My poor 5 year old...I hope I didn't pass this UC on!

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Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 8/21/2009 6:30 PM (GMT -6)   
I don't really know what to do.

The poor kid has been uncomfortable for a week, saying her belly hurts. She has had soft stools / D for 3 or 4 times a day for that time, too. No blood that I can see. But I didn't have blood at first, either. She's not dehydrated, still eating, etc. Only complains for a few minutes before she has to go to the bathroom. She hasn't had any accidents, so I would guess it's not "urgency."

My husband says I'm crazy, that she is fine and we don't need to do anything about it, just watch it and make sure it doesn't get any worse, that I'm just worrying too much and obsessed with UC. I think she should be checked out by at least her pediatrician.

Who do you think is right?

What should I do?

Jen O
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 3000 mg per day
Multivitamin
Rite Aid Probiotic
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 8/21/2009 9:01 PM (GMT -6)   
My daughter was diagnosed at 5.  I would wait till Monday and then I would call my Ped.  If it is a bug, she should be better within a week.  By better I talking going less and less pain.
 
My daughter started the same way, but always had blood.
 
You may need a Ped. GI and will have trouble getting an appointment without a call from your Ped. or you can go to the emergency room at a hospital that has a Ped. GI department.  They can't turn you away.  This was how I got an appointment otherwise I had to wait 3 months.
 
Good luck.  Fingers crossed.
 
Joan
 
Daughter 7, UC
Asacol 2X2 plus 1x daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
calcium
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 8/21/2009 10:14 PM (GMT -6)   
Has she ever been on antibiotics? Were you on antibiotics at any time during your pregnancy?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/21/2009 11:28 PM (GMT -6)   
Since you have UC yourself there is a chance that your offspring could also develop an IBD (crohn's or UC) as well, if it were me I'd get her checked, infact, my own daughter (she's 19 yrs old) has been having some gut issues and I've already had her in for a colonoscopy (which thankfully came back clear) and she's going for an endoscopy sept 10...I have crohn's, my mom has UC...I'm hoping my daughter doesn't have either, hoping it's just a gut flora imbalance or something that will be easily fixable.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 8/22/2009 1:05 AM (GMT -6)   
I doesn't hurt to get her checked. If she has it, it's best to catch it early. If she doesn't, it will ease your mind.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/22/2009 1:31 AM (GMT -6)   
It could be food related, bug related, IBS related....all can be checked out.

When she says her tummy hurts...does she show you where?

She could be lactose intolerant or possibly drinks or even gum might have artificial sweeteners in them.

Do keep a total food diary of her intake......list foods, vitamins, treats, drinks, etc plus time taken on one side of a notebook, on the other side list the symptoms and bms plus time heppens.

There could be a correlation...sometimes can be figured out in a time correlation.


It would be best to get her checked out regarding stool samples, etc. and blood tests to make sure she hasn't picked up something. As well...get her checked out for h.pylori.

You'll have to be the detective and if indeed she has an IBD, at least you'll be more in the know.

Your husband will say what he did because it could be a simple thing....but saying whatever won't change the outcome if it is IBD.

Keep us posted as to how things are going with your daughter.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 8/22/2009 6:52 AM (GMT -6)   
Thanks guys for all of your advice.

Adam, you are always making things better with your funny comments! :) The car trip test would be much cheaper than a colonoscopy! :)

Her history:
she was born early, at 35 weeks. My water had broken about a week earlier and I didn't know it ("slow leak" they said, I thought I was peeing myself!) and she spent her first week in the NICU because she needed IV antibiotics as her white blood count was high, she was fighting an infection but they really could never tell me where it was. She also ended up jaundiced.

As she was that much early she was tiny. 6 pounds. She never wanted to eat. Had trouble gaining weight. I nursed her for her first year and introduced food at the normal times. She never liked baby food, fought with her with that a lot. Finally gave in and gave her regular food. That was much better. By 18 months old she still was only about 18 pounds I think. Our pediatrician at that time basically was accusing us of child abuse because she was so small. We switched peds around her 2nd birthday as he was not compassionate at all with what happened that week.

