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01-28-2012, 11:37 AM   #1
polly13
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3 year old Lucy

Hi everybody

First of all I must say that I am delighted to have finally found a forum that has a dedicated section for parents of childrens with IBD and I think it will be great to get insite from other parents with children suffering from this condition and perhaps give some insight to others myself.

Our story so far is that My 3 year old daughter Lucy has Crohn's disease, she was diagnosed at 2.5 years by a wonderful doctor in Dublin, Ireland. Lucy's problems started when she was just one and a half, it started with her screaming when she was going to the toilet and she would go to the toilet 4 -5 times a day.

On taking her to a general paediatrician in our local hospital, he diagnosed that she was constipated and constant symptoms she had were from overflow, he also suspected coeliac disease but test for this came back clear. We continued with this diagnosis for almost a year, with lucy getting worse with with every day and losing weight and energy, she then started to bleed after every bowel motion, and she was diagnosed with having a severe anal fissure, and surgery was scheduled to fix this. During the surgery they found 5 such fissures in her anus and rectum and of course then Crohn's disease was suspected. We were then referred to the specialist centre and a paediatric gastroenteroligst who was able to diagnose Crohn's from the pictures of the fissures and the sores in her mouth. Colonoscopy , endoscopy and biopsies followed to confirm the diagnosis. That all happened in June 2011.

She was put on the usual antiobiotics after that and went into remission for a few months - we were thrilled as we had forgotton what it was like to have her well, she put on a few pounds and we were all delighted. She then had another flare up which started in October 2011, this was treated with antibiotics first, then steriods (all to no avail) so we are now starting on an imunosuppresent drug Mercaptopurine this weekend and will hope for the best. Her disease is confined to the peri anal area with some mouth sores at the moment.

Lucy is one of the youngest children in Ireland diagnosed with the disease approx 5 children under 5 have a diagnosis at this stage and I suppose for that reason I would reallylike to connect on line with other parents whose children were diagnosed at a young age and am really interested in finding out how the Crohn's progresses in real life people who are diagnosed so young. Our doctor promises us that they do very well, yet everything I read on the internet would suggest otherwise. I am also happy to share our experiences with the disease as it relates to our lovely Lucy.

Polly
01-28-2012, 03:20 PM   #2
DustyKat
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Hi Polly and

I'm so sorry to hear about your little one, bless her......but it is lovely to have you here.

My children were diagnosed much later than Lucy, 14 & 17 respectively, but there are other parent's here with younger children that will well be able to relate with what you are going through having a young child with Crohn's.

I think it is really difficult to get a accurate perspective of what happens in real life when you are on the net and on forums such as these. When people are unwell they tend to frequent the forums but when they are in remission, or feeling on top of things, they are out enjoying life, hence it would seem that most people with IBD are unwell much of the time. Certainly for some people that is the case but for many it is not. My own children, although older, are both in remission and living life to the full. They wouldn't give a forum a second glance at this point in their lives so I hang out here instead! I like to come here because it is a wealth of information and i am forever storing things away for future reference should the need arise. But more importantly the support is fab and I have made wonderful friends.

Did Lucy have a TPMT enzyme blood test before she commences Mercaptopurine (6MP)?

Both of my children are on 6MP's parent drug Azathioprine (Imuran) and have had great success with it following surgery. There is a sub forum here for both drugs...

http://www.crohnsforum.com/forumdisplay.php?f=64

I so hope this step up in treatment works wonders for Lucy and she is again feeling on top of things...

Welcome aboard Mum! I look forward to seeing you around.

