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DanceMom

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The Dermatologist called and told me that the biopsy results came back - A does have erythema nodosum. The pathologist reported that it was most consistent with an early EN lesion. She said that A's case seemed to be slightly atypical (she never presents typically....go figure...lol) and she's calling the GI now to see how he wants to carry out treatment. A does have new lesions since her Derm appointment so according to her the inflammatory process is still active and needs to be treated. This Derm doesn't typically treat children and said she doesn't feel comfortable treating A so she wants to see how the GI wants to handle it. Maybe I'll hear back from the GI or his nurse later today. Maybe they'll even have the pill cam results!
 
That would be great to hear the results of both tests today and get to move forward. Let us know what your GI wants to do, if anything.
 
GI nurse just called. Said they received the leg biopsy results and are very concerned. They wouldn't discuss the pill cam results over the phone and want to see her tomorrow afternoon. I'm going to go crazy between now and then.
 
HUGS
Crazy is a land between now and then. I'm the President.
Tomorrow will come soon enough.
Do you have a list of question you want to ask? That is if it's IBD.
 
I'm not sure what to expect at the appointment honestly. I already know that the rash is EN but I also know that IBD is not the only underlying cause of EN. It makes the most sense, but nothing ever seems to be clear cut with A. I'm sure she frustrates the doctors, lol.

My mind is a whirlwind right now....but I think my main concern is what if he makes the IBD diagnosis and that truly isn't what is wrong with her. She doesn't present typically so how will we ever know exactly what it is? I'll want to know how confident he is in whatever diagnosis he makes. Most of all I just want to know how he plans to treat her because I want her to feel better (not even sure if she knows what "better" feels like). If anyone has some intelligent questions I should ask please feel free to share! I could definitely be the VP of CRAZY at this point!
 
Did the nurse say what has them 'very concerned'? When my son had erythema nodosum lumps on his shins he had a pretty high SED and CRP. One thing to hang onto...you're getting results and then you and your GI can react. GI's don't like inflammation in young kids...they always want to get it under control quickly. Prayers sent your way.
 
The nurse wasn't very specific other than saying that the doctor was concerned about the leg biopsy and we needed to come in. She said he had just finished reviewing the slides from the pill cam but hadn't written his report yet. A recently had CRP checked and it was fine. I'm confused that her blood never seem to show any inflammation yet her skin so obviously does. She's a confusing kid and I just hope the doc has all the pieces put together by tomorrow afternoon.
 
WE have been in your shoes- DS does not present classically.
However- we did get more than one opinion ( 3 in fact) since dx.
WE can only treat what you know to be the case at the time since more symptoms may appear at a later date- but there is still no way of telling the future (trust me I have tried)
Ask what they think caused the EN?
What she has per pill cam?
What treatment will be used for how long and when will you know if said treatment is working?
WHen do they want to be notified?
What other options are there?
What would they expect if you did nothing or treatment X vs treatment Y?
What are the side effects of X vs Y etc....
good luck
 
Tomorrow will be here soon. I hope you are on the island visiting friends - halfway there. I hope your sleep is in a nice island hammock with a cool breeze and lulling ocean sounds. You'll have plenty of time for insomnia when you actually here what the doc has to say :(. I think we all went through times of denial when we finally got our diagnosis. IBD isn't cut and dry, but enough little pieces and the picture emerges... sometimes it isn't the image we were imagining. It will be a relief to get some answers, though, hopefully. Then you can learn to accept the answer and work to finding a solution to the problem...
 
Hope the appointment goes ok and they manage to get the results of the pill cam so you don't have to wait for that.
 
I don't know very much about your story, but I hope all goes well with the appointment. Hopefully your doctor can make a DX and you can move on from there.
 
Good luck today! I hope it yields a specific plan of action and gets things under control!
 
Well, I managed to sleep through the night but I am crazy anxious this morning! Last night A got out of bed complaining about ankle pain. She'd been tumbling in the backyard (came home from school with chest pains but then a few hours later felt well enough to go out and play, lol) so I told her maybe she'd strained it a bit. This morning I noticed her limping a bit so I checked her ankle and sure enough there is a new EN spot there. Poor girl.
 
