomach pains, no joint pains, no skin peeling, no mouth ulcers, and not having to run to the toilet constantly.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
03-15-2013, 11:19 AM   #2
Jmrogers4
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I'm pretty sure the Pediasure Peptide that Jack drinks is lactose free. The bottle says suitable for lactose intolerance. James my lactose intolerant child drank one on a dare from his brother and no problems for him.
Hope it was just stress and she is back to eating, gaining weight and being healthy.
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Mom to Jack (18) dx Crohn's 2/2010
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Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-15-2013, 11:22 AM   #3
my little penguin
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Boost kids is also lactose free and soy free and over the counter
Peptamen jr is also lactose /soy -free
When DS started to lose weight we had to have weigh ins every two weeks even with shakes to make sure he started to maintain and then that he started to gain back what he had lost .
Good luck
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03-15-2013, 01:00 PM   #4
Devynnsmom
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Thank you Jacqui we will look into those! I hope so too. She seems to be feeling better *fingers crossed*
03-15-2013, 01:02 PM   #5
Devynnsmom
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Thank you Mylittlepenguin, the dr did seem concerned, but I guess if she was really concerned she would have told us to come back sooner. That has to be good.. I hope! lol
03-15-2013, 02:19 PM   #6
Farmwife
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Start thinking.............

What can you say no to if she doesn't drink so many shakes a day.

Of course she is old enough to try to tell her....hey kid you need to grow and develop.
If you don't you'll notice your friends change and you MIGHT stay the same. Now is the time to take this seriously.
I don't know, would either one of those work?
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03-15-2013, 03:04 PM   #7
crohnsinct
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Well I wouldn't necessarily worry but an almost 4 pound drop in weight along with vertical growth would have our GI watching closely. The height and extra bone mass etc should translate to a gain so even staying the same would have him scratching his head. BUT the vertical growth is always a good sign that things are getting absorbed.

Our GI has this scale. He will tell us I am concerned not worried or worried not scared. He is funny that way. I think given her stress etc he would be concerned and watching for other signs before he hit worried. Takes a lot to worry him. They even told me once blood is the only thing they get a little excited about. So if everything else is looking o.k. I would just try to watch the appetite and make sure she is keeping up. A lot of things could be coming in to play with a girl her age.

The girl drama just kills me!!!!! She is so adorable and obviously full of spunk. That picture of her makes me smile every time I see it. Why on earth would anyone want to bother her or anyone else for that matter! GRRR!

Poor thing probably isn't helped with the lacrose intolerance and items that include it also carry a good number of calories. Do you know if the drop corresponds to when she dropped lactose? Maybe that is it?
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Daughter T dx 1/2/15 at age 11
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03-15-2013, 06:15 PM   #8
kimmidwife
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It is good your doctor was on top of it. My doctor didn't even bring it up. I was the one who had too. Sigh, I wish they had better doctors down here but we are stuck at least for now. I think the issue with our doctor is we don't see her at her main office and she only goes to the secondary office once every two weeks so when she isn't there things are off her radar. For example she only this week asked her assistant to get caitlyn scheduled for the pill cam when we saw her several weeks ago and she said she was going to get it set right up.
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Retried Remicade Dec 11
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New secondary diagnosis: Gastroporesis Dec 2013
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03-15-2013, 06:15 PM   #9
Devynnsmom
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Oh no, she would have no problem drinking the drinks (I think) but the ones the dr had, had milk products. We just have to find lactose free She is developing (O.M.G. I'm NOT ready for this) and is growing, just not sure about the weight loss.
03-15-2013, 06:19 PM   #10
Devynnsmom
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crohnsinct, hmmmm we stopped milk and milk prod in Oct, but she had still put on weight at her last appt at the end of Jan. I really think its the stress of whats been going on at school. But she is def growing and developing (too fast) so we will just keep a close eye on her weight. Her appetite hasn't been great since the problems with these girls, and that has prob been about 5 weeks now. She usually eats really well. Lately, just no appetite.
03-15-2013, 06:20 PM   #11
Devynnsmom
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Kim, yes this doctor seems to really be on top of things. She doesn't seem like she will let anything slide. She also told me to bring her in ASAP if she gets any new mouth ulcers or the skin on her feet starts to peel again.
03-15-2013, 06:26 PM   #12
Farmwife
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Devynnsmom,
Sorry I missed it. What caused her feet to peel?
03-15-2013, 07:00 PM   #13
Devynnsmom
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Farmwife, they have no idea. Her ped says its from the IBD, and her IBD nurse (who hasn't seen it) said its hand, foot and mouth disease. It is def NOT hand foot and mouth. She's had this happen twice before, and both other times her GI dr was too busy to see her. We've now changed dr's and although the IBD dr couldn't fit her in, the ped said she would fit her in if it happens again. It starts off looking like a water blister, but without water and then the skin just sloughs off. Its extremely painful.
03-15-2013, 07:04 PM   #14
Farmwife
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Do now your getting old when......
When you ask a forum friend a question and have to scroll up to see what you asked because you forgot.

