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Crohn's Disease Forum » Parents of Kids with IBD » 9 yr old just diagnosed. Need help!


01-12-2013, 11:42 PM   #1
Momof3girls
 
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9 yr old just diagnosed. Need help!

Hi all, my 9 year old daughter was diagnosed with Crohn's on November 27. She has just recently discontinued 8 weeks of prednisone. She has been on 6MP for about 7 weeks. Since stopping the prednisone her diarrhea has returned. My husband and I have done research on the SCD because we would love nothing more than for her not to be on medication for the rest of her life. This leads to my questions. Has anyone here had success with this? Is the intro diet necessary? From what I've read it will be challenging but we will do anything to help her. Also, this is my first post on any kind of forum or blog so please bear with me as I learn the ropes.
01-13-2013, 12:04 AM   #2
my little penguin
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Welcome!!!!
Have you let your Gi know her diarrhea is returning???
They may put her back on pred until the 6-mp can reach therapeutic levels - takes a out 3-6 months.
Scd can be done in conjunction with meds but most docs do not recommend removing meds - please ask yours for advice.
Generally speaking if you are dx with crohn's as a young child then your disease course will be severe so then intent if the scary meds are to keep your child's guts as healthy as possible for as long as possible until they come up with a cure or less scary meds.
Not taking meds increases your risk of damage sometimes silent
Dusty can attest to this.
Once the damage has been done the docs can only remove the damage bowel and the diseaes is harder to control.
You really need to have an honest talk with your child's Gi about your concerns about the meds and let the doc know what you would like to try .
Also ask given your child's history what would the doc expect to happen if you stopped the meds and tried scd alone.

The problem right now is no one can tell which meds will work best for which kids so it is trial and error .
I know you are scared but remember the goal a healthy gut until there is a cure at the same time giving our children a good quality of life.
Hugs
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01-13-2013, 12:06 AM   #3
my little penguin
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Oh you could try adding EEN instead of more pred.
I describe EEN to another new mom here
http://www.crohnsforum.com/showthrea...765#post571765

It works great but not long term
01-13-2013, 12:18 AM   #4
Momof3girls
 
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Wow! Thank you! We have not told the GI yet about the diarrhea because we know that she will put her back on prednisone. Her pediatrician is all for us trying the diet in conjunction with the 6MP for the time being. At least until she goes back for her follow up EGD/colonoscopy in about a year. She had an MRI on dec 11 which showed no additional signs of the crohns and the inflammation she had seen during the colonoscopy was cleared up. So I'm puzzled as to why the diarrhea has returned, if the MRI was clear. Obviously I have a lot more research to do on this disease and I'm glad I found this forum. Thank you for your reply.
01-13-2013, 12:21 AM   #5
kiny
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I think you take huge risks by dropping medication in favor of diets. There's no proof that SCD helps in any way, inflammation in crohn's disease is transmural, it's deep inflammation, unlike UC. Even for EN, I use it but there's very few studies that show benefit, must studies that do not show benefit never got published since it tends to hamper funding.
01-13-2013, 01:27 AM   #6
DustyKat
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Hi Mum and

I am so very sorry to hear about your daughter, bless her.

Mlp has given you wonderful advice about meds and diet. It would be hard not to imagine that the return of the diarrhoea is a result of the cessation of Prednisone so please do look into EEN as an alternative to steroids and as a way of assisting the maintenance meds to gain remission.
I personally don't believe that diet causes Crohn's nor is it capable of 'curing' it. I do believe however that it does play a role in symptom control and the maintaining of remission but it is only one piece of the puzzle.

I think it would be best if you maintain an open dialogue with the GI and discuss what your options may be. We certainly understand your desire for your child to be drug free but right now the main focus needs to be to get her into remission and keep her there. Untreated or under treated disease has side effects that have the potential to be equal to the most rare and scary of any meds out there. I have been there unfortunately. I am in no way suggesting that you would fund yourself in that situation, I just want to stress to you that disease left to simmer away can have serious consequences.

Please read, read and read some more and never stop questioning. Knowledge is power and arms you with the confidence and information needed to be the best darn advocate you can possibly be for your daughter. And always remember, there is no such thing as a dumb question.

