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DanceMom

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Feb 17, 2013
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A's GI called Friday evening and asked for an update. She's done considerably well the last few days, even with starting back to school. Our only real problem now is the raging heartburn she gets. She still fatigues easily but even that is improving.

Because she's doing so much better he agreed that we could start tapering the Prednisone! Hallelujah! We started Friday night, and will decrease by 5 mg/week. Saturday morning I noticed a definite change in mood but we can deal with that. She's had 1 enormous BM but that does happen from time to time. I'm just holding my breath until she is completely off the Prednisone! Praying for no hiccups!

We are also tapering the Neurontin and will be done in a few days. It just didn't seem to be very helpful for her and GI agreed we could stop. Bentyl and Zofran provide the best relief for her so we'll stick with that. We are also increasing the Prilosec to 20 mg twice a day until the Prednisone is done.

Labs to be done in a few days. Hoping we hold steady with no complications!!
 
Yipiee ! I know how exciting it is. Take it slow, slow, slow. We actually started with 5mg taper then went to 2.5 mg, tablets were easy to split, took twice as long but it seemed to work, we have only had one small hic up so far. Good luck.
X
 
Tapering prayers! I just gratefully threw away some pred pieces from when I was tapering in July. No pred for over a month, may that encourage you. :)
 
Excellent news :dance:
I agree slowly slowly. Such a good feeling to be heading in the right direction.
I hope her heartburn improves too soon. X
 
Woohoo! :dusty::dusty::dusty:

Sending you mega loads of luck that the taper is smooth one! :goodluck: and everything crossed!

Dusty. xxx
 
Congrats DanceMom! It's nice to get off the Prednisone. My son started his final week of taper today. It's been a very slow process, but we made it! Now here's hoping that MTX keeps on working!
All the best to you as well! I hope it's a smooth ride!
 
Hoping we don't have a problem here.....

The last few days I've noticed A scratching at her bottom and complaining that it itched. Admittedly, I ignored it because I was in my "happy place". Tonight she asked me to look because she said it felt like there was a sore there. Sure enough there is a very small crack and the area is very red. I put some butt paste on it which she said was soothing. Is this "crack" from scratching?
 
Do anal fissures itch MLP? Is there a particular treatment? Whatever it is I believe it is in the beginning stages.
 
My daughter also complains about at itchy and painful bottom. We also use a butt paste but it doesn't really help much at all. She keeps saying where she puts the cream isn't where it hurts. Is it possible to have a fissure without bleeding? I don't know how to help her!
 
We use calmoseptine which helps sometimes but DS has ALOT of rectal issues so that area is a mess right now .
Not sure on the itching
 
My son has an anal fissure and skin tag. The fissure isn't visible, although the GI seems to know where it is! I can see the skin tag though. My son sometimes has an "uncomfortable" feeling, like there's something there (um, a skin tag, maybe?!), and sometimes some minor itching. GI said it's likely due to the fissure. It was worse before he started MTX, as that makes his stools softer and less irritating to his bottom. Previously, when constipated, he would have bleeding when having a BM, and a sore bum afterward. The MTX has given us one nice side affect.
 
Sitz baths can help with itching and healing but OTC cream wise sometimes if you move to a haemorrhoid/anal cream like Rectinol or Anusol it can help alleviate the itching and redness that often goes along with these type of things.

Dusty. xxx
 
Long time hemorrhoid sufferer...had a fissure and didn't even know it, until my dr. told me, but it healed on it's own, thankfully. I have a prescription for steroid suppositories, which are good for putting right where the pain is located.
 
In my daughter's case, we tried everything and did not work. Only thing that took away the pain, redness and itching, was aloe vera (the plant). She was on prednisone and asacol at the time and her gut issues were under control. She was put in remicade due to the fissure and now is gone. She did not have any blood at first but later did.
 
Taper still going well. Had labs drawn this morning so hopefully those look good. I forgot to check her bottom today but at least I didn't notice her digging at it! lol She definitely seems more tired lately but I guess that is to be expected with school being back in. It is a long day for her.

Something has got to be done about her poor lips though! Her bottom lip is swollen and has a nasty looking crack (fissure?) down it that randomly bursts and bleeds throughout the day/night. Trying to do some research on orofacial crohn's disease but I admit, some of it is over my head. Anyone have any experience with this? Inside her mouth looks fine, but her lips are really starting to bother her.
 
