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This Must be a Flare

D

DanceMom

Since her EGD/colonoscopy on January 17th A has been doing well. The best she's done in years actually. The prep seemed to make her feel better though her doctor warned me that is usually temporary. The antibiotics helped the diarrhea, and I thought that maybe our problems were gone. Slight denial maybe, but she's been so good lately.

But Friday night I could tell things were changing. The ride home from dance was a very quiet one, and when we got home she cried when I made her run her dances. She never cries when she practices. Ever. When I woke her up this morning for competition she barely ate and said her throat and stomach hurt. All day she was pitiful and cried at the drop of a hat. This is how it starts - with her saying her throat and stomach hurt. She wants to sleep all the time. Then come the headaches. I'm totally bummed.

So my orders say to call the GI so he can prescribe a 5-ASA medication. From what I understand this is not a risky med, but I do worry about side effects. I suppose the potential benefits outweigh the unlikely risks in this case though and I'm desperate to get her feeling better again. Any advice or suggestions are appreciated.
 
upsetmom

upsetmom

Location
,
Hi DanceMom
My daughters been on pentasa for a few months with no side effects.
The only thing is this is a milder drug and a few times they've had to put her on flagyl to get things under control again.

Good luck
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
DanceMom, read through this thread...http://www.crohnsforum.com/showthread.php?t=44963

I think I can speak for most parents on here when I say that mesalamine is one of the least scary things our kids have been/will be on. I hope it helps her but prepare yourself, they will probably recommend something much more frightening as a maintenance med. Good luck!
 
my little penguin

my little penguin

Moderator
Staff member
^^^ yeah that!!!
Most Gi 's compare it to giving aspirin for brain tumor.
It may help a small amount but pretty much useless by itself.
That being said I was afraid to give it to DS when he was first dx.
Don't be afraid to speak up if its not working in month.
That is typical and indicates she needs something more effective.
Good luck
 
Hope345

Hope345

Dancemom,

How is your daughter doing?
I was just wondering what age she is. My daughter is 14 and wants to join the dance team next year.

She is on Asacol, remicade and the coritfoam. If you have any questions let me know, I would be glad to help.
 
D

DanceMom

I understand that the risk of side effects is low, but I don't take any medicine lightly. Especially something that is likely to be a long term med. It just makes me nervous.

Julie, A has been dancing competitively since she was 3. What started as a fun hobby has become a real passion for her. She's amazing and I admire her for it. Her Pulmo encouraged her to be as physically active as possible and attributed her improvement in asthma symptoms to her athleticism. Her new GI doesn't seem too excited about her dancing and has mentioned that it may be too stressful for her. As long as A wants to and is physically able to dance she will. It makes her happy and keeps her going.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Then she should! When it becomes a nightmare increasing her symptoms and worsening her illness then you both can reassess that decision.
 
my little penguin

my little penguin

Moderator
Staff member
hugs- trust me-
none of the parents here are suggesting putting your child on any meds is an easy thing to do.
I agonized over pentasa for a very long time.

But from a parent who has been dealing with it for over a year as have others on this forum
we just wanted to let you know out of all the meds to be put on.
most of us would jump at the chance to go back to those early meds - if they worked.

as izzismom said"even scary meds start to look like baskets of kitten" when they start to work.

Hopefully you wont get to that point and she can take the pentasa and be fine.
I think most were trying to prepare you realistically Pentasa only works for a very small percentage of kids with IBD.


I watched my child suffer as have most on here for many months while we tried the less scary drugs one after another.
being very cautious in our approach before ruling out each drug.
at one point ds told me "mommy they don't make a drug that can fix me yet"

We found our drug for Ds and I hope you find yours for your daughter very quickly- since it breaks a mother's heart to make these decisions especially when its your child in pain.

AS one of the GI's said to us early on - there is no right or wrong path to treat this disease - it only matters that you find a therapy that works for your child.
Since IBD kids all react differently to different meds it is always a guessing game.
 
D

DanceMom

Maybe the potential side effects is only part of my fear. Maybe the possibility that it may not help is what I'm really afraid of. I'm not sure. I just know I'm anxious. But MLP, your post somehow made me feel a bit better. Thank you.