Thank you everyone! Your support means a lot! My Mom is very supportive as well and will be going to the appointment with me. Hubby has to work.

I had A weigh this morning and she has now lost all the weight she had gained (3 lbs.) Frustrating.

Only 6 1/2 more hours until we have some answers.....
 
Today was an exhausting day....

We met with the doc today and we were told that she does have Crohn's Disease. I'm not shocked, but I am in shock if that makes any sense. I've thought for quite some time that "something" was not right but now that something has a definite name. I was given a nice packet of info and resources which I will look over once the shock wears off.

Besides the rash being positive for EN, there was also an ulcer found in the small intestine. Because of the ridiculously rapid transit time the doctor wasn't able to get a ton of good images so there could possibly be more. He's having his partner in Jacksonville review the slides as well, just to be thorough.

He wants to start her on Pentasa to see how she responds. If in 3 weeks there is no improvement he will add Entocort. If pain persists but other symptoms resolve he will add Neurontin. We're keeping her on the Periactin because she did gain a few ounces. This sounds like a good plan for now. Before he switches to the "big guns" he would like to scope again and "use a longer scope to reach throughout the small intestine". I didn't even know that was an option but I just smiled and nodded, hoping it doesn't come to that. A plan is in place and that puts my mind somewhat at ease.

Now to explain this all to her in kid-friendly terms.....
 
Get the book toliet paper flowers -it helps-so does Pete has crohns from Ccfa.

Take some time for yourself first.
It is very hard to hear the dx even when you "know" it's coming.
We are here when you need to vent cry and grieve.
 
The "Pete Has Crohn's" book was in the folder I was given. I'll have to look over that this weekend for sure.

I'm still waiting to see if I'm going to have a breakdown or be "okay" with it all.....
 
Dancemom its very hard at first but as time goes by you'll start feeling a bit better..:ghug:
 
Thinking of you, but glad now you have a diagnosis you have a plan!

(((Hugs))) :ghug:

xx
 
Sorry to hear about the definite diagnosis. But at least now you have that plan that will hopefully get her feeling so much better. I hope the Pentasa works well for her. :hug:
 
You're gonna have that breakdown, then you'll be okayish, then you'll have another, then you'll be okayish, etc.,etc.!! The good news is the interval between breakdowns gets longer and longer so mostly you'll be ok:). Praying for a mild, easily controlled case for her mom!
 
That period around diagnosis is such a hard one. (((((hugs))))) But things get MUCH better, I promise. Especially once she gets treatment and starts feeling better.

Sounds like you have a good Dr. with a good plan.:thumright:
 
Well I wish I could say happy to hear this but I'm not.
I am happy you finally have a direction and you can get your dancer feeling better.

How is she taking all of this?
 
A hasn't said too much other than asking when she gets to start taking her new pills. I told her this morning that Daddy and I would sit with her this weekend and explain everything the doctor said. She said, "Good, because you guys used big words that little kids can't understand." I think she will handle things just fine. She's pretty fearless like that. My husband will likely have a tough time accepting this. He and I won't really have a chance to talk about things until this weekend due to our work schedules. I know he feels helpless and useless right now and I wish I could make that better for him. In time we will all be fine.
 
I agree that it sounds like you have a good GI doctor. Upon our child's diagnosis ours blasted us with a lot of meds...and because at first we were in denial and spent a few years not medicating cause Brian seemed to be fine and we doubted the dx we got a lot of "I told you so...hope you didn't cause him damage...etc etc" (We NO LONGER see that guy!!) Your GI sounds gentle and thorough. His checking with a colleague...like it!! Making plans for any needed tests before prescribing too much. All sounds good. I liked what Mark (Dexky) said earlier. In a nutshell, its hard and expect periods of mourning it, but you, your husband and your daughter will be ok and get thru this together. It will bond you 3 forever in a really close way. And your little sweetie sounds tough. Crohn's kids amaze me :)
 
I absolutely love our doctor! He is so patient, thorough, and simply amazing! He gave us the option of starting with the Pentasa and Entocort and trying to wean her off the Entocort, or starting with only Pentasa and adding Entocort if needed. I like to know exactly what works so starting with one med made sense to me. He said that approximately 80% of IBD kids end up needing something stronger than just Pentasa but he didn't want to burn that bridge before we have to. I totally agree. I feel very comfortable with the plan we have in place as a starting point. I just thank God we found this doctor and look forward to better days!
 
