Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Any advice gratefully recieved


03-18-2013, 05:23 PM   #1
positivemum
Senior Member
 
Join Date: Mar 2013

My Support Groups:
Any advice gratefully recieved

Hi
I have just discovered this forum and it is brilliant. My son was diagnosed 2 years ago and initially did 8 week Fortisip(shakes) diet and Pentasa. This failed to do the job and his scope showed severe damage so he was admitted to have 5 days IV pred, Ciprofloaxcin and metronidazole antibiotics. He continued antibiotics orally once home for 2 weeks and started to taper off pred introducing Azathioprine during this time. came off pred had a scope 3 months later and the blockage he had was gone.

He has been up and down since. He stuggles with ferritin level and has had 8 iron infusions. His blood tests seemed to show 'remission' in November despite the fact he was still getting bleeding. We are due back at the consultant Wednesday and he is still getting bleeding . he doen't really have any pain but is tired. Being 14 we have the whole teenage hormone thing going on too.

What I think I am worrying about is that doc will say another scope and what that will show. Also lots of you seem to be supplementing with all sorts but I haven't had advice to do this. he is fed up eating as nothing appeals and even said he would like to be back on his shakes again so he didn't have to think about food. I just want tp help him. we are very open about it all as a family and school help but his attendance averages 50% and he is about to start exam years now. Do you think Infliximab(Remicade) is the way forward? Do you supplement Vit D B12 even with ok bloods?

Thakns for letting me moan on...
03-18-2013, 05:37 PM   #2
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Welcome Positivemum, my son is 13 (14 in just a few months). Sorry he is still feeling so poor, if he is still having bleeding it may be that there is still active disease happening and the Azathioprine may not be enough any more.

There are quite a few kids/teens on her that are on remicade and it has been the only thing that finally gave them relief.
We are currently doing supplemental shakes with my son and couldn't be happier with them. He also never felt hungry, didn't want to eat and by supplementing with the shakes, he is currently on 6 a day, It doesn't matter how little he eats at meals, I don't have to worry and nag anymore and he has more energy.

We do supplement with a multi-vitamin for teen boys and vitamin D but it did not come from his GI although the GI is fine with it when we told him we were giving them to him.

If he is bleeding that certainly could explain the low iron and fatigue as most likely he is anemic and add in the teenage hormones.

Hope all goes well with the consultant and we just redid scopes and sometimes it is the only way to get a clear picture of what is happening on the inside especially when labs don't match what you can physically see.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-18-2013, 05:44 PM   #3
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Hi Mum! With his iron levels being such a problem, I wonder if there is more bleeding than you know. That could also attribute to his being tired so much as well. My son takes a multi-vitamin plus extra B-complex, Vit D, krill oil and an otc iron supp.. You mention ok bloods, does that include vitamin level tests?

My son was on 6mp/aza for about a year and when that failed, he went to Humira. It really depends on the GI and certainly you as the parent. I wish you well! Good luck!
__________________
Mark, father of EJ

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

No more 6mp
Currently in the Humira Club
03-18-2013, 07:00 PM   #4
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
Hi Positivemum and welcome

There a lots of people here who supplement.
My daughter takes B12 and Calcium + Vitamin D. She also takes Iron due to low Ferritin too.
If David has time, maybe he'll be able to give you some advice re the vitamins. He seems to be very educated about them. Also take a look around the forum and you will find lots of valuable info as well.

Best of luck, and again, welcome
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-18-2013, 08:24 PM   #5
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Welcome, we welcome a PositiveMum here!

I'm sorry your son is not responding as nicely to the meds as you would like. I think you should talk to your doc about supplementing the shakes for nutrition, even if it isn't used for his treatment. Is he losing weight or underweight? My daughter is underweight and they will continue the supplements even after her exclusive period. I like that I don't worry about her vitamins on it, although I do give vitamin D because we live in Alaska and everyone is low here without absorption issues due to the sun. Vitamin D3 can help with mood, inflammation, bone strength, etc. Our kids need it more than the average duck for all these reasons too. I've also read on here that high dose vitamin D can be an alternative treatment. My 13 yo 73 lb daughter takes 5000 units daily (if she remembers!)
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-18-2013, 08:35 PM   #6
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
Hi positivmum

Our doc says at a minimum multivitamin, iron, calc/d combo.