A question for those of you whose children also have asthma.....does your child's asthma tend to flare when their IBD flares? A has been off her daily asthma med for 2 years now and has been doing well. But now she has a lingering cough that has gotten much worse over the last 24 hours and I'm wondering if the whole inflammatory process is kinda taking over multiple systems.
 
my little penguin

my little penguin

Moderator
Staff member
In a word
- yes
DS has inflammation in his
Lungs - asthma
Skin- dermitis
Eyes- limbal vernal keratoconjunctivitis
Head - migraines
Plus from crohn's he gets mouth ulcers, joint pain , and vasculitis.

Thankfully everything doesn't flare at once usually.
But asthma wise we had to increase his maintence meds alot prior to dx and when things were off.
Let her pulmo know about it as well as anything else.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Something else to remember is that any time a new med is introduced, blood tests will be done more frequently to monitor possible side effects.
 
D

DanceMom

She woke up at 4 AM with a temperature of 102.4. Would she have a fever that high from a flare or is this likely some sort of virus as well? She seemed to be following the exact same pattern she typically does for a flare but she doesn't usually have any sort of fever with it.
 
Hope345

Hope345

Our daughter had her first temperature since being diagnosed with Crohns about a month ago. It lasted for one week off and on. No other symptoms. There was a flu going around that had only that symptom "I heard", so I wasnt concerned it was Crohns. But low and behold, she did have a flare 2 weeks later. Not sure if a virus set off the flare, or the temp was due to the flare. The GI nurse thought a temp without other noticeable flu like symptoms probably had something to do with Crohns.
 
D

DanceMom

Well, I decided I would call the GI and let the nurse know exactly what was happening so they could decide what was best for her. I called on my way home from work and on my way to pick up A from my Mom's house. She said it sounded like a virus (sometimes I think she brushes me off because A's case doesn't seem severe enough) but that she'd get with the doctor and call me back. As I walk in the house A is screaming, "Somebody get in here and look at this!" So I run to the bathroom and look in the toilet and there is blood, lots of blood. It is mixed in with the stool, which is formed, but it is undeniably blood. A doesn't usually have blood in her stool, and if she does it is always questionable as to whether it is really blood because there isn't much of it. So I took a picture as "evidence" because I didn't want to feel like I was being brushed off again.

The nurse called back just a few minutes later and I told her the new news. She said that the doctor was debating on putting her on probiotics or starting something similar to an antibiotic (the name of the med started with an "f"....fluoro something I believe....) because he thought the bacterial overgrowth was probably back (at least he didn't think it was a virus!). But with the bloody stool she thought it was best that A be seen as soon as possible so she's going in tomorrow afternoon.

I admit, I'm very freaked out by the blood and high fever because those aren't typical symptoms for A. At the same time, I'm glad the blood happened (and I could get a pic of it) because I think it proves that this is more than just a virus.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Very scary. We haven't had to deal with blood either. I know it would be unnerving, but I would comfort myself that a lot of others have had to deal with it, and it will be part of the package.
 
Hope345

Hope345

Dancemom,

Blood has been an issue for our daughter for 2 years. Lots of it. In B's case, she has Crohns in three parts of her colon, including the descending colon and rectum. What helped the most was cortifoam. We started it 2 months ago and the blood, pain and mucous stopped over night.

Let us know how she is doing. Hopefully they do a stool cult. and check for C.diff as well. Our GI is always running those.

hugs to you both
 
D

DanceMom

Quick Update: GI is checking for C Diff and ordered a Sitz Test. He thinks she's constipated. After the C Diff test she is to start Florastar for a month because he thinks the bacterial overgrowth is back. I'm annoyed.
 
my little penguin

my little penguin

Moderator
Staff member
Hugs ...
So sorry ...
Can you get a second opinion at an improve care now center??
Or major Ibd center ?
ImproveCareNow is working to transform care, health and costs for all children and adolescents with Crohn's disease and ulcerative colitis. Since ImproveCareNow began, the percentage of kids enrolled in the program who are in remission (feeling well, no symptoms, fully active) has increased from 50% to over 75% – all without new medications.
ImproveCareNow is a non-profit that relies on the generous support of donors, funding from grants and participation fees paid by care centers in our network.


Care Centers
The ImproveCareNow Network includes 51 participating care centers (listed below), spanning 28 states and London, England.