Looking for the right words of comfort - but alas, I'm just not that eloquent... It sucks. I'm sorry...

Speaking from my faith, one thing I have learned is - you will be okay and your daughter is blessed to have you as her Mum... now go have a good cry - again... it is all okay.

(((hugs)))
 
Dancemom, Devynn started off on Pentasa. It worked amazing for her! It only stopped working because my Mom was diagnosed with cancer and passed away 4 weeks later. The stress threw Devynn back into a flare and the Pentasa stopped working.
 
A started her Pentasa tonight and I think it gives both of us a sense of relief, even if only temporary. The doctor asked her if she'd rather take fewer big pills or more small pills and she went for the big pills. She told him she didn't have time to take too many pills, she was busy, lol. She swallowed those things like a champ!

At the appointment yesterday the nurse signed us up for the online account so I have access to all of her medical information from home (awesome feature!). I signed on tonight just getting a feel for the system. I got a little choked up when I saw "Crohn's Disease" in her file. Seeing it in print made it more real I suppose. We went from "abdominal pain and diarrhea" to "rash and growth disorder" to "Crohn's Disease and Erythema Nodosum" in 4 months.

I'm curious if anyone has had their child see a Behavioral Health Therapist since diagnosis? A's GI recommends that she see one and I'm starting to think it would be a really good idea. I want her to be comfortable with her condition and I'm not sure I have all the right words to say. I'd actually love some advice myself on how to inform/educate friends and family members and how to help her accept and understand what is going on with her body. She's such a tough little girl, almost too tough. I think I'm still caught up in this emotional whirlwind.....
 
DanceMom said:
She swallowed those things like a champ!

I'm curious if anyone has had their child see a Behavioral Health Therapist since diagnosis? A's GI recommends that she see one and I'm starting to think it would be a really good idea. I want her to be comfortable with her condition and I'm not sure I have all the right words to say. I'd actually love some advice myself on how to inform/educate friends and family members and how to help her accept and understand what is going on with her body. She's such a tough little girl, almost too tough. I think I'm still caught up in this emotional whirlwind.....
Click to expand...

Hey!

I can remember when Alex first started taking Pentasa - he had never taken a pill before! Our kids are champions!!

Regarding the behavioral therapist... Alex does see a therapist and it is wonderful! He's been with her for a couple of years now (through puberty - woo-hoo!!) and it's been great for him to have someone to discuss issues with (outside of me!) and for reinforcement from her when he doesn't take his pills! I'm a big supporter of the idea.
 
DanceMom said:
I'm curious if anyone has had their child see a Behavioral Health Therapist since diagnosis? A's GI recommends that she see one and I'm starting to think it would be a really good idea. I want her to be comfortable with her condition and I'm not sure I have all the right words to say.
Click to expand...

I'd say that it depends on the child and I'd guess that a girl might be more likely to need this than a boy. Boys, at least my son, are more likely to laugh and joke about their bathroom habits. I know it's largely a defense mechanism for him but it has preempted and disarmed what would likely be some teasing classmates.

From what you've said about her though mom, she may surprise you and tell you she doesn't think it's necessary at all. She sounds like she can hold her own:)!
 
Yeah that- IBD has given DS the ability to talk about bathroom banter as much as he likes-whihc he finds hilarious.
 
They offered therapist for Brian too. He said he was fine (He hates the time it takes to do the GI appts and tests already). I, on the other hand, wanted to go see her!!:) But it was only for kids. Ha! They said Brian would have to come with me ;)

I'd leave it up to her. She'll know its there if she ever needs it. Or if you notice she's having trouble.

On the boy thing, Brian too thinks loud gas is something hilarious. The smellier the better to him...like his weapon, but agree it's likely a defense mechanism. He makes a joke before anyone can say, "OOH Who did that?"
 
I suppose we'll see how she reacts after we talk to her this weekend. Perhaps I'm the one that really needs counseling, lol.
 