She had the normal childhood illnesses. A couple of weeks before her 2nd birthday she had a cold and a fever. She ended up having a "febrile" seizure. She was worked up for everything in the books but checked out fine. No problems since thankfully.

I think she has only been on antibiotics only once after her first week, for a double ear infection when she was 3 I think. She does have bad environmental allergies. We've tried all of the OTC meds and we were thinking about heading to the doc for a prescription.

She is still as skinny as a rail. But she's met all of her milestones (and by the way, taught herself to read, she's starting kindergarten this week but will move up to 2nd grade for reading!). She weighs just 34 pounds, I had her on the scale yesterday! I just punched her results into a BMI calculator: her BMI is 12.8, she's in the 0 percentile, and a girl her height and age should weigh between 38 and 45 pounds to be in the healthy range.

Quincy, she's not very good at pinpointing where exactly she hurts. I tried last night when she was complaining. She seems OK this morning. I'll have to keep an eye on her over the next couple of days. My husband is coming around and not making so much fun of me anymore the longer this goes on! :)

Thanks again everyone for your help and advice!

Jen O
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 3000 mg per day
Multivitamin
Rite Aid Probiotic
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/22/2009 7:13 AM (GMT -6)   
     Hi Jen.  I agree with everyone else in here, but also have her checked for Celiac disease.  A friend of ours had twin girls but one didn't seem to be gaining much weight and always complained of a "belly ache".  It turned out to be celiac.  She is still much smaller than her twin but they are now nine years old and she is doing fine.  God bless and good luck dear.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 8/22/2009 4:26 PM (GMT -6)   
All here have given great advice and worthy to research further. The reason I asked about antibiotics is because antibiotics are fungal metabolites, and fungal metabolites cause disease. Could be a fungal factor with your child's symptoms, even years after taking them. For me, my UC symptoms were fungus driven.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 8/22/2009 10:45 PM (GMT -6)   

A little known fact that my pediatrician told me is that a stomach bug can last up to two weeks.  The reason I know this is one of my kids always complains of belly aches.  I too had the same thoughts as you - that he might have gotten UC from me.  But I can tell you - after having him at the pediatrician numerous times and the pediatric GI around 4 times - he definitely does not have UC!  (knock wood!!)  But it is definitely nerve wracking for me every time he complains.  The doctor said it could be something he is eating - but we have never really been able to pinpoint it.  I had him tested for allergies as well - all negative.  I would suggest that you keep an eye on it for a couple of days and try to keep a food diary (we did this too).  If she is still complaining - I would take her to the pediatrician and see what he has to say.  Just on a side note - one of the biggest causes of belly aches in kids - and diarhea - is too much juice.  Does she tend to drink a lot of juice during the day?  Also  while the diarhea is going on - try to limit her dairy intake.  (That's what my pedatrician recommended the last time my son was having issues.  We kept him off dairy for around two weeks and reintroduced it.  Seems to have worked.)

Good luck!


Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/23/2009 12:05 AM (GMT -6)   
one thing to keep in mind that if one is predisposed to UC through heredity....something has to trigger the immune response..and a gut bug could do it.

I think that for many of us, the gut bugs we may have had initially were never dealt with, hence the urgency to get your daughter checked out and for sure stool samples done.

I would also suggest some sort of probiotics either now or eventually.
quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/23/2009 9:20 AM (GMT -6)   
I agree with the poter who said to have them test for celiac disease.  My little cousin has it, and he was always underweight and sick until he was diagnosed.  (diarreah, stomach pain, etc.).  As soon as they went gluten-free for him, he started gaining weight and feeling much bettere  The same kid who waighed 15 lbs at a year is now off the charts!
 
That said, my cousin lives in a small town in Ohio (with a small-town hospital) and they eventually got so fed up with no answers and docs that didn't help, that they brought him down to Children's Hospital in Columbus, where he was finally diagnosed. 
 
In the meantime, you could try a gluten-free diet for a week and see if it helps with the symptoms at all.  Just be careful, because gluten hides out in a lot of things you might not expect it to! 
 