Arkansas

Arkansas Children's Hospital Little Rock, AR
California

Children's Hospital & Research Center Oakland Oakland, CA
Children's Hospital Los Angeles Los Angeles, CA
UCSF Benioff Children's Hospital San Francisco, CA
Colorado

Children's Hospital Colorado Aurora, CO
Connecticut

Yale-New Haven Children's Hospital New Haven, CT
Delaware

Nemours Children's Clinic | Alfred I. duPont Hospital for Children Wilmington, DE
Florida

Arnold Palmer Hospital for Children Orlando, FL
Georgia

CHOA - Children's at Egleston| Emory Children's Center Atlanta, GA
CHOA - Children's at Scottish Rite Atlanta, GA
Illinois

Advocate Children's Hospital, Oak Lawn Oak Lawn, IL
Advocate Children's Hospital, Park Ridge Park Ridge, IL
Children's Hospital of Illinois | University of Illinois Peoria Peoria, IL
Indiana

Riley Hospital for Children Indianapolis, IN
London, England

Great Ormond Street Hospital London, England
Maine

Barbara Bush Children's Hospital at Maine Medical Center Portland, ME
Massachusetts

Baystate Medical Center Springfield, MA
Boston Children's Hospital Boston, MA
MassGeneral Hospital for Children Boston, MA
Michigan

Helen DeVos Children's Hospital Grand Rapids, MI
University of Michigan | CS Mott Children's Hospital Ann Arbor, MI
Minnesota

Mayo Clinic Rochester, MN
University of Minnesota Minneapolis, MN
Missouri

Children's Mercy Hospital Kansas City, MO
St. Louis Children's Hospital | Washington University St. Louis, MO
Nebraska

Boys Town National Research Hospital Omaha, NE
Nevada

Pediatric Gastroenterology & Nutrition Associates Las Vegas, NV
New Hampshire

Children's Hospital at Dartmouth Lebanon & Manchester, NH
New Hampshire's Hospital for Children Manchester, NH
New York

Children's Hospital at Montefiore Bronx, NY
Kravis Children's Hospital at Mount Sinai New York, NY
North Carolina

Levine Children's Hospital Charlotte, NC
University of North Carolina at Chapel Hill Chapel Hill, NC
Ohio

Cincinnati Children's Hospital Medical Center Cincinnati, OH
Nationwide Children's Hospital Columbus, OH
Rainbow Babies and Children's Hospital Cleveland, OH
Oklahoma

Oklahoma University Medical Center Oklahoma City, OK
Oregon

Northwest Pediatric Gastroenterology | Randall Children's Hospital Portland, OR
OHSU Doernbecher Children's Hospital Portland, OR
Pennsylvania

Children's Hospital of Philadelphia Philadelphia, PA
Penn State Hershey Children's Hospital Hershey, PA
South Carolina

Greenville Children's Hospital Greenville, SC
MUSC Children's Hospital Charleston, SC
Texas

Cook Children's Fort Worth, TX
Dell Children's Medical Center of Central Texas Austin, TX
Texas Children's Hospital Houston, TX
UT Southwestern Medical Center | Children's Medical Center Dallas Dallas, TX
Vermont

Vermont Children's Hospital at Fletcher Allen Burlington, VT
Virginia

Children's Hospital of the King's Daughters Norfolk, VA
Click to expand...
From:
https://improvecarenow.org/about/who-we-are
 
my little penguin

my little penguin

Moderator
Staff member
Keep in mind most 2nd opinion places take about three months to get an appt from when you contact them.
So if you start now you can always cancel later if you don't need it kwim.
 
D

DanceMom

This doctor does specialize in IBD and for whatever reason he doesn't think she has it. Instead, she's constipated, has IBS, has SIBO, she's dehydrated, and has a virus. I'm just really angry right now because she continues to have bloody stools and cry that she's in pain and all I have to offer her is a glass of water because the doctor says she's dehydrated. And don't even get me started about the $80 probiotics that the insurance won't cover.....
 
D

DanceMom

This is our second opinion, lol. I want to trust this doctor because I like him. He takes time with us and I believe he really does want to get A healthy. I just think he's being overly cautious with diagnosing IBD. Because her MRI and biopsies were iffy and her fec calp was within normal limits he just isn't convinced.