I agree with everyone else to just wait and see how she responds. She's been dealing with this for awhile, right? You just have a name (and treatment plan!) for it now. I think the dx is way tougher for us parents.

You know you're good when your kid has an entire folder full of Crohn's jokes and cartoons that they think are absolutely hilariously. Maybe it's a boy thing... or his way of coping. Either way, if he can laugh at this disease, I call it good.
 
I'm so sorry to hear that A has Crohn's but so very glad you finally have answers and can now tackle this head on. :ghug:

I agree that you will have your black dog days but as Dex said, they will get fewer and farther between and before you know it you will outrun that blessed dog most of the time! :) You have a sound plan in place and that is fab to hear, well done! :thumleft:

I also agree with A seeing a therapist. It is good for them to have someone that they know, trust and can vent to that isn't family. Whose only interest is their well being and their time with them is theirs alone. To me they are a win/win situation. I don't believe they do any harm, if it makes no difference then you are no worse off and if does make a difference well...bingo!

Good luck Mum, I hope your lass finds long and lasting relief. :heart:

Dusty. xxx
 
Last night was our annual camp-out for recital tix. Some of us dance families get together and pitch tents and cookout outside of the studio waiting for recital tickets to go on sale Saturday morning. The kids have a blast playing and just being kids all night. One of the other moms was thoughtful enough to bring her camping toilet for A because she knew she'd be needing to go frequently (and usually we have to load up and make gas station trips). And A's two best friends saw her taking her pills last night and told her how cool they thought she was for being able to swallow such big pills. We really had a good time and she had fun just being a kid. Great to see!

This morning hubby and I sat her down and talked to her about her diagnosis. She was extremely casual about it and had no questions. Told us she loved and trusted her doctor and didn't mind taking her medicine or having the tests the doctor said she needed. She makes it very easy to accept and I'm so proud of the strong little girl that she is.
 
Glad she took it well- just be prepared Kids process on a different time frame. An adult takes about 6 months to a year to process or grieve.
kids are hit or miss fine then out of the blue - anger or sadness then fine again for a while.

glad she got to be a kid
 
I'm sorry to hear that your daughter has Crohn's, but glad that they found it and that they have a good plan for her. Is Pentasa good with EN? No prednisone? I'm surprised by that given that she has such joint problems and EN. Keep us updated on how she does.
 
A doesn't have severe joint problems. She has achy joints from time to time but it is difficult to determine if that is from dance or from Crohn's. Many of the girls complain about their joints from time to time. Because she is young the doctor is taking a very conservative approach with medication right now. I think it is a really good idea to start with the mildest of medications and work our way up from there. For now A feels pretty good other than the aches from the EN.
 
Pentasa is used for maintence she still will need something to reduce the inflammation with EEN or a version of a steriod ( Entocort/oral pred)
That was why your Gi wanted to start with both.
The steriod is then weaned off ( in your case Entocort) and the pentasa is allowed to take over .
Pentasa typically is not strong enough to maintain remission let alone induce remission.
Drugs that induce remission for crohn's patients
Are
Pred /Entocort
EEN
Sometimes high dose Mtx -even that typically needs pred along for a while
remicade/humira also needs pred

This was not explained to us at first so like you we tried pentasa with getting inflammation under control first . Our Gi was respecting our wishes about pred but didn't fully explain it.
Second opinion doc ( while failing pentasa ) really explained it.

I would call Gi on Monday to get her started on something to stop the inflammation then you will be able to know if pentasa can keep the inflammation at bay.

Good luck
 
Joint pain does not come into play your child's gut is inflamed and needs to have that inflammation reduced as quickly as possible before more damage can occur.
How you choose to reduce that inflammation is up to you ( EEN , pred or entocort ).
But she will need something.
 
GI did not say he wanted to start with Entocort. He presented us with 2 treatment options and we chose the one we were most comfortable with. If she ends up needing more then so be it. We are reevaluating in 3 weeks.
 
DanceMom - My son started with prednisone and Pentasa. He's been in remission for three years. Every child is different...

