Sick Daughter - advice needed

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Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 8/23/2010 7:49 PM (GMT -7)   
Hi all. My eldest Daughter, who is just about to turn 10, has had ongoing problems for just over 2 years now. It involves excruitiating stomach pain in the lower right quadrant. That is the main symptom. Often there is no fever but there has been one occasionally. She has been to the hospital for this numerous times. Every time they have ruled out appendicitis. Last time we were there (about a month or so ago), I mentioned the possibility of a bowel problem as I have noticed that lately with the pain she also has a lot of wind. I did inform them that I have Crohn's to which they said she definitely doesn't have Crohn's. I was actually suspecting irritable bowel, but because I'm her Mother and not a medical professional I was treated like I'm an idiot.

She has had numerous ultrasounds which have only ever showed some fluid in her bowel loops (or what they could see of her bowel loops). Her last lot of blood tests were normal bar a slightly elevated crp (was 11.5). She rarely gets diarrhea, more often than not she seems to be constipated. Or just has trouble getting her poo out. The pain is what I would discribe as colicky, coming in waves rather than the constant sharp pain you get with appendicitis.

My GP seems to think it's a bowel issue too and referred her to a paed, but we've been waiting to see her for over a month now and can't see her till the 24th Sept, so I've been trying to manage the pain with panadol and buscopan until then (which doesn't really help her at all). I have spoken to my Specialist about it, to see what he thinks (and to see if I could get some advice), and he cannot understand how they could rule out Crohn's with out actually doing any "real" tests.

I feel helpless and it breaks my heart when she's in so much pain that she can't even eat anything (not that she's going to starve to death - she's not exactly a small girl - she's very tall and stocky for her age). I guess my question for those out there that have kids with IBD (or who were themselves diagnosed at a young age) is, what were your child's symptoms and what tests did they have done to make a diagnosis? I can't continue letting her just cope with the pain.

Thanks for reading all this.
Claudine
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.


Current meds: 6mp 150mg, Salofalk granules, somac, panadol osteo.

Failed: Vendolizumab clinical trial. Back on predisone, down to 35mg. Starting Humira in (hopefully) 4 weeks!

Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis. Now suffering from steroid induced diabetes (again)

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/23/2010 8:08 PM (GMT -7)   
Claudine - I'm sorry to hear about your daughter's troubles. It's terrible not to be able to help her when she's in pain. I don't have kids with IBD myself, but I wonder is it possible for your own specialist to see her even though she's a child? The right lower quad pain really sounds like ileum pain/inflammation. They would be able to see that with a colonoscopy. IBD runs in families (especially Crohns), so I can't believe that the docs you've seen so far haven't given that possibility more thought and/or credence. When someone has a chronic condition like Chrohns/UC, the patient is usually VERY well-versed in the condition, IMO sometimes even more so than general ER or general practitioner docs!

In any case, I hope that your daughter gets some relief soon(and you, too - stressing about her probably isn't helping you a whole lot right now either!) Take care.
UC dx in 1998 (age 18) - proctosigmoiditis, possible CD (untested)?
Allergic to Sulfa
1998-2009 Asacol 2 pills 2X daily - very sketchy about taking it...pretty much drug-free for a long time.
Aug 2009 - small flare - Mesalamine enemas for 2 weeks and 4 Apriso pills 1x daily...still a bit sketchy about taking the Apriso once the flare was done
August 2010 - Flaring again -taking Apriso every day!

Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 8/23/2010 11:00 PM (GMT -7)   
Thanks Kellie. No, the stress isn't good for me especially considering I've been flaring since April! My specialist is through a Hospital and they don't see kids there, but her appointment is through a childrens's hospital so hopefully they will do something. I will be pushing for some answers though, as I have illeo-colic crohn's so I get the pain down there and know what she's going through. I actually asked them if the pain could be inflammation in her illeum and they looked at me like I was mad!
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.


Current meds: 6mp 150mg, Salofalk granules, somac, panadol osteo.

Failed: Vendolizumab clinical trial. Back on predisone, down to 35mg. Starting Humira in (hopefully) 4 weeks!

Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis. Now suffering from steroid induced diabetes (again)

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 8/24/2010 12:55 AM (GMT -7)   
Hi,
I do feel for you both, it is so frustrating when you are not getting answers.
My son sufered with stomach pains for years and often would be starving but would be unable to eat more than a mouthful or two. He was a lot smaller in height than his peers and underweight for his height. There was repeated visits to the GP who was not concerned about his height/weight and said that if was not as if I was that tall myself(5'9") and despite repeat visits gave him 6 tubes of gaviscon for heartburn!! Son then was really poorly one day, was admited to hospital with appendicitis and had appendix removed(histology confirmed appendicitis) Great we thought, all this pain was rumbling appendix so things should now be OK-wrong!! Went back to GP ran through everything(yet again) and asked if it could be this or that(lots of internet research trying to find an answer) No said GP however this did prompt him to order blood tests (results were not normal) so he was then referred to a consultant. From that point things moved swiftly, more blood tests, colonoscopy(with biopsies taken) barium follow through x-ray etc, following which a diagnosis and more importantly treatment!
Advice-go with your gut instinct, you know your child. Ask for blood tests usually inflammatory markers will be raised, B12 low etc if this proves to be the case a referral to a specialist should follow. Next I believe some sort of 'visual' should be undertaken(like a colonoscopy) and biopsies of anything found would confirm a crohn's diagnosis.
I t appears that sometimes we have to 'jump through hoops' to get a diagnosis and treatment but it pays off in the end.
Since son's diagnosis Nov last year (and proper treatment) he has gained 25lb in weight and although still short he is now at the correct weight, colour has returned to his face, by in large he is pain free and for him he has 'normality'
in his life.
Keep pushing til you get answers. Good luck to you both

grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 8/24/2010 9:24 AM (GMT -7)   

I was diagnosed at 14, but remember having symptoms beginning in 6th grade (I was around 12, I think). Anyway, I also was tall and stocky, weighing in at 140 lbs and 5'7 at 13. I always looked healthy, but my mom couldn't understand why I would be hungry, sit down to dinner and only be able to manage a couple bites before the pain kicked in, looking at the food would make me nauseaus, and I would lose my appetite. Gradually I went down to 115 lbs, and the doctors kept telling her there was nothing wrong with me, that it was all in my head, that I had anerexia, etc. Finally, the Dr put me in the hospital to run some tests (I think he just got tired of my mom b*tching) did an upper and lower GI, and that was when they discovered I had crohn's. They sent me to a larger teaching hospital to an actual GI, who did the colonoscopy.

Just keep pushing them for answers. I know this is scary, for both of you. Because of your history, you know in your gut that there is more to this. If she goes in to the hospital again, insist on seeing the GI on call. They will be more apt to listen to your history and run the appropriate tests. Good luck to both of you!


Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, Glucosamine, D3, calcium, potassium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 8/24/2010 10:17 AM (GMT -7)   
Claudine, we are in the middle of figuring out my daughter's issues, but she's not in nearly as much pain as yours. My daughter is 10.5 and has been complaining of "stomach aches" forever. When she was an infant she had bright green poo as often as not, and occasionally bloody stool. I resolved to NOT put her through diagnostics until her life was affected by whatever was going on.

So when she was 8 and had to sit out her soccer games and trampoline team because of her stomach aches, we took her to the ped and she was told to take a ppi - Prevacid. That took care of a lot of her issues, but not all, and she stopped the meds.

Now she is very aware that she has reflux and will take her PPI every day. She still has stomach aches but they are much less severe.

She also now agrees with me that she has some degree of lactose intolerance and she'll avoid ice cream and milk to manage. She still eats cheese (like pizza and grilled cheese) but not a lot.

I will continue to wait on diagnostics, but our ped is ready to refer her out to a specialist the next time we go in. At our last visit with the ped (in July) she took blood and checked for H. Pylori (negative), complete blood count (OK), inflammation markers (negative) and celiac (negative). So what's next for us at a GI visit I guess would be some scopes, which I'd prefer to delay as long as possible. The ped also told us that more common than IBD are other dietary allergies like milk protein (not the same as lactose intolerance). For my daughter we might go down the path of removing dairy proteins from her diet before we do any scopes.

For your daughter it is time to step up the pressure. She already has inflammatory markers and pain, and her activities are affected. While you wait for your appointment you can try to manage her symptoms with some dietary changes like removing or reducing lactose and maybe even gluten, or putting her on a low residue diet. I hope she feels better soon, and I hope you can cope ok while you wait.

{{{{HUGS}}}}
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 8/24/2010 3:11 PM (GMT -7)   
My daughter also had very bad stomach pains, lost ton of weight, troouble pooing, and her vitimin levels were all off. With my history of UC, off we went to my city doctor, whom ran every test on her thinking it was Crohns. Turned out she was lactose intolerance and now as long as she stays away from dairy or takes the pills she is ok. She also has excess stomach acid and burbs alot, but does not take anything for that. While I am glad that that was all it was, because of my history she had to undergo all those lovely wonderful tests. It's really a shame that our children have to go thru all this.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions

DebbieCrohns
Regular Member


Date Joined Nov 2005
Total Posts : 174
   Posted 8/24/2010 4:09 PM (GMT -7)   
Hi Claudine,
 
I am very sorry your daughter is suffering.  I have a 28 year old daughter who was daignosed with Crohn's when she was 17 years old and I know the stress of having a sick child.  I found the DragonPack IBD Parent's Forum very valuable.  Link is http://www.dragonpack.com/ibdsupport/parents/
 
I hope your daughter feels better real soon.
 