Oh my goodness, Nick also suffers with swollen lips particularly his bottom one which has a crack that does not seem to want to heal. I never made the connection between this and his CD. This disease is just ridiculous ! I'm getting extremely pissed off with it ! Dancemom hope the taper continues to be smooth and thank you for the heads up on the new symptom, if you find a magic cure let me know.
 
Well, Hepatic Function Panel is back. The Alk Phos keeps getting lower and lower and I'm not sure if that is something to be concerned over or not. It was 88 last month and is now 62 (norm is 184-415). Her ALT is still high but not anything to stress about. It's 49 (norm is 8-24). Seems as if she's handling the 25/50mg of 6-mp pretty well! Still waiting on the other results to come in. If anyone knows anything about the low Alk Phos trend please chime in!
 
DanceMom - my daughter also has a low Alk Phos. She's quite a bit older than your daughter, so I don't really have to worry about her growth (I believe a high alk phos means your child is growing) but anyway, her pediatrician keeps telling us not to worry about it though she does say it is related to having Crohn's. She never specifies how it's related though. Sorry, not very helpful but just wanted to say we're in the same boat!
 
All results are in....

GGT is 26 (norm is 3-22)
RDW is 15.9 (norm is 11-15)
Absolute Lymphocytes is 1162 (norm is 1500-6500)

Are any of those numbers concerning? I never can tell....

And I also need some input about this "moon face". Her cheeks got significantly larger after moving up to 40mg, but in the last 2 days or so they've practically doubled in size. The kids started making fun of her at school today and parents at dance were asking me if she was having an allergic reaction. Should they be swelling that much more if we are tapering? And should one be bigger than the other?
 
DS had moon face the entire time we tapered and yes it got worse once we started to taper until about a week or two after being off pred . This was very pronounced when he was on pred for three months prior to tapering .
Can you talk to the school about the teasing ?
Maybe. The school nurse or guidance counselor could talk to the class ?
 
MLP - I offered to email the teacher but A wants to try to handle it on her own first. She isn't bothered by her appearance (which helps) but just wishes the kids would stop laughing. It breaks my heart to think someone would pick on her!
 
First off...that's one strong girl you have. I know your proud and you should be.:hug:

I hope the teasing stops soon and the moon face too. Grace had a slightly rounder face but nothing to bad.
 
Farmwife - A only had slightly fuller cheeks at 20 mg but when she jumped to 40 the real "moon face" started. But the last few days has taken it to a whole new level. And the right side is larger than the left, which just so happens to be the side that stupid lip crack is on. Her lips are also swollen and she says they hurt.
 
Dancemom, sorry to hear about your little girl. My son also had low Alk Phos for a while. It is normal now. I asked one of the infusion nurses what a low number meant since most of what I found related to high counts. She said low Alk Phos indicated absorption problems. That made sense as he started gaining weight after the number went up.

Second the sitz bath with epsom salts for butt comfort based on when son has fissure. Calmoseptine was good too (you can find it at walgreens)

Good Luck. Hope she is feeling better and the taper gets easier. :hug::hug:
 
Ella's face got very full and noticbly round when she was tapering. It used to be change daily, I have read about reducing salt intake to see if that helps.
Though Ella was never bothered, I think she had the odd comment but ignored them. I hope the tapering continues to go well and her lips get better real soon x
 
Regarding the lips DanceMom. I do recall reading of others on the forum with this problem including a couple of children. Put Lips and Crohn's into search.

Also please have look into Granulomatous Cheilitis as a possible cause if her lips are anything like this:

gran-cheil2-s.jpg


...it causes the lips to swell and does lead to splitting.

Dusty. xxx
 
Nurse thinks the facial swelling is just from the Prednisone and that the lips are just chapped and dry. I still think there is a connection. Even the inside of her cheeks seem swollen because she is biting them when she eats. We go down to 30mg starting today so I just hope there is an improvement.

GI is supposed to be checking the labs. I think we are still waiting on the CRP.
 
GI says labs are "great". I guess things are expected to be abnormal? Nurse said to see the Pedi about the lip. I can't help but be frustrated about that. Meanwhile her face is even larger this afternoon. .....
 
Sorry her face is reacting so...I'm glad that she can continue to taper. We haven't done pred, so I don't have any advice. Just here to be a friend and cheerleader.
 