I will look into Arnold Palmer. In the meantime I have no choice but to trust this doctor and play the game.
 
my little penguin

my little penguin

Moderator
Staff member
Never easy
DS had normal scope
Normal mre /ct
Blood work normal

But has chronic inflammation on his biopsies as well as alot of EIM's that the do. Could objectively see vs self reported .
 
D

DanceMom

A's biopsies showed chronic as well as acute inflammation but apparently it was not severe enough to be considered IBD. Her biopsies 1 year prior didn't show any inflammation despite her symptoms so perhaps we are headed in the right direction as far as a diagnosis is concerned.

I suppose what made me so angry is that he changed the game plan. Because she responded so well to the Clindomycin he is now thinking that her problem is SIBO and not IBD. Not sure if SIBO can explain the inflammation in the colon and rectum but.....
 
Hope345

Hope345

Have you been able to see the colonoscopy yourself? If it is patchy inflammation then that is often how they diagnose Crohns. If you see inflammation, then a clear area, then more inflammation....
If he thinks it is bacteria overgrowth, it could still be crohns, what does he think crohns is?

You also might look into Dr Borody's approach to IBD. He does what he calls an ANTI-M.A.P. treatment. He also believes IBD is caused from a bacteria overgrowth and treats with three antibiotics over a 2 year period. It has been very successful.

You could still use the cortifoam along with this treatment.
 
D

DanceMom

Okay, I'd like to post some info directly from the scope pathology report and maybe you all can help me sort through it. I'm new to this game, lol.

Terminal Ileum Biopsy: focal cryptitis
Cecum Biopsy: patchy mild increase in the density of intraepithelial lymphocytes
Transverse and Descending Colon Biopsies: patchy mild increase in the density of intraepithelial lymphocytes
Rectosigmoid Biopsy: benign colonic mucosa with patchy increase in mucosal eosinophils

The focal active inflammation in the ileal biopsy as well as the patchy inflammatory changes are of uncertain significance. There is a patchy increase in the population of eosinophils in all the colon biopsies but it is more pronounced in the rectosigmoid biopsy. These may reflect a resolving/evolving inflammatory or infectious process.
 
D

DanceMom

Julie, I sorted through the info in the link and I suppose I see why a diagnosis of IBD was not made. Granulomas were not reported and that seems to be a key feature for CD.

I'm still unsure of what focal cryptitis is, or what patchy increase in mitotic activity in the crypts means.
 
my little penguin

my little penguin

Moderator
Staff member
The problem is most pathologist have boxes to check in order to give a dx of crohn's via biopsy.

Many patients do not have granulomas found but still have crohn's.

We were lucky ( haha ) in that multiple granulomas were found during DS first colonoscopy.
This made is easier for the three seperate gi's and two different pathologists to agree DS had crohn's.
Did I mention we got a few opinions early on??
We still adore DS's Gi but with atypical presentation even he wanted to be sure.
Never easy
 
CarolinAlaska

CarolinAlaska

Holding It Together
DanceMom said:
Okay, I'd like to post some info directly from the scope pathology report and maybe you all can help me sort through it. I'm new to this game, lol.

Terminal Ileum Biopsy: focal cryptitis
Cecum Biopsy: patchy mild increase in the density of intraepithelial lymphocytes
Transverse and Descending Colon Biopsies: patchy mild increase in the density of intraepithelial lymphocytes
Rectosigmoid Biopsy: benign colonic mucosa with patchy increase in mucosal eosinophils

The focal active inflammation in the ileal biopsy as well as the patchy inflammatory changes are of uncertain significance. There is a patchy increase in the population of eosinophils in all the colon biopsies but it is more pronounced in the rectosigmoid biopsy. These may reflect a resolving/evolving inflammatory or infectious process.
Click to expand...
It's pretty much Greek here as far as what it would mean...
 
Farmwife

Farmwife

So our kids are really in the same boat, eh? (I'm not Canadian but I live close enough I feel I can use, eh.)

Remember that it still could be UC.
 