Debbie in Chicago

Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 8/25/2010 4:15 AM (GMT -7)   
Thanks to everyone for your replies and support, this is why i love this place so much!
 
I will look in to lactose intolerance. That was one of my original diagnoses, and I think I got diagnosed with that around 4 times even though I told them I'd done the whole dairy elimination thing and it didn't help! She has been tested for Celiac but that came back negative. I constantly watch what she eats to see if anything affects her more, but the only thing I can seem to see is that high fibre foods upset her, which is the same as me (hence my concern!).
 
Thanks and I will keep you updated on our progress.
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.


Current meds: 6mp 150mg, Salofalk granules, somac, panadol osteo.

Failed: Vendolizumab clinical trial. Back on predisone, down to 15mg.
Starting Humira in (hopefully) 2 weeks!
Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis. Now suffering from steroid induced diabetes (again)

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 8/25/2010 5:33 AM (GMT -7)   
Moms are always right especially a Mum (You) who has IBD herself!!

My own Daughter had similar symptoms before diagnosis. She suffered from chronic constipation since birth. Her Ped kept writing it all off as something else or nothing. LRQ pain was written off as growing pains. It took blood and mucous in stool for Ped to finally refer us to a Ped GI who diagnosed her within minutes of first appointment and then confirmed his diagnosis with scoping later.

Turns out said Ped didn't even have a clue what Crohn's even was. Very sad for someone
in the medical field so long (not a spring chicken) and treating children no less. She did apologize vehemently afterwards when she learned of the diagnosis at my Daughter's final appointment with her before College and before switching to Adult medicine Dr.

Sorry that you may be looking at same diagnosis for your Daughter. I am hoping that it isn't, but keep at it until a conclusive answer is determined.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/25/2010 7:24 AM (GMT -7)   
I didn't read the whole thread. Has anyone suggested a food diary? Perhaps she has problems with wheat or something else?

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/25/2010 2:36 PM (GMT -7)   
MaryS, like your daughter, my daughter had constipation issues since she was little, but unlike your daughter, she didn't develop the LRQ pain until she was 16. And then came that loud stomach rumbling sound, which we now realize was due to the stricture she had developed. I dragged her from one doc to another, who were all clueless. 
 
We finally managed to get a referral to a specialist who ending up misdiagnosing her, when she was aged 17. Ironic, because he was a pediatric gastroenterologist specializing in Crohn's, who had even written a book on the subject!! He suggested she de-stress and eat more fiber, saying, "I see a healthy kid!" (Just thinking about it makes me want to smack him.) A year after seeing him, she landed in the hospital and was finally correctly diagnosed.
 
So Claudine, we're all on your side.
 
"I actually asked them if the pain could be inflammation in her illeum and they looked at me like I was mad!" Who knows? Maybe they were just surprised you actually knew the term "ileum" devil   
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 8/25/2010 5:53 PM (GMT -7)   
Hi Claudine,
 
I too have a daughter that starting showing symptoms at about 10yrs of age. I think you are getting some very good advise here. There are two very important things that you need to be very proactive about
First of all, you have to find a very capable Pediatric GI. You also have to make sure that their team of nurses and staff are very caring. 
Perhaps you can start asking around through friends, or nurses or hospital staff that you might be aquainted with. Even the internet Dr. ratings might help.
I'm sure that things will start improving once you get someone you can trust to care for your daughter.
The first things are going to be a Colonoscopy, endoscopy, and SBFT. Also, standard bloodwork for inflammation markers.
Good luck, hopefully you get some answers soon.
 
Tom.
 

Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 8/26/2010 9:23 AM (GMT -7)   
Thank you so much for your advise and replies, I'd be lost without this place and all your help.

njmom, you really made me laugh about the ileum! I sometimes forget I know so much about IBD, until I was talking to a Nurse today and she asked me if I worked in the Medical field! I am always worried I will come across as a know it all, but I just need to know for my own benefit (and now possibly for my Daughter's).

One thing I am is an extremely pushy Mother, and a stubborn Aries and not the type of person who will stop until I get an answer. When I do, I will update you all.

Claudine :)
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.


Current meds: 6mp 150mg, Salofalk granules, somac, panadol osteo.

Failed: Vendolizumab clinical trial. Back on predisone, down to 15mg.
Starting Humira in (hopefully) 2 weeks!
Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis. Now suffering from steroid induced diabetes (again)
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