There is *so* much information out there and unfortunately there doesn't seem to be a one fix all approach. I can remember when the doctor first asked me if Crohn's ran in my family - I had no idea what he was talking about... I found myself surfing the net looking for any piece of information I could gather - praying I wouldn't make the wrong decision. For me, I found all I could do was listen to what the doctor explained, research what that meant, consider the options, and pray that I would be lead to what was right for my son.

I pray you feel comfort in your decisions and your daughter starts feeling more comfortable real soon!!

((hugs))
 
He gave us the option of starting with the Pentasa and Entocort and trying to wean her off the Entocort, or starting with only Pentasa and adding Entocort if needed.
Click to expand...

I apologize - I assumed by the statement you made above the options were as you stated-
Entocort +pentasa with Entocort wean or Pentasa alone.

I was just trying to provide you with info no one provided us with at the beginning-
simply that Pentasa or other 5ASA's are typically not enough by themselves to act as a maintenance med let alone induce remission.

Without that info and all the scary side effects we read online about pentasa alone. we chose pentasa for DS ( no pred) -like you - we didn't know and were new and scared of everything.
Needless to say Ds got worse by the week - after 3.5 weeks he only wanted to sleep was vomiting a lot never ate etc.....
Also not knowing that even the EEN or pred would take close to another additional 4-6 weeks to get relief.
Again for him we tried the least scary route- EEN. while again waiting for 6-mp( which can take 3-6 months) to kick in this time.
WE finally gave in to pred in Feb almost 6 months after dx. Even then that was a low dose
so he wouldnt have as many side effects. He story went on for another 6 months until we found the right drug ( I wont bore you.)

It is a journey that we all have to take to remission. Some take longer than others to get there - most take at minimum a year after dx some as long as two years.

I truly really hope that your daughter's journey is a very short one and she get relief from pentasa alone.
 
He did give us those options. He didn't seem to prefer one over the other. Pentasa is just a starting point but hopefully it will work for her. If not then we have other options. For the time being she is doing okay.
 
I am glad she is feeling better :)
MLP is right that Pentasa is a very mild medication. We wanted our son on it at diagnosis and our GI told us it was "like taking aspirin for a brain tumor". (He was always very blunt). So we took his advice and did Prednisone and then 6mp. This was our situation, and of course I don't know all the specifics about your daughter. I would just want them to keep a careful eye on symptoms and test results so if there are any changes they will act quickly. Our GI uses a Fecal cal test to monitor inflammation. I guess my only advice is to always be prepared for that next step. We all hope that our current medication keeps working but if it stops working it is very difficult to make a quick decision.

I agree Brian's mom about wanting therapy for myself!!! I don't think my son needs to see anyone but I sure would like too!:yfaint:
 
A can't really be monitored by Fecal Cal or CRP because those always come back normal for her. At this point we are going by symptoms alone and she will be scoped again before moving on to any of the bigger drugs. At this time A does still have EN but we are aware that probably won't go away rapidly. She has intermittent diarrhea but we aren't seeing blood. She hasn't complained of stomach pains or headaches for over a week (this had nothing to do with the Pentasa). She's eating well and isn't having reflux. For her she's doing great. I'm fully aware that this could all change within the hour, and if it does I'm prepared to contact the nurse and request the Entocort (or Prednisone if she feels it will work better). But for now A feels well and we are happy with our decision.
 
I will say that even with the stronger drugs it took a while for the headaches and stomach pains to go away. I was surprised at how long it took before Johnny felt normal again. Keeping my fingers, toes and everything else crossed that she continues to do well. xxx

We found Johnny's headaches have more to do with dehydration. He takes a big water bottle to school now and it is much much better.

((((((Hugs))))))) mom, I know none of these decisions are easy and unfortunately it seems like the choices they give us are never great either. Sounds like you are doing great though :)
 
Dancemom,
Glad you finally have a diagnosis. It is nice to put a name to it so you can move ahead and start to get it under control. It sounds like you are doing a great job. We too were very scared of the big drugs at first. I think it is good that your doctor wants to take things slowly although like MLP said I am surprised he didn't want to start her on entocort first and then go to pentasa. But every doctor has their own way of doing things. My friends son has mild Crohn's disease and has only been on pentasa since diagnosis and is doing well.
 