D

DanceMom

Well, we just collected stool for the C Diff test and I see that she has already passed about 5-6 of the 20 or so sitz markers that she swallowed this morning. So I don't think constipation is the issue (I never really thought that it was). I must say though, I used to gag and practically heave doing these stool samples, but now I can scoop poop like a champ! lol
 
Hope345

Hope345

I hope it is not Crohns. But sometimes it can be difficult to diagnose. Let us know how the C. diff comes out.....

yes, I have looked at more poo in the last year than I can count-lol.
 
D

DanceMom

Well, A was feeling better Friday morning and started the Florastor. Saturday was a bit of a rough day as she just seemed generally down and unwell. Today she was feeling better but still not quite her happy and perky self. Oh, how I want my baby back!

Something interesting...she woke up Tuesday with what appeared to be pink eye. Her eyes were a glossy red color, one worse than the other. Around her eyes was a deep purple color. There was no real discharge from her eyes but she said they were quite painful. I bought some OTC eye drops for pink eye and by Friday morning her eyes were clear and felt better. A has never had pink eye but my younger daughter had several cases of it. M's eyes were always crusty and itchy, A's were not. Could this eye issue possibly be related to her GI symptoms? Do IBD eye issues come on so suddenly and disappear within a few days?
 
Hope345

Hope345

Regarding eyes: Baylee has had it happen twice. With her it has been episcleritis. It usually happens with her right before a flare. Her GI had her see an Opthomologist. With Baylee it only lasts about 1 week and then fades away.

How did her C.Diff come out?
have you heard anything more from the doctor?
 
upsetmom

upsetmom

Location
,
Dancemom...we saw our GI last week and one of the questions they asked was has she got any problems with her eyes...so eye issues must be fairly common with IBD.
 
DustyKat

DustyKat

Super Moderator
DanceMom said:
Julie, I sorted through the info in the link and I suppose I see why a diagnosis of IBD was not made. Granulomas were not reported and that seems to be a key feature for CD.
Click to expand...
It is unfortunate in many ways that granuloma's are often the clincher when it comes to a diagnosis of Crohn's. I say unfortunate because granuloma's are present in only 40-50% of cases. My son does not have granuloma's either so pathology never supported a diagnosis of Crohn's but his GI and surgeon agreed that it was Crohn's and he certainly does have it.

Eye issues are a common EIM (Extra Intestinal Manifestation) with IBD. My daughter did suffer with them, she would get sore eyes but there was nothing to see with hers. The problem did come and go though, so one day it would be bothersome and then fine the next.

I hope you soon have solid answers and your daughter finds lasting relief, bless her...:hug:

Dusty. :heart:
 
D

DanceMom

We just turned the stool sample for C Diff in on Friday. The doctor said he'd call with the results of that and the Sitz test some time this week (we get the x-ray this afternoon).

I reported the eye problem on her paperwork and it was quite obvious when looking at her but the doctor did not mention it.
 
D

DanceMom

We did the x-ray today. My non-expert eyes didn't see any rings. We'll see what the professionals say.

Meanwhile, more bloody stool tonight....
 
D

DanceMom

Eh....I've been better, lol. Last week (on my wedding anniversary) we found out that my youngest daughter has OSA again. She had her tonsils/adenoids removed but perhaps the adenoids have grown back.

A seems to be feeling okay despite the bloody stools. Well, she says she feels okay but she sure is irritable. One child that is sleep deprived...another that probably doesn't feel as good as she thinks she does.....and one tired Mama! lol
 
D

DanceMom

Last Wednesday she had to swallow about 20 tiny rings and today she went in for an x-ray to see if they passed through her system yet. Her GI is convinced she's constipated. I suppose it fits nicely with his IBS diagnosis.
 
CarolinAlaska

CarolinAlaska

Holding It Together
I've not heard of that one. It must be some kind of motility test. Is he doing other markers of inflammation like fecal calprotectin?
 
my little penguin

my little penguin

Moderator
Staff member
Hugs dancemom
It really makes me upset that some Gi s do not associate constipation with Ibd
When so many many kids on here alone are constipated and have been dx with......
Ibd .
 
