03-17-2013, 03:58 AM   #1
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My son again

I am really concerned about my 12 yr old son. His endoscopies 3 weeks ago showed he has some inflammation in his small bowel.
Two weeks ago over the weekend he needed the toilet endless times, I am talking of maybe 15 - 20 times a day. His appetite had decreased dramatically. I informed the hospital, and they admitted him for 5 days. These were basically just monitoring him days.
In hospital he hardly ate. But to me this isn't being taken seriously. They say that the inflammation he has shouldn't cause the loss of appetite. The need for the toilet while in hospital went down to 4 -5 times a day. On the Thursday they started him on 40mg steriods a day, so we are now day 11 into them. He is also on 3000mg Pentasa a day.

Initially, for the first few days he responded to the steriods , he ate a little more and his energy levels went up slightly. I really thought we had turned a corner.

But for the past few days his appetite has decreased again, he is lucky to be taking in 1000 calories a day. He says he feels full really quickly and is getting stomach cramps. He has also been sick a few times, mostly bile. This has NEVER happened before. He has started going to the toilet more again, though this is more because he gets a "feeling" he needs to go rather than actually doing anything. He has no energy at all, he is not doing his usual after school activites as he just has no energy. These are things he has always really loved and he is usually such an active boy. He just looks so ill.

I feel he is detoriarting before my eyes, he has lost a huge amount of weight. In November he weighed 58kg, today he is 45kg.

We are back at the hospital for a check tomorrow, but I don't feel I can get through to these doctors just how ill my son is. I am taking photos with me this time to show the difference in his weight from November to now, to show them what he did look like.

I am so worried about him, I just don't know what to do. I know this is his crohns, but no one seems to want to help him.

Is there anyone who can throw some light on what the cause of this is? Something I can get the doctors to do something about?
03-17-2013, 04:12 AM   #2
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That is such a shame! Are you seeing his paediatric GI tomorrow? Sounds like he isn't responding to the Pentasa and needs something else. Try to emphasise his lack of "quality of life" - that is a phrase that sometimes has helped us get somewhere with the doctors. Has he had a faecal calprotectin done? I know that it takes a few weeks to get results, but it is one of the best indicators for increased inflammation. If they are not taking you seriously then it might be worth looking into a new paediatric GI. It is quite difficult to change docs in the UK, but not impossible.
Good luck for tomorrow!
03-17-2013, 04:21 AM   #3
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I know how it feels to not be taken seriously. It is frustrating and so worrying to see your child get sicker and sicker ..

Hopefully tomorrow you will get GI to listen. Have everything crossed for you. Otherwise seek a second opinion. Can take time but definitely worth it.
Good luck!!

Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

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03-17-2013, 04:34 AM   #4
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Thank you both. He did have a calprotectin test when he was in hospital, but no results yet.
I honestly don't know where else to take him. We are under Queens Medical Centre in Nottingham, which is meant to be one of the best. It is an 80 mile round trip for us each time.
I have left a voice message for the gastro nurse to see if she will see us tomorrow before our appointment. Yes, we are see the paed gastro doctor tomorrow. I just wonder what it will take to be taken seriously, I think J may have to collapse in front to of them to get anything done! And believe me I don't think he is far off that stage.
03-17-2013, 04:44 AM   #5
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At the risk of being a bit underhanded - why don't you talk to your son and make sure he really plays up how he's feeling. I have done that to my son and daughter after we tried to get help for over a year. I remember sitting in hospital with my son (who had been off school with really bad tummy pains) - the doctor asked him how he was and he says "fine" - really!!!
When I went into hospital with my daughter in December after yet another 3 sleepless night - I told her to make sure she always looked sore/winced when the doctors were there - not when they walked out the room. And I told her not to let the word "fine" come out of her mouth
I sometimes think kids tend to play down how they are feeling to anyone other than mum or dad.
03-17-2013, 05:42 AM   #6
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Those symptoms sound like an obvious flare to me. Has he been on steroids before? Were they effective? I hope you get some solid answers tomorrow. Does he have an ongoing relationship with the same GI? That's just so important IMO.
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-17-2013, 06:33 AM   #7
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I think typing something up to give to the doctor which documents weight loss and symptoms would be useful. Can you print a growth chart and plot his two weights (and heights if you have them)? A picture is worth a thousand words. Also, make sure they weigh him in a gown or underpants (as opposed to shoes and clothes and a coat.) It's likely he's anemic, so getting blood work cbc, crp would also add evidence of Crohn's activity. It's awful that you need to convince your doctors when your son is so obviously ailing. Good luck!