Her face is even more swollen today. So much so that she says it feels weird to move her face. Her whole body is swollen and she says it feels like she is dancing in someone else's body. Just to give you an idea of the dramatic change, her friends did not even recognize her when she walked in the studio today. Friends that she's danced with for 6 years had to ask her who she was. Prednisone and I are not friends at the moment.
 
Oh my DanceMom, I am so very sorry to hear this. :( How heartbreaking for you. :ghug:

Sarah has never been on Pred and Matt barely had side effects. Someone should be along to let you know the level of swelling their child experienced. Dexky? Catherine?

Dusty. xxx
 
DS had swelling in his face, neck, hands , and torso
With skinny legs - it looked very weird.
Every time we saw Gi or Rheumo we were told early signs of Cushing syndrome


http://www.mayoclinic.com/health/cushings-syndrome/DS00470


and they were all agreeing he needed to be off pred.
It took a very long time to go down but he had been on it for three months at least before the wean .
I hope things. Clear up for her soon
 
EJ's swelling is always in the face. His is actually more pronounced on uceris than it was on pred (twice). He too had to endure some teasing when he started school this year but he says the other kids have gotten used to it now. I hope all her problems are just the pred DanceMom. For my son, the swelling went away soon after the taper but not during the wean:(.
 
My son just finished his Pred taper yesterday. He's been on it almost 5 mos-2mos longer than we had hoped. His face swelled a lot, as well as his belly. And I'd swear that both are more puffy some days than others. I was concerned when I saw him at camp a couple weeks ago. His face was so puffy, it didn't even look like him. I think it had something to do with being out in the sun too. Such a wonderful and horrible drug. I hope you see your little gal's puffiness decrease soon.
 
Sarah only had the puffy face on her 50 mg course of pred. The swelling was even on both sides.
 
My daughter got very swollen all over her body. Her face was so round that she did not look her self. It felt hard and warm to the touch. Also red cheeks. My son start to get round and puffy right away. Both of them got her normal face shape when they stop prednisone. It took a couple of weeks.
 
A is already looking better in the face. The rest of her is still swollen. She's gaining about a pound a day which has me slightly concerned. She went from 49 lbs. to 53 lbs. very quickly. I know this is "normal" for Prednisone but we are still adjusting to our new "normal".
 
My son gained weight quickly too. 10 lbs the first month, then another 10 over the following 2 months. He stopped gaining after that, which is good. I didn't want that rate to continue! I'm hoping for a growth spurt now that he has finished his taper to help even out the weight gain.
 
my son gained 20 lbs then stabilized-
he has not gained alot in the past year since so it does even out.
 
She came home from school that way Farmwife. No salt, and no new foods. I've taken pics daily to note the differences. Her lips are not swollen though, so that's good.
 
School is good. Her teacher is gracious with the bathroom trips, which is good because they are increasing. I think if we can just make it off the Prednisone then things will go back to normal. Fingers crossed anyway!
 
Well, I had to go buy my poor girl some new clothes today. She jumped up 2 clothing sizes this week and nothing fit anymore. She just laughed through it and claimed she looked like a hard boiled egg (her tummy is hard like a rock).

The BMs are increasing....up to like 6 today. I guess this is normal with a Prednisone wean? Did I mention that Prednisone and I are not friends right now??

And her poor bottom is just raw. She was using flushable wipes but they burn too bad now so I try to help her dab with a wet cloth. It's awful to hear her scream (especially in the mall bathroom!). We use a barrier cream but it is just so red and painful looking. I have no idea what she is going to do at school tomorrow.....
 
Your poor girl! My son's bms increased with his taper too, but I was blaming it on the MTX. Thanks for mentioning it, I'll have to do some monitoring.
A tip for you... For clean-ups after a bm, I have gotten my son to lean forward while sitting on the toilet and poured warm water onto his sore bottom, then dab dry with a baby wipe. Keeps the wiping to a minimum. A squeezable water bottle that has the little spout for drinking works well. This would not work in a school or public bathroom, but may give some relief at home. My only concern would be the water running back to front, as she's a girl, but maybe you could make it work somehow.
 
Aww poor thing! I don't know what can help with her raw bottom?? But maybe if she sleeps with just a nightgown and no panties - to give it a chance to 'air'???
 