Sounds painful! Does it only happen when in a flare?
03-15-2013, 07:13 PM   #15
Devynnsmom
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lmao!! I don't know, I would say yes.. but I don't think she's flaring right now. I think she's stressed because of whats going on at school, and maybe thats affecting her? IDK... the last two times, she was def flaring.
03-15-2013, 09:28 PM   #16
upsetmom
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How long do these "blisters" last....my daughter has had the same problem but on her fingers. It started the other day and we haven't had a chance to see the DR yet. It's weird because they look exactly like blisters but with nothing in them. I've told her not to peel them.
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03-15-2013, 09:40 PM   #17
Brian'sMom
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What about your GI referring you to a dermatologist? I think they would know more on the peeling.
I hear ya on the "When does it ever slow down...be symptom free..." And your sweet daughter doesn't need added stress from school for sure, my heart goes out to her
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03-15-2013, 09:43 PM   #18
Devynnsmom
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Upsetmom, they don't usually last long.. maybe a day or so and then the skin just kind of falls off. Its really weird and really gross.
03-15-2013, 09:44 PM   #19
Devynnsmom
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Kathy, we went to the derm and they had NO clue. They said it could be IBD related. *sigh* I have no idea.
03-15-2013, 10:34 PM   #20
my little penguin
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DS gets that as well- skin peeling between his fingers and more recently on his heels of his feet.

Gi and Rheumo both saw it- and went ...huh
They know he is seeing a new dermo soon since he has alot of skin issues since starting remicade.
But he had some skin issues before remicade ( sigh...)
03-15-2013, 10:44 PM   #21
Twiggy930
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Boost and Ensure are both lactose free. They have casein (milk protein) in them but not lactose. We have restricted dairy products that contain lactose for my son and it seems to help. He still drinks lactose free milk (it tastes funny so he will only drink it if it has Milo in it), hard cheeses and lactose free yogurt. If he wants ice cream or some soft cheeses I give him a lactaid pill although I try to avoid having him eat anything with lactose.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-15-2013, 11:06 PM   #22
Devynnsmom
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mlp, I'm thinking we should try a different derm. Maybe the hosp can send us to one.

Twiggy, thank you Devynn drinks almond milk. She loves cheese and yogurt, and they are usually ok.. sometimes she gets a bit gassy.
03-16-2013, 12:06 AM   #23
CarolinAlaska
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Probably concerned about the weight loss now...that is why it is being monitored. Weight loss is more concerning however when it goes together with growth failure. I personally think that your GI doc would be more concerned than "come back in a month". It would probably flag a need for a change in plans or at least a closer follow-up. Sorry your dd has to go back to school tomorrow. I hope things are calmed down now and that the girls get along better...
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03-16-2013, 04:03 AM   #24
Sascot
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Was thinking about weight loss myself. Not sure when to worry either. My son is looking a little thin to me (he never lost weight before, even before diagnosis) - I'm sure I can see his ribs outlined a little. However the GI nurse didnt' seem to think it necessary to weigh him - only goes in June for the clinic weigh in .
As for the mouth ulcers/feet peeling - definitely not hand, foot and mouth. My daughter had it and it was awful but it is defined blister-like spots and they don't peel.
Glad she is feeling a bit better now.
03-16-2013, 09:15 AM   #25
Devynnsmom
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Thank you Carol, I hope things have calmed down too. I'm thinking because she grew an inch they aren't as worried. Hopefully when we go back in a month she will have put a few lbs back on.
03-16-2013, 09:18 AM   #26
Devynnsmom
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Thank you Sascot, my older daughter had hand foot and mouth and no, def nothing like what Devynn has had. I also work in a daycare and have seen it there, nothing like what Devynn has had. I've even sent them pics.. Devynn's dr's weigh her at every appt. She's always up, even if just a tiny bit. This is the first time she has ever been down. But she does seem to be feeling better. School is back on Monday, we'll see how things go. Her dr gave her some stuff to read about bullying, how to handle it etc.
03-16-2013, 10:01 AM   #27
Brian'sMom
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I agree that the GI shouldn't just say, see you in a month. Especially since the blisters are painful. They should try to help refer you somewhere. I must've missed earlier, why are they bullying her? So mean considering what she's already dealing with having IBD. Girls that bully are sooo insecure with themselves...always why they travel in bunches! I can't stand bullies!!!
03-16-2013, 10:09 AM   #28
Devynnsmom
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The blisters are gone, they have broken and are healing. They were not actually blisters, it looked like blisters but there was nothing inside and they peeled within hours. She has to go back for a weigh in. We're not really sure why the bullying, 2 of these girls used to be very good friends. My guess is its because she's been playing (I hate saying hanging out lol) with a different girl lately and the other girls are jealous. But, with 11 year old girls.. who knows. But it better have stopped. I've been in to the school to talk to the teacher and principal so if its still going on I will go above the principals head. She said the last few days before break, things seemed better. So we will see
Edited to add- this is her ped, the GI isn't concerned at all. Well, she might be when I tell her she's lost weight. But she's not concerned about her feet.
03-16-2013, 10:16 AM   #29
my little penguin
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Definitely let the GI know about the weight loss.
DS had weight loss but that was prior to dx.
He is weighed and measured at each visit for every doc.
all docs work together so it goes on one chart so they can see.
03-16-2013, 10:18 AM   #30
Devynnsmom
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I def will mlp. Her GI and ped send each other all results etc. Her ped was actually the one to suggest trying her on the Sulfasalazine. She has prob already sent the GI a note about the weight loss, but I am going to email her as well.
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