My main thought about the prednisone was for her erythema nodosum... I guess that isn't first line treatment. I just looked it up and it isn't. What did her biopsy show with the EN - did it say a type or any clues to the source?
 
I didn't actually see the biopsy report. I do know that the Dermatologist and GI talked at length about the best course of treatment for her. The Dermatologist said she typically prescribes a medication similar to Ibuprofen but the GI wouldn't approve that. She also recommends bed rest with her adult patients but that isn't going to happen with an active 8 year old. They decided to treat the gut and see how the EN responds. She does not have any new lesions so that is a good sign.
 
EN runs parallel to intestinal activity so treating the gut should treat the EN.

Good luck! :goodluck: I hope the is soon a thing of the past!

Dusty. xxx
 
A got her stitches out today! She's ecstatic and I'm relieved not to have to worry about them anymore.

I noticed that A looked really bloated this evening. Her stomach is normally very flat with well defined abs but she actually looked pudgy. She didn't look that way this morning. She said she had 3 BMs today, all formed and normal. Could the Pentasa be causing water retention? I've never seen her look like that before.
 
Her belly was fine this morning. I'm probably over-analyzing things. She did have 3 new EN lesions though so I'll have to keep an eye on that.
 
I almost got excited that the Pentasa seemed to be doing the trick (no diarrhea or tummy aches for several days) and then things started to take a turn. A has several new EN lesions, even one on her back (ouch!). She had diarrhea last night and woke up this morning complaining of a stomach ache. Also, for the past 2 weeks or so she complains of severe chest pain when she exercises. Initially I thought it was asthma related but the inhaler doesn't seem to make a difference in how she feels (and she doesn't cough or wheeze). Does anyone else's child ever have these complaints of chest pain? Could it be heartburn?
 
My son experiencied chest pain, I don't know that he understood what heartburn is but he was put on nexium to no avail. The chest pain subsided shortly after his first Remicade infusion. His pain was located actually at bottom of sternum.
 
Hmmm.....so would this chest pain be another indicator that the Crohn's is not under control? I will monitor her closely over the weekend and contact GI nurse first thing Monday morning if symptoms persist.

A positive though - she has gained 4 lbs. since starting Periactin a few weeks ago! She is eating everything in sight! Several people have commented how much healthier she looks (her face has filled out and lost that sunken in sickly look). For that I'm thankful!
 
DanceMom said:
Hmmm.....so would this chest pain be another indicator that the Crohn's is not under control? I will monitor her closely over the weekend and contact GI nurse first thing Monday morning if symptoms persist.

A positive though - she has gained 4 lbs. since starting Periactin a few weeks ago! She is eating everything in sight! Several people have commented how much healthier she looks (her face has filled out and lost that sunken in sickly look). For that I'm thankful!
Click to expand...

Hmmm... I'm not sure if the two are mutually exclusive. My son definitely wasn't out of the woods yet at that point (he had just started taking the meds). I just thought it was more of a side effect.

Yeah for weight gain!!!
 
She started having the chest pains after starting the Periactin but before starting the Pentasa. It only hurts during/after exercising, but they have PE four days a week and she dances 4+ days a week. I don't want her to get discouraged and settle for being inactive in order to avoid the pain. Are Tums safe for kids to have? If so, might be worth trying.

And as for the weight gain, my Mom has promised her a 50 lb. party when she hits it. Only 2 more lbs. to go!
 
O.K. way out in left field here BUT I was a professional dancer and danced A LOT growing up. I also had chest pains when I breathed in so bad that once I was taken by ambulance to the hospital. Believe it or not it was some muscle attached to the rib cage that very often in dancers gets torn and doesn't allow thte rib cage to expand blah blah blah.

Anyway, even though it was a muscle I couldn't tell it was a muscle type pain. Maybe bring her in to ped or othropedist or something?
 
Johnny had chest pain. I am pretty sure his was reflux. It got worse when he was on Prednisone but got better once he started taking a PPI.

Now that he is in remission, no pain at all.
 
My daughter had chest pain too when she first started pentasa.....but hers was a constant stabbing pain. We went to the hospital a few times but they didn't think it was from the pentasa. We were told it was probably a pulled muscle....it took a few weeks to go away.
 