I too wonder about the iron level struggles.....keep us posted!

J.
__________________
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
03-18-2013, 10:22 PM   #7
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Welcome to the community. I'm so sorry to hear about your son's struggles

Suggestions:

1. Even if his blood tests show remission, that doesn't necessarily mean he is. I would request a fecal calprotectin test to check for existing inflammation. It's a pretty darn good test to determine if there is active inflammation or not. In addition, have they tested him for c.diff?

2. The fatigue. The low iron could obviously be causing it but my guess it is a combination of things. When someone with Crohn's disease has fatigue, I want to make sure that their iron levels are good, their vitamin B12 levels are good, their vitamin D levels are good, their magnesium levels are good, and they're well hydrated. It's rare people with Crohn's have all those ducks in a row and when they are, it can make an absolutely enormous difference. Get them all tested and get the actual numbers as, "normal" sometimes is not and we can provide you additional information based upon the numbers you provide us.

3. Have they checked his thiopurine metabolite levels to make sure that the azathioprine is at therapeutic levels? If you're not sure, ask the GI about this.

All my best to you, your son, and entire family.
03-19-2013, 03:06 AM   #8
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
We supplement Sarah's low normal B12 levels, we also supplement iron her levels which are very low.

As her b12 levels improved so did her hemoglobin levels.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-19-2013, 03:32 AM   #9
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Hi and welcome. Sounds like your son is struggling just now. I would think if he still isn't feeling well then it might be worth discussing different meds. My son's iron levels/haemaglobin do stay on the low side so we constantly supplement with a liquid iron. On the weeks I tend to forget to give it to him his bloods do show a drop again. Other than that he just takes a vitamin D supplement (since it's Scotland and we don't see the sun ).
If your son is willing to do the shakes then I would take full advantage of that and ask the doctor if you can supplement with the shakes or even do a few weeks just shakes to get him feeling better.
My son's GI wanted him 2 shakes a day as maintenance but he hated it so much he just couldn't (he had 8 weeks via the NG tube)
Good luck at the appointment.
03-19-2013, 02:08 PM   #10
Jenn
Senior Member
 
Jenn's Avatar
 
Join Date: Jul 2011
Location: San Diego, California
Welcome and sorry to hear about your son. It sounds like his current plan isn't working effectively, so discuss it with his GI. We fought my son's low- protein, iron, B-12, etc for months on end with supplements and it wasn't til his medication really started working that my son finally had an appetite again and normal energy. Best of luck to you.
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
03-19-2013, 07:51 PM   #11
jmckinley
Senior Member
 
jmckinley's Avatar
 
Join Date: May 2012
Location: Alabama
You've gotten some great advice. I just wanted to offer you another hug and say I am sorry that your son is having problems.

I'd check all those vitamin levels as suggested and get on some supplements. If they are normal in spite of how he is feeling then it may be time to do that scope. It's not fun to put them through it, but it is the best way to see what's going on.

Remicade is a great medicine for some. I wouldn't count it out, but I would try the shakes and vitamins to see if they help as long as he isn't getting worse. You want to get any inflammation under control quickly.

Hugs and hoping for some relief quick!
03-20-2013, 02:24 AM   #12
positivemum
Senior Member
 
Join Date: Mar 2013

My Support Groups:
A huge thank you to all of you for your advice. We are getting ready to go into hospital now to see the consultant. He will have bloods done before seeing him and hopefully some of those results will be back in time. I will have to wait for the ferritin which is his usual nightmare one.

It's all so stressful so will be glad when home and know the next step. Funnily enough he has had two days good enough to go into school all both days!