Good luck,
Kelli
Ulcerative Colitis, dx in 1998 at age 18
Rowasa morning and night, Asacol 2x4
Allergic to Sulfasalzine
Now I take no meds or supplements (but some asacol on-hand if I feel a flare-up coming on)


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/24/2009 12:41 PM (GMT -6)   
I totally did this with my daughter when she was a baby--her first diarrhea illness and I had her into the Ped so fast! The doctor wasn't my normal doc and she was like, "Are you crazy? Oh! You have UC! No wonder you are freaking out."
I think it is normal for us to be worried and want reassurance that our children aren't being put through what we are. Let us know how your little sweetie checks out.
Amy
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (60 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 8/24/2009 2:54 PM (GMT -6)   
You guys will NEVER guess what the final decision on this one was:

So yesterday she woke up with a sore throat and an awful cough. She was achy and only wanted to be held.

I took her into the doctor today. Guess what he thinks is wrong: Swine Flu! Can you believe it? My kid with the healthy immune system who only stays at Grandma's all summer somehow on earth gets the darned H1N1 virus! And me with the "compromised immune system" who has to touch all of the snotty old people at work who hold onto used Kleenex, I'm fine. He says I would have come down with symptoms by now if I were going to get it.

They don't do "swabs" anymore unless the person is "really sick" They just classify it as a "suspected case." Since the "flu" is a virus, we've gotta just wait it out!

Thought you guys might wanna hear the update.

Jen
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 3000 mg per day
Multivitamin
Rite Aid Probiotic
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/24/2009 2:56 PM (GMT -6)   
Wow! Hope she feels better soon!
FWIW, try not to worry too much about whether or not you passed it on. I mean, I know I'd *much* rather be on this Earth and have UC than to not be here at all! And just think of the advancements they've made in medicine lately, and how much exciting stuff seems to be on the horizon!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 8/24/2009 8:25 PM (GMT -6)   
I feel your pain!  I think it is great you are trying to be on-top of her symptoms.  Maybe your Ped will agree to have her inflammation markers tested?  That is a pretty non-invasive way to find out.  Our daughter was diagnosed 12/08 when she was 10 1/2 yrs old.  She had some "stomach problems" for a few months that we thought were related to lactose intolerance and then went into full blown colitis symptoms at Thanksgiving of last year/   Other than that she had been a healty kid!  good luck to you - I know how stressful this can be on a family
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
2nd opinion March 2009 - diagnosis UC and not Crohn's
 
currently on 2400 mg Asacol & Rowasa 1x day


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 8/25/2009 12:12 PM (GMT -6)   
Glad to hear it is not IBD, but sorry to hear she has swine flu. It seems to be hitting children rampantly (no surprise given the shared germs in school, daycare, playgrounds, sports etc, but apparentlyit is also because their immune systems are less developed) and will probably infect almost all children and half the US population by next summer from what I hear. I just wish there was more guidance as to how at risk we IBDers on immune suppressing meds really are. The main fear I have of flu in general is simply that it flares me, period.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, hookworms, maybe surgery this year REAL soon
 
 


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 8/25/2009 2:47 PM (GMT -6)   
I, too, heard the stats that Probiotic quoted on the news this morning. Last flu season I was on Remi and I was afraid of the flu shot. As a healthcare worker, I am exposed to all sorts of stuff. When the hospital where I work first started offering the shots, I filled out the paperwork that you have to fill out when you "refuse" the shot. A month or so later (October, I think), my Primary Care doc talked me into it. I didn't have any ill effects from it and I didn't get the flu, so I guess it was OK. I'm on Azathioprine now, and I guess you immune system is less suppressed with the dosages that us UCers take, so I guess I"ll get the the regular flu shot. I hear through the grapevine that we will also have to the the Swine Flu injection, too, at the hospital. I just have worries about it.

Another statistic that I heard was that there was a previous Swine Flu 30+ year ago. If you were around then, you "might" have had it already and thus "might" be immune to it already.

I don't have enough experience myself with UC to know if the "flu" flares me or not. Thankfully only 2 "flares" so far.

BTW, my daughter is feeling better already. The only symptom she has left is a raspy voice and some chest congestion. She went to stay with Grandma today while I worked. So if this was the Swine Flu, it was very "self limiting" for her!

Jen
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 3000 mg per day
Multivitamin
Rite Aid Probiotic
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each

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