Good luck and welcome aboard!

Dusty. xxx
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01-13-2013, 08:12 AM   #7
Dexky
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Welcome Mom,

It gets knocked quite a bit but my son was put on Asacol concurrently with 6mp immediately following his dx. Even before he commenced pred, the asacol had made a huge difference in the frequency of his bm's. He stopped bleeding with it as well. It kept him in good shape while we waited for 6mp to reach therapeutic levels.

Every med is scary to me, but nothing like as scary as bloody, urgent, and frequent d and/or a child in pain.
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01-13-2013, 08:35 AM   #8
AZMOM
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Hi Momof3 - many have said it well below. . We did well on 6mp for a long time BUT getting it to a therapeutic level takes time. For us the initial period of time on steroids was about 16wks. I know 8 weeks probably felt like a lifetime but in the bug scheme of things, it is very short. Your daughter may just need a little longer for 6mp to get to a therapeutic level.

Just my two cents, talk to the GI. He/she is your long term partner in this one. Id tell about the diarrhea and ask for the Prometheus labs to check her 6mp levels. Share your prednisone concerns etc. As daunting as it seems right now, this is your team and everyone needs the playbook.

Big hug - so glad you posted. Let us know what we can do to support you!!

Julie
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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
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
01-13-2013, 08:41 AM   #9
mvond5
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Hello mum,
I want you to know. SCD worked for my 14 year old son that is extremely active in travel ice hockey and LAX. Matthew has been on the diet since march 2012. His blood work has almost returned to all normal ranges. This was only after doing the diet for 4 months.
Yes, its extremely hard, but we would not change our decision.
My email is [email protected]
If anybody would like any more information.
My son also lost so much weight, he was 115 and now is up to 143. He looks fantastic!
I strongly encourage you to do the diet.
01-13-2013, 10:26 AM   #10
Charleigh
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SCD is working wonderfully for us. DS shocked the GI with his improvement in bowel symptoms. He is doing better than most on meds (2 or less BMs most days and either solid or mostly solid). I am too new at this to say it is the definite answer but it is working for us. DS dropped down to 72 pounds and in the last 3 weeks he has been gaining and is up to 80. We just had some recheck on labs and we will recheck again in 2 months.

The diet is difficult and it is a huge commitment, but it does get easier. There are so many great recipes available.
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01-13-2013, 10:47 AM   #11
Devynnsmom
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Hello Mom and welcome to the forum. I have no experience with the diet you mentioned. I would DEF let your GI know the diarrheah has returned. I understand you not wanting to go back on pred. But your GI really needs to know. Getting her into remission is the most important thing right now. She won't stay on the pred forever.
My daughter is 11 and was diagnosed at 8 years old. She was on one med that worked for about 18 mos. Then we had a death in the family which threw her into a major flare. She was in so much pain and having diarrheah numerous times a day. We tried one med last March that did nothing. Still pain, fevers, headaches, huge mouth ulcers, joint pain and the awful diarrheah. We tried a 5 week milk free diet, with VERY minimal change. Then in Nov they changed her meds again and *knock on wood* she started to feel better.
I hope your daughter starts to feel better real soon. ((((((hugs)))))
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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
01-13-2013, 01:29 PM   #12
jmckinley
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Welcome Momof3girls. I am sorry that you have had to find this forum, but it is a great place for support and information. You've gotten some great advice.

I second
* 8 weeks is not enough for prednisone to work. 13-16 weeks has always been our round when in a bad flare. Nothing less worked.
* Get the 6mp levels checked. It takes a while to start working and has to be at the right levels.
* Tell the GI about the diarrhea.

I know the SCD works for some, so it's worth a shot. But I would do it in conjunction with the meds. Once she is remission, you can work with your GI to try to taper the meds off. Don't do the diet to try to get it under control. You want to stop any damage from occurring ASAP! We did the SCD for 10 weeks last spring. My son was in a full flare and we could not get it under control. The diet made him "feel" better, but Crohn's was brewing under it all. He ended up in the hospital and on more meds. We are doing a modified SCD now and he is feeling great.

Making decisions is so difficult! Sending you lots of hugs and hopes for healing and comfort in your choices!
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