Dusty.
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01-28-2012, 05:14 PM   #3
chrisnsteph1022
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Welcome! I'm so sorry you're dealing with this in your little one. I'm the one with Crohn's, and wasn't diagnosed until age 23. I just wanted to welcome you.
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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01-28-2012, 05:40 PM   #4
Johnnysmom
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Welcome and ((((hugs))))) to your little Lucy. My son was diagnosed at 11 in October and is currently on 6mp the med you mentioned Lucy would start. I know Johnny is a bit older but I just wanted to let you know how well things are going for him. He had a little nausea when he first started it but the Dr gave us a med that completely took it away. He doesn't have any issues with nausea now. Just be sure to follow the instructions on how this med is taken. We received no info from the pharmacy and the Dr went over so much I didn't realize how important it is. We give it to Johnny right before bed and he can't eat anything for 2 hours before or one hour after he takes it. Also dairy products block the absorbtion so no milk for 2 hours before she takes it. These were our instructions, yours may be different but I was surprised at how little info we received. Welcome to the forum!
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
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01-28-2012, 08:11 PM   #5
kimmidwife
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Hi Polly,
I just wanted to say welcome. My daughter is 14 who has crohns and was diagnosed at age 11. She was allergic to 6mp so was not able to take it. Good luck with it. I hope it works for you!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-28-2012, 09:04 PM   #6
izzi'smom
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Hi, and welcome! So sorry that you have to be here, but glad that you found the forum...it has been wonderful for me! My daughter was diagnosed just after turning four, but it has only been a year since diagnosis. She is by no means "well" in my eyes, but is considered "stable" at this point despite being refractory. We are still working on finding a treatment that works for her. Glad to have you here, and ((hugs)) to Lucy, poor sweetie!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
01-29-2012, 12:52 AM   #7
Brian'sMom
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Hi Polly,
Welcome from me also. My son was diagnosed at 10yrs, but showed some signs at age 6. (They were unsure at that time if it really was crohn's...he wasn't treated until things flared up again when he was 10). You'll love this forum. Its comforting here and informative. (And some threads even bring some laughter and distraction from it all as you get to know the parents and kids here!)
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-29-2012, 05:02 AM   #8
polly13
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Hi there

Thank you so much for you posts. We started the 6 MP this morning 0.5mg so a really low dose to start with.

Dusty - I dont actually know if they did that enzyme test but I know they did a raft of bloods two weeks ago so I am sure it was in there, because Ihad to wait for the results to start the drug. I am still a little shellshocked really - all I heard was ' not repsonding to prednisone and antibiotics, need to step up the treatment and the next thing I remember is increased risk of lymphoma. She is having bloods done every week for the next 6 and then every two weeks for a further 6 and then we are back to the GI for review. BTW - I ordered the book toilet paper flowers that you recommended on your sticky.

Thanks also for the links to the threads about the drug - looks like a mixed bag, but I imagine that is to be expected of a drug of this nature. Our GI assures us that he has 150 kids on it at any one time without any issues, the only issues he really sees are blood count dropping.

Good to hear johnny is doing well on the 6 mp.

Izzis mum - I read your thread about little Izzi - hope she is doing better now.

I am really struck by how knowledgeable you all are on here in relation to treatment and drugs -I suppose I will become that way over time, I think for the past few months, I have been somewhat in denial, especially as she went into remission so soon after diagnosis I genuinly thought - this is it her disease will be under control for years and we wont need to worry, so it was a huge blow when she flared so soon again, that and watching the pain on her face making a bm and the screaming associated - my heart breaks for her, so I am praying this new treatment will work for her.

Many thanks again
Polly
01-29-2012, 05:44 AM   #9
DustyKat
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Hey Polly,

Since you have had to wait for bloods until you commence the drug then I would say that the test has been done.

Their is an increased risk but most studies put that risk at 4 in 10,000 as opposed to the normal populations risk of 2 in 10,000. Did you see this link?...

http://www.ccfa.org/webcasts/Risk%20...Transcript.pdf

...others dispute these figures and say it is higher, I don't know but the risk seems to be higher in boys and in those that use a combination of Aza/6MP and a biologic and over an extended period of time. Then there is the risk of leaving IBD untreated or insufficiently so. Talk about between a rock and hard place! We know how hard this is for you Polly...
I think the key to a lot of this is the monitoring. I see your doctors are well on top of that and if things continue to go well and bloods eventually become further apart I would insist they don't go any longer than 3 months.

Nearly six years ago I was where you are now Polly, I knew nothing about Crohn's, I had barely heard anything about it. Now I say to doctors...tell me something I don't know about Crohn's! Seriously though, there is always something new to learn and much of it I learn here. If there is any advice I can give to a new parent it would be...

Read, read and read some more. Question, question and question some more. Knowledge is power and that gives you the opportunity to be the best advocate for your child you can possibly be. If you feel a doctor is dismissive, arrogant and/or incompentent of you and your child then don't hesitate to change or seek a second, third or fourth opinion. There is real peace and comfort in having your fears and feelings listened to and validated.

You are already doing a fab job Mum. I so hope this new treatment plan works for Lucy and gives her many, many, many years of relief and normality.

Dusty.
01-29-2012, 07:01 AM   #10
Dexky
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Hi Polly, welcome!! My son was dxed at ten and was first put on 6mp too. It worked great for him with no ill effects for 1.5 years but then began to fail. He has been on Humira since last spring and doing well now. I particularly agree with Dusty's assessment about reading other's experiences on the internet. Far too often one only finds the horror stories.