I don't know if you want to try it, but if you take the skin out of a piece of aloe vera plant and put the piece at night in her bottom, it will take the redness away and she will feel better. It worked wonderful with my daughter, I used to clean her with water and pat dry with cloth and then apply the aloe vera.
 
We do have an aloe plant but I've never actually used it. Am I to use the inside or the green outside? I will try anything that may work! It is almost like she has a severe diaper rash (though she doesn't wear diapers) and it suddenly appeared in a matter of hours.
 
I've never used a plant but you do get aloe vera gel that my daughter used on her bottom. She said it helped but she likes desitin more.
 
DanceMom said:
Well, I had to go buy my poor girl some new clothes today. She jumped up 2 clothing sizes this week and nothing fit anymore. She just laughed through it and claimed she looked like a hard boiled egg (her tummy is hard like a rock).

The BMs are increasing....up to like 6 today. I guess this is normal with a Prednisone wean? Did I mention that Prednisone and I are not friends right now??

And her poor bottom is just raw. She was using flushable wipes but they burn too bad now so I try to help her dab with a wet cloth. It's awful to hear her scream (especially in the mall bathroom!). We use a barrier cream but it is just so red and painful looking. I have no idea what she is going to do at school tomorrow.....
Click to expand...

Maybe she has candidiasis from the steroids. You may want to ask your doctor for some nystatin cream - this works fast on beefy red bottom rashes if it is caused by candidiasis.
 
DanceMom said:
We do have an aloe plant but I've never actually used it. Am I to use the inside or the green outside? I will try anything that may work! It is almost like she has a severe diaper rash (though she doesn't wear diapers) and it suddenly appeared in a matter of hours.
Click to expand...

First I wash the piece I am going to use, then I take out the outer skin from both sides, you will end up with a green gooey piece. Take the piece and slowly apply the gooey stuff around the affected area, you can squeeze the piece to get more liquid. At night I just leave the piece in her bottom. She said it does not bother her. I told the GI about it and he said it was ok to do it.
 
I have a friend with lots of problems with hemmorhoids and related issues and I suggested an aloe product I use for skin issues, she found it helped LOTS. If this product worked, I'm sure the actual plant will work just as well, if not better. FWIW, I've found this one product to work great on EVERYTHING (sounds too good to be true :lol:) but, it's a staple at my home for 25+ years for any kind of skin irritations, acne, burns, healing of cuts (but its not an antibiotic like polysporin though), etc. If anyone is interested, it's called Nutri-hydrating mist, made by Aloette Cosmetics (there's also a second product that I use with it called Visible Aid).
 
We did not try the aloe last night but will tonight. We got home late from church and we just forgot. This morning I looked and there were two small bumps in the area, almost like pimples. Is this indicative of the candidiasis or something else?
 
Good news is her bottom looks better. I couldn't convince her that it is okay to rub a plant in such a sensitive area, but miraculously it is starting to look better on its own. Thankful for that.

Bad news is that she is starting to get severe headaches, which for her is a sign of a flare. Last week her BMs started increasing (went from 2-3 a day to 5-6 day) and yesterday the headaches started. When we got to church at 9:30 this morning and she told me she couldn't wait to get home and take a nap I knew there was a problem. When she woke up from her nap she had such a bad headache she couldn't eat and can barely talk. Tylenol was no help. Out of desperation I tried Ibuprofen. Still no help. Tried a hot shower....ice on the back of the neck....relaxing in a dark room....she's still miserable. Any other headache remedies you can recommend?
 
Sounds like a migraine
Which without rescue meds from a Neuro
The only thing left would be to try to sleep again.
 
A's headache is much better today, just a dull ache that she can function with and doesn't want meds for. I'll mention it at her upcoming appointment.
 
I had to come and report a positive! While A was practicing her dance yesterday I noticed her body looked far less swollen and she said she could feel a definite difference. This morning when she woke up the puffiness in her face had gone down quite a bit and she is starting to look like her old self again. We're down to 25mg of Prednisone now and the side effects are really starting to ease up. She no longer has trouble sleeping and isn't nearly as emotional. Her appetite is almost back to normal and life is good again!

Because things are looking up in that aspect I'll try not to get discouraged that her lip is cracked and bleeding again and her BMs are bulky and frequent. Focus on the positive!! lol
 

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