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Crohn's Disease Forum » Parents of Kids with IBD » Son not getting better, Mom needs some support and advice


03-21-2013, 07:57 PM   #1
Gingermom
 
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Son not getting better, Mom needs some support and advice

Hi all,

My son is 12 and has EGID and CD. He started 6-MP last week. The problem is the EGID causes a lot of nausea and I can't seem to get him on a diet that doesn't make him sick. I'm so frustrated! I just want him to feel better. He is gluten free, dairy free, egg free, no pork, turkey, rice, all kinds of stuff. He seems to tolerate chicken, quinoa, some gluten free flours so i made him a waffle today. he can have applesauce and bananas. Hes all low residue right now. But these foods just keep him feeling ok, 3-4 level stomach nausea. I gave him some chicken apple sausage that was all organic and natural, not processed, and he had bad d today. Nothing makes him feel good. Is it really too much to expect that he will ever feel good again? I just want to cry and scream.
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Gingermom
13 y/o son
Dx 10/12 EGID 12/12 CD 7/13 Arthritis
2 rounds prednisone
Curr meds: 75mg 6-MP, Colozal 750mg 3x day, Amitryptiline 25mg
Supplements: Lysine, probiotics, folic acid, supplements from NRT doc
Didn't work: Pentasa, Sulfasalazine
03-21-2013, 08:18 PM   #2
my little penguin
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Has he ever been EEN ?

To treat his egid?
http://apfed.org/drupal/drupal/sites...mary_final.pdf

http://ainotes.wikispaces.com/file/v...+JACI+2011.pdf


Typically if he hasn't cleared he would need to be elemental only
Then add one food at a time for a three week trial as a single ingredient .

Please look at KFA
For the egid side they can help you

Www.kidswithfoodallergies.org

What drugs is he on for ibd?

And how long?
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DS - -Crohn's -Stelara
03-21-2013, 08:22 PM   #3
my little penguin
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Organic and minimally processed doesn't help if its cross contaminated with
A egid trigger.

6-mp can take 4-6 months to work so that could be causing the stuff as well
If it were my kiddo - I would ask to go EEN for two -three months in addition to the 6-mp.
In fact we did that for ds to try and get remission since it was unclear at the time if there was other food stuff going on.
03-21-2013, 09:13 PM   #4
Ams-Qld
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I just wanted to let you know that I really feel for you Gingermom!! I know what it's like, though not with the food struggles. Our son is 13 and has had complicated perianal abscesses/fistulas for about 9 months now. He has been in quite a lot of pain in that time and it is so hard to watch in your child.
6-MP does take quite a while to work, so hopefully things will get much better as the meds start to kick in. Hang in there, you are not alone!!
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Son with Crohn's, Dx at age 10 - 4 years ago. Anaemia of chronic disease (first iron infusion Dec 2013) Peri-anal abscesses (Aug 2012) that formed fistulae (early 2013). Began 8 weeks of EEN in Dec 2013 via ng tube.
Current Meds: Imuran (25mg) morning and night. Previous Meds: Pred, Flagyl, Cipro. Allopurinol.
Please take my thoughts and experiences as mine alone; I am not a medical professional and my humble opinions are not to be taken as advice! Blessings to you and yours!
03-21-2013, 10:55 PM   #5
Gingermom
 
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MLP - he has not done EEN yet but I'm thinking that may have to be next. I think I've been hoping that would never be an option. We've removed all tested allergans plus any we notice bother him. Sometimes he is fine with a certain food, then 2 weeks later he's not. It's so aggravating. He is also on Pentasa 1500mg twice a day (almost 2 mo), Prilosec 20 mg twice a day, plus all the other supplements he takes. We already did a round of prednisone. He has only been on the 6-MP for 1 week and I know it takes a long time to see results. Is there something else he could try that would work faster? He's not supposed to see the doc for another few weeks but I'm not sure we should wait that long. Is it dangerous for him to be like this for this long? I don't really know if I should call it "in flare" since I'm all new to this. I'm pretty sure the nausea is the EGID but the d and stomach cramps are the CD. I have been on so many forums (apfed, kfa).
03-21-2013, 11:11 PM   #6
Crohn's Mom
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Gingermom, I'm sorry I know nothing about EGID
However, I can relate to your frustrations with the unknown !

I just want you to know that we are here for you and you have some emotional support as well
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-22-2013, 05:51 AM   #7
Dexky
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With so much food intolerance, it sounds like pushing for EEN may be your best option. In the meantime, have you tried nutritional shakes like Boost, Ensure etc.. They are gluten and lactose free at least. Unfortunately, they get most of their calories from sugar but they have really helped us with weight gain and growth. Good luck!
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