I well remember your fears about increased risks due to meds too, but the docs will keep a close eye on Lucy's bloods for a while to monitor the effects of the 6mp. If things begin to go south, they will quickly change course. Good luck and again, we are glad you found us!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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01-29-2012, 07:22 AM   #11
Veteran'Crohn'y
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Hi Polly,
I am so sorry to hear about your baby. What a lot for her to have to deal with, and you also. I don't have children, but started with my own Crohn's at a similar age to your Lucy, and remember well the probs that I had. I didn't get a diagnosis until I was 17. I am now almost 62, so I've had it quite a while, haha!! I have only just found this site, and it is amazing - there are so many people on here who know so much more than I do, even though I have had it for so long. So many treatments that I have never heard of, even after all these years!! I just wanted to say Welcome to the site, I am sure that you will get lots out of it, and I really, really hope that your baby gets better soon. Big Hug to both of you, hope there are better days in the very near future for you. Kathryn xx
01-29-2012, 12:47 PM   #12
dodie74
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Hi Polly, my son kian was diagnosed at 7 yrs of age. He had anal fistula at beginning and was very bloated. after all the test it came back he had crohns and was put on half sachet of salofalk 3 x a day and 6mp. He also started on a small dose as is now up to his maintenance dose of 1.3ml and touch wood he is doing fine. I worried so much too about the side effects of the drug but his ibd nurse assured us that the benefits outweigh the risks and now he a different boy. Eczema has disappeared and no more bloating, energy thru the roof too. Do u give your little un the 6mp before bed? someone on this forum had said to me at the beginning it best to give rite before bed as helps with any sicky feeling. seems to work for Kian. Wishing you all the best and hope her meds work soon. xx
01-29-2012, 03:18 PM   #13
Devynnsmom
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Hi Polly, my daughter Devynn was *unofficially* diagnosed at 8 years old in Dec 2009. She has been on Pentasa ever since (dosage upped twice) and has recently had another flare. She lost all the skin on the bottoms of her feet. Her symptoms started when she was approx 18 mos old. She would have constipation, mouth ulcers, rashes, fevers, etc. Things changed a bit to where she could go from being constipated to having diarrheah or a normal bm in one sitting. She is currently waiting on another upper and lower scope which is tentatively sched for Feb 23 (she is on a cancelation list to get in sooner). They want to scope her again while she is flaring. It is so hard to see our children unwell. Devynn has gone through stages (since starting pentasa) where she would seem well for a while, and then she would have horrible cramping, diarrheah etc again. Good luck with Lucy, I hope you get things under control.
This is an awesome forum by the way. I just recently found it.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-29-2012, 07:04 PM   #14
AZMOM
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Polly - Claire was diagnosed with arthritis when she was 3 and Crohn's just after her 6th birthday. The theory, now, is that even at 3, the arthritis was an extraintestinal manifestation of her Crohn's. As I look backwards over the years she was an infant with perpetual diarrhea, occasional refusal to walk, etc, I can see that it went on for a long time before we even knew there were issues.....

Hugs to you. Let us know how she's doing.

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
01-30-2012, 02:35 AM   #15
LilyRose
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Hello Polly,

Welcome to the forum. I am sure you will be it a great place of support. I know I felt such relief when I found this community - I really needed to be in touch with other parents who understood.

I know it would be very distressing to find out your little daughter has a chronic condition.

I too have a little one with crohn's. My son was diagnosed when he was 5 years old and is now 6. He too started with perianal disease and now has mouth issues, but no intestinal disease at the moment, and is really well in himself.

I think it is really hard to be faced with a diagnosis such as crohn's. I think it is quite understandable to feel like you are grieving for some time, and indeed when the condition flares I think it is normal to feel even more upset and emotional.

I think it is reasonable to give yourself permission to feel upset and sad at times. The condition itself is upsetting, and the treatments can have side effects/need monitoring.

The good news is that there are lots of people with crohn's disease who are getting on and living their lives to the full.

I hope you find this forum helpful and a source of infomation and comfort.

Best wishes,
LilyRose
02-03-2012, 02:33 PM   #16
Crohn's Mom
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Hi Polly

You have already been given some great advice by others, so I just really wanted to say hello, and welcome !
My daughter was suspected of having Crohn's at 9 years old, but not officially diagnosed until she was nearly 17 (2010). Now they have put into her medical records that she has definitely had it since she was 9, and possibly since birth. She did have many issues as an infant, but we usually thought it was "just another food allergy". It's definitely a very sneaky and unpredictable disease.

I wish you the best of luck and I hope the 6mp does well for your girl. Try not to worry too much about the "what-if" side effects; as others have said, and in my opinion, the risk of not treating can be far worse.

Again, welcome and we're glad to have you join us
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and Austin (18)
DX: Crohn's 7/2013
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