Hope345

Hope345

Dancemom, I agree with MLP. Our B had not pooed in 3 days. It is not constipation unless they are hard BM's. bloating is uncomfortable. I dont think some GI's really know how many different symptoms each child can have. meds play a role, where the Crohns is, if they are flaring.... Our daughter never has diarrhea, but she has Crohns. wouldnt it be so great if the doctors read some of our posts? they would learn more in one day than they learn in a year. my opinion of course. sometimes seeing what our kids actually go through on a daily basis would give them so much more to work with.
 
D

DanceMom

Carol, she did have the fec calp and it came back well within normal limits. He told me had it not he would feel more comfortable diagnosing it as IBD.

I've never thought A was constipated but the GI has, from day 1. Even when she was going 4-6 times a day he claimed she was constipated. Now she is going 1-2 times a day and her stools appear rather normal other than the blood.
 
my little penguin

my little penguin

Moderator
Staff member
Normal fecal cal here , normal MRE, normal CT,visualy normal scope-- need I go on...
simply put there in not one definitive test to RULE OUT cronh's
but a combo of tests can rule it in KWIM.
hugs
 
D

DanceMom

Well, as the GI keeps saying, "This is one more piece to the puzzle." I'm hoping he starts putting the pieces together really soon! Prometheus lab indicates Crohn's markers...MRI shows possible thickening and inflammation in TI...biopsies show inflammation and bacterial overgrowth...FTT multiple times...bloody stool...chronic diarrhea....headaches/stomachaches....

And now.....pink eye AGAIN!
 
Hope345

Hope345

Hope you get your diagnosis soon. I know you just want your daughter better again.

have they started her on antibiotics? If she can tolerate yogurt with live bacteria, that would might help too.
 
D

DanceMom

Hope - she did a round of Clindomycin and responded really well to that. In fact, she was the best she's been for years until about a week and a half after finishing it. Then she started going downhill again. The GI doesn't want to keep her on such a strong antibiotic so he prescribed Florastor (probiotic) instead. So far I really don't see any benefits from it.

I'm still waiting on a call with the Sitz test and C-Diff results but I expect them both to be negative.
 
D

DanceMom

Ugh! The diarrhea started Friday morning. Yesterday she seemed to feel okay, even played outside in the sprinklers. I did notice she didn't eat much though. Around 2 AM this morning she ended up in my bed, crying that her belly hurt. By 9 AM she was having coughing fits and needed a breathing treatment. Her asthma and stomach issues usually tend to flare at the same time and that makes things twice as bad. So frustrated for her.
 
D

DanceMom

Question: When your kids have bloody stools is every stool bloody?

A had bloody stool on the 5th (formed), diarrhea started on the 8th, and now on the 10th we have bloody diarrhea. I'm confused that not every BM has blood. Is that typical (well, as typical as bloody stools can be....)?
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
My son's weren't always bloody. He has also had an occasional bloody stool after months w/o blood. I don't think he has ever achieved 100% remission though.
 
my little penguin

my little penguin

Moderator
Staff member
DS has occasional bloody stool - not daily. he can be fine for days then blood two days then nothing for a week or more then all over again-
makes things interesting

keep in mind some ASA can cause bleeding as a side effect as well.
 
D

DanceMom

The whole bloody stools thing is relatively new for A. I assumed if one stool was bloody they'd all be bloody until something was done to treat it. Guess not.

The only thing A is taking right now is Florastor (probiotic) and Albuterol as needed. Because her asthma seems to be an ongoing issue now hubby and I have decided to start her back on a daily inhaler tomorrow. She hasn't been on one for quite some time. We are going to try QVar80 to start out with, something relatively mild. Hopefully that helps. The Pulmo loaded us with samples in case we decided to put her on something again. He wasn't too thrilled about us taking her off but she did well for over a year without daily meds.
 
my little penguin

my little penguin

Moderator
Staff member
IF her asthma is flaring- please give the pulmo a call-
what was good a year ago my not be what the doc would want now-
ie she may need a steriod burst prior to just maintenance meds to maintain control.
Even mild asthma can kill ( the odds are acutally higher with mild asthma )

(not a doc just a mom - so please call here pulmo ASAP -on what to do)
 
D

DanceMom

She's seen the Pulmo several times since stopping the Advair. His orders were to use Albuterol with a cough and start back on QVar if and when we felt it was necessary. We no longer see that Pulmo (long story but he wasn't treating my youngest daughter's OSA properly) and A has not yet seen the new Pulmo at Nemours. I plan on making her an appointment soon.
 
tnsunshine

tnsunshine

I know from past experience with my daughter that when I thought she was just going into a flare it turned out to be strep throat! She wasn't complaining of a sore throat at the time but her stomach and running a fever. It could be strep but usually with my daughter she gets this during this time of year and then it sends her into a flare. They have started now giving her the antibiotics to combat the strep and then a probiotic to help with her stomach .
Good Luck!!
 