We are in England and the treatments especially supplements seem less than in USA etc. The only thing we have been told to try and supplement is iron. Also multivitamins are hard to find in a form small enough for him to swallow ( not keen on big tablets)

Will update you all later - thanks again
03-20-2013, 03:44 AM   #13
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Hope the appointment goes well. Scotland is the same with supplements - the docs never recommend anything (apart from the liquid iron) and never test for anything - any vitamin checks have been from me asking them.
I noticed in Tesco the other day that there is a chewable multivitamin "for the whole family" - it's in the section for kids chewy vitamins - might be worth a try.
03-20-2013, 05:22 AM   #14
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I asked the gp whether I could supplement b12, he said wouldn't hurt. I told the GI we were supplementing and asked her to retest. The B12 levels had increased, so I asked GI whether we should keep supplementing and she said to keep doing what we were doing.

I now tell the GI and gp that would like to supplement something but prefer to know the level first. This seems to get the blood test ordered.
03-20-2013, 09:25 AM   #15
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Please be careful with the multivitamins as they can lull you into a false sense of security. I have seen too many people say something along the lines of, "I take a multivitamin so I don't need my vitamins or mineral levels tested as they must be fine". Unfortunately, this is far from the truth. In the case of vitamins and minerals such as vitamin B12, vitamin D, and magnesium, if you're deficient due to Crohn's disease (common) then the amount in a multivitamin is nowhere near what you're going to need dosage wise and you will remain deficient.
03-20-2013, 12:43 PM   #16
positivemum
Senior Member
 
Join Date: Mar 2013

My Support Groups:
Well it went better than expected! Blood test went without a hitch eventhough not got the results back yet. Saw consultant who said all lab results great from Feb so happy to go with them. Had a good chat and he checked B12 folate and Vit d results. The only one that was low was Vit D and he said this would contribute to tiredness along with iron issues. Said to take the Spatone water for iron that we said we had found and he prescribed a high dose Vit D Which son takes all 8 capsules in one go and thats it. Will check levels again in several weeks. Said to try having Vit D foods eg milk. If levels don't increase then will give this Vit D again.

Also said to add in 1-2 Fortisip shakes to supplement. His weight and height all perfect for age. The bleeding appears to be due to the fact son has most inflammation near bottom ie the lower end so it gets irritated when toileting etc so back to 2 weeks suppositories which he said would control that.

So I do feel there is hope again...

No need to re-scope at the moment so that is good news and if Vit D and iron help with suppositories we should get on track. Doc very supportive in wanting son in school more especially as starting GCSE years in Sept.
03-20-2013, 12:51 PM   #17
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Glad appointment went well and you have a plan. I've noticed a difference in level of fatigue but whether it is from the Vitamin D or the supplemental shakes, I don't know but he definitely has more energy.
03-20-2013, 01:59 PM   #18
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
What was the specific vitamin B12 level?
03-20-2013, 03:13 PM   #19
positivemum
Senior Member
 
Join Date: Mar 2013

My Support Groups:
I will find out in the next couple of days. what would you say was ok?
03-21-2013, 02:34 AM   #20
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
400pg/ml or higher. I can provide references as to why once you get the results.
03-21-2013, 03:21 AM   #21
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
That sounds like a good appointment. What vitamin D supplement did they give you? All the advice we got from the dietician was - some cereals have vitamin D, Asda do a new kids vitamin D supplement on it's own and sunlight - mmm, don't really see much of that!!
03-21-2013, 01:30 PM   #22
positivemum
Senior Member
 
Join Date: Mar 2013

My Support Groups:
sascot

We got given a one off high dose of 8 capsules to be taken in one sitting called colecalciferol 20000 unit capsules. he has to take all then bloods in several weeks to see if a difference and if not another dose. Also told to drink milk
03-21-2013, 04:25 PM   #23
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
You have gotten a lot of good advice.

I would only add that if he has no appetite (especially as a teenage boy) then his disease is probably active. At 14 he will still grow so you want to get things under control sooner rather than later. Once the growth plates close, he is done growing. My son stopped growing not because his crohn's was so severe but because he had no appetite and was very underweight. A BMI % under 20% will stop growth.

I give both my kids vitamins! Multi and Vitamin D3 1000mg. My son's GI is great about checking levels.
__________________
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
Prayer
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Any advice gratefully recieved
Thread Tools


All times are GMT -5. The time now is 12:58 AM.
Copyright 2006-2017 Crohnsforum.com