growth chart here http://www.google.com/imgres?imgurl=...9QEwBw&dur=401
03-17-2013, 09:31 AM   #8
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I haven't alot more to add than the others have, but I wanted to say I am thinking of you, and it's such a hard thing to see your child going through something like this xo
Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

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03-17-2013, 10:00 AM   #9
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What was his inflammation? It seems so odd to me that the GI is being so nonchalant. I've only experienced the negativity of a GI ie "The sky is falling" if my son's SED gets over 15. However, in the same office my friend's son has SED of 45 and his doctor is "Oh that's ok". Sooo my point, I guess, is; YOU know him best and what is normal for him, so go with your gut and press your doctor until they listen to you! If they don't get on board with you, then you may have to see someone else in the group.
I also agree with the others in that my son often says, "I feel fine" when sometimes just before visit he was in the bathroom at the GI having horendous cramps. He says it because he doesn't want the DR to do anything to him. (Tests or anything!)
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

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Ileostomy 3/22/14
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Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-17-2013, 10:21 AM   #10
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By the sounds of it he might need a stronger medication to keep things under control. In the meantime... If he is only taking in 1000 calories he defiantly needs more nutrition going in, which can contribute to a flare. Does he drink any kind of nutritional shakes? Peptamin Jr? PediaSure Peptide? Anything will help. If he doesn't eat just say ok just finish your shake and I will get off my soap box. Each on has like 300+ (ish) calories in them. Needs over 3000 calories to gain weight. Meds and doctor in my opinion can only do so much but the nutrition is something that I always felt was my job. I would feel guilty if my DD lost weight and it has happened a few times. I found I needed those shakes during certain times so crucial to help her get over a big hump. Sorry he is not doing well and I really hope you are able to get him to try something to keep his nutrition up to par. Totally stinks to have to be pushing and nagging our kids.
03-17-2013, 10:51 AM   #11
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Thank you all so much for the help and advice. I take on board everything and determined to get the doctor to listen.

This flare has been going on since the end of November, he was on total Modulen for 6 weeks and still lost 6kg.
He has been on steriods before. He was on the same doseage 3 years ago when first diagnoised. Within 3 days then he was a changed child, we called them a wonder drug then, and I was expecting the same to happen this time, but it hasn't.

He is still taking modulen twice a day, and he has also been given Scandishakes to try to build him up. But again he finds these too filling and is reluctant to take them, though I make him take as much as I can.

My son is like others, when asked he always says he is fine! He can just of come out of the toilet for the 5th time at the hospital and still say the same! I also feel the doctors that deal with patients sometimes get a bit complacent because they are dealing with this day in and day out.

I will let youi know how we get on tomorrow xx
03-17-2013, 11:16 AM   #12
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Might he have a stricture? Has he been vomiting? Is anything coming out in the bathroom or does he just have the urge to go?

Keep pushing for answers! He's obviously not "fine", poor thing. I think kids don't always realize how sick they are, especially if its been building up over months. They just get used to feeling yucky and it becomes normal for them.
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-17-2013, 11:33 AM   #13
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It sounds like he needs a stronger maintenance medication then pentasa. Pentasa is really only effective if the crohns is located in certain areas. Maybe discuss changing his medication with them. Here is an article talking about some of the different medications available to treat crohns and their effectiveness:

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.
03-17-2013, 03:37 PM   #14
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I'm thinking he has some sort of obstruction since he is feeling so full so fast and is vomiting. The endoscopies really can only see so much. They miss most of the small bowel - only see the ends - and can't get biopsies. Video endoscopy can show more, but if he has an obstruction, that video endoscopy not a good idea. What did an MRE show? I think you are right to be concerned. Keep knocking on that door. Throw pebbles at the windows! Whatever it takes get their attention that the current plan of action is not working! It will be fine in the end. You are your son's mediator and now is the time to be out there and stirring up the water to get him the attention he needs.
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

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