D

DanceMom

The GI nurse finally called. The x-ray did not show motility problems but did show that A was SEVERELY constipated. One of the worst cases she's ever seen apparently. She is completely backed up and this is likely why the lungs are inflamed. So, we have to start a clean-out tonight and then start a daily dose of Miralax and Ex-lax. Apparently the stool is so large and so hard it has caused bleeding somewhere in the colon? Does that sounds right? Anyway, her diagnosis has been changed to IBS-C. That made me chuckle.

Oh, and no c-diff.....
 
Farmwife

Farmwife

Well I'm glad for know it looks like an easier fix. I know Niks daughter is having the same thing. Hers got so bad, well let's just say were glad she's alive.

Are you going to be making any diet changes?
 
Niks

Niks

Are they starting on enemas? Jaime had them twice daily for two weeks and now still once a day!!

Hers was so bad she was vomiting everything she ate. We have now been told to stick on a low fibre diet!!

Really hope you find the cause of her problems , I know from experience that it can take so long to get answers

:hug:
 
D

DanceMom

After the clean out I am to give her 2 ex-lax chocolate squares and 2 capfuls of Miralax daily. The nurse said we need to retrain her bowels. I will ask about diet changes when she has her appointment in 2 weeks.

I really think the nurse and doc think that she holds it and causes herself to be constipated. In the medical setting she presents as this anxious and shy little girl, perhaps even embarrassed. Outside of the medical setting she is anything but shy about her issues. In fact, she went into her dance class this afternoon and proudly announced, "Guess what? I'm full of crap and I have to start my clean out tonight!"

Niks - I've been reading about your daughter and I'm so sorry for what she's gone through. A hasn't vomited but does seem to have frequent wet burps as well as excruciating chest pains. Did your daughter have that as well?
 
Niks

Niks

She has recently had chest pain and tightening! And lots of burps. She never burped before all this!!

How are they clearing out?
 
Farmwife

Farmwife

DanceMom said:
Outside of the medical setting she is anything but shy about her issues. In fact, she went into her dance class this afternoon and proudly announced, "Guess what? I'm full of crap and I have to start my clean out tonight!"
Click to expand...
:rof:

I'm sorry she's going through this but I love her attitude.
 
D

DanceMom

Well, we started the clean out (Miralax & Gatorade). She's supposed to have 32 oz gone in 3 hours and that just isn't happening. I'm hoping for 4. She just vomited, rather explosively, and feels a tad better. She vomited last clean out so that doesn't worry me, but what does concern me is what the vomit looked like. Obviously there was a lot of Gatorade, but there was also a lot of thick, brown, mucousy and stringy stuff that looked like feces. It had a fair amount of blood in it. Anyone ever had this before?
 
D

DanceMom

Just called the GI (he happened to be at the hospital). A continues to vomit feces although I haven't seen any more blood. He recommended going to the ER so they can check for an obstruction and possibly admit her for a clean out. He did say the ER is slammed right now so I'm giving it a bit at home to see if the vomiting stops and the BMs begin. It is over an hour drive to the ER and my husband is at work so I'm home with the kids on my own. This was supposed to be a simple clean out.....
 
Catherine

Catherine

Moderator
If you don't want to take your other child with you to the ER (if you go). Maybe should start making arrangements now.
 
Hope345

Hope345

I am so sorry to hear about all of this. Please let us know how everything goes at the ER.
we are thinking of your daughter and your family.
 
Sascot

Sascot

Sorry to hear things are not going well. Hope they manage to get the clear out going at the ER and you don't have to wait about for too long!
 
Niks

Niks

Bless her!! J has vomited blood too , only once vomited faeces.