She describes the pain as stabbing and it only occurs during and after exercise. I never thought about it being a muscle issue but that definitely could be possible. I read about the costochondritis and that also seems very likely. She managed today though and kicked butt in both her dance and gym classes. So proud of her! She even climbed the rope to the top of the gym!
 
Just to be on the safe side make sure you get it checked out.

I remember reading of someones daughter who was getting a lot of chest pain and trouble breathing . I think she was on something similar to Pentasa. Her DR said it was a very rare and dangerous side effect.
 
The chest pain started before she started taking Pentasa but after she started the Periactin. Not sure if that could be a side effect of the Periactin but I suppose that is another possibility. I think I'll definitely email the GI nurse Monday morning and get her feedback. The more I think about it the more it scares me. Could be something simple, could be a sign of a more serious problem, could be a sign that the inflammation just isn't being controlled.
 
And so starts the dance with our partner Crohns!

Maybe I had what Samantha mentioned. IDK... I was a kid. But it was sharp and stabbing...happened when I tried to take a deaper breath thus the increase after exercise.

I am a fan of calling. Better safe than sorry.
 
A had a pretty good weekend overall. No more diarrhea although she did complain of mild tummy pains this afternoon. Her appetite has been astounding and I've had to make her stop eating more than once. I wonder if this overeating is attributing to the chest pains with exercise. Last night she managed to scarf down 2 large cube steaks before I realized it (along with a fried tomato and a few bites of garlic mashed potatoes) and had to make her stop eating. Shortly afterward she was in tears that her throat and chest were burning. She's up to almost a 5 lb. weight gain in the last month. She looked so healthy and "normal" in her swimsuit yesterday. Five pounds makes a world of difference on such a small frame! She still has one more month on the Periactin and then I'm sure it will be time to pull the plug on that med. Thankful for how well it has worked for her though!
 
That's a good sign that she's gaining her weight back. We haven't started Periactin yet, does she take it twice a day or once? Glad to hear it works cause I was doubtful.

This may be too simple, but could pain be acid reflux (Heartburn can really hurt like a heart attack....I get that if I eat certain foods)
 
She takes 5 mL of Periactin twice a day. It works well for her. I was doubtful because she's always had a good appetite. Now she has an astounding appetite, lol.

I do think the pain is reflux/heartburn. I think she is overeating at meals. I'm trying to keep a better eye on that and offer more snacks instead. So far so good.
 
Liam has had reflux since Feb and takes a PPI daily. However for the last month since we started him on Ensure the reflux has been back despite the PPI

When we saw the new GI on Sunday he said he thinks the reflux is caused by over feeding that I've been pushing too many nutrients into his body. He says it's a common problem with kids with malabsorption problems that because they are loosing weight (or failing to gain it) they get over fed and that to cause more problems.
 
That's good to know Maree. I fit into the "pushing too many nutrients" club!!

It's never a simple solution is it?!?
 
A had has obvious reflux before (spitting up) and was on Prevacid for a few months. She hasn't been spitting up this time but I still think we are dealing with the same issue. She was definitely overeating. I'll try having her drink more water throughout the day to see if that helps.
 
DanceMom said:
Five pounds makes a world of difference on such a small frame! She still has one more month on the Periactin and then I'm sure it will be time to pull the plug on that med.
Click to expand...

1 - I know 10 lbs makes a HUGE difference on me so YEAH for 5 lbs!! :)

2 - This is probably a stupid question,but what is the Periactin prescribed for? Is it to stimulate her apetite? What I first read about it was that it is an antihistimine, so I was a bit confused. My son also experienced the chest pains - he takes 15 mgs of lansoprazole daily for "gas". We used to get it by prescription - prevasaid, but it is no longer covered by insurance, so we buy OTC (which is okay, I don't feel guilty when I pinch a pill for myself, laughs...)

Thanks!
 
Periactin is an antihistamine but can also be used as an appetite stimulant. I was skeptical because A already had a great appetite but it definitely has worked. Her asthma symptoms have also improved so perhaps that was an added benefit.
 

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