Sounds like she does need admitting for a proper clean out. Poor thing. Would definitely take her. Good luck, keep us updated xx:kiss:
 
D

DanceMom

Went to the ER and the doc called her GI directly for orders. They gave Zofran pretty quickly. Took an xray which did not show an obstruction. Gave 2 enemas and felt she was cleaned out in the bottom half. Made sure she could hold down some apple juice and sent us home to rest and wasn't for further instructions from the GI nurse. A is sleeping peacefully for now.
 
Niks

Niks

I really hope they're right.it took a week of enemas twice a day to clear j.. Poor thing. Hope she's feeling much better xx
 
D

DanceMom

The nurse called (the GI had sent her an email telling her to call and check on us...I think he does surgeries on Thursdays). She said that according to the ER doctor's notes they didn't get much out of her and she is still very full. We were discharged because she was not in acute danger. Nurse said to keep her on clear liquids and give her Zofran until she can speak with the GI and get the next plan of action. A had 2 spoonfuls of chicken broth and a sip of water. She isn't interested in much more. Hubby went to go get the Zofran. She says her stomach hurts but she is watching TV fairly comfortably for the time being.
 
D

DanceMom

The nurse called back. Said her and the GI reviewed the xray from last night and they felt that it was relatively normal, nothing to be concerned about. They had no explanation for why she didn't tolerate the clean out. They want her to start the Miralax/Ex-Lax regiment tonight. Not sure why if she is no longer considered constipated.....

A is eating solids now for the first time since the failed clean out. She said she was starving. I'm so fed up with this whole situation and just want to know what the heck is wrong with my child!
 
CarolinAlaska

CarolinAlaska

Holding It Together
How is A doing? Any more movement? I didn't figure that would be an easy clean-out if she is so severely constipated. I'm sorry she had to go through that. Have you heard back from GI yet? What is the plan now? I wonder what is up with the discrepancy of the "she is half-way cleaned out" and "not much out". That would make me mad. :ymad:
 
D

DanceMom

A started the Miralax/Ex-lax last night and did have a little diarrhea before bed. She slept through the night and I'm letting her sleep in today because she seems just exhausted. I think the ER visit wore us all out. She has a dance competition this weekend and I'm just hoping she feels well enough to perform her best. I know I feel extremely stressed and frustrated!
 
CarolinAlaska

CarolinAlaska

Holding It Together
I hope things start moving and gives her a lot of relief. I think constipation is one of the worse feelings in the world and I've never had it anywhere that bad... :(
 
Sascot

Sascot

Sorry to hear your poor girl is still struggling. I remember when we didn't know what was wrong with my daughter they kept saying she was constipated even though xray was ok and her tummy was soft. We were told to keep giving her Movicol up to 8 satchets a day. It is frustrating doing that when you are not sure if it will help or not. I suppose at least it has a chance of working and it won't do any harm.
Hope they come up with a better plan soon!
 
D

DanceMom

A had a stooling accident last night. First one in a long time. She practically cursed the Ex-Lax when she took it this morning, lol.
 
D

DanceMom

Another question....do any of your children have skin issues associated with their IBD?

A has something going on on the back of her left leg and buttock and I'm not quite sure what it is. A few months ago they seemed to spring up almost overnight. They were flesh colored bumps, couldn't be popped or anything. They didn't hurt or itch so I assumed they were warts (she'd had some on her hands in the past). Well, now they have grown some in size and the area around them appears red and swollen. Some even look like they have crusty scabs on top. When I ask her about them she says they are painful. If I don't ask she doesn't mention them.

Anyone have a clue what this could be?
 
D

DanceMom

Hmmm......that could be it. She's had these for several months but they only recently started looking really bad. Because of them she always wears tights at dance and she's embarrassed to be in a swimsuit. She thinks they look like bug bites.
 
D

DanceMom

No, not pustules really....but some of them do seem to have a scab on the top. I think she may have scratched at them. Not sure. They are definitely more inflamed today and seem to be spreading to the other cheek/leg as well.
 
Farmwife

Farmwife

Could this be a reaction to the Miralax or X-Lax?

Sounds like what mlp said.
Make sure to take a picture. Use a pen and mark a out line of the rash. As it grows add more lines and take more pictures.
 
D

DanceMom

She's had some of the wart like bumps for months. Only in the last few days have they become red and swollen. There's got to be at least 30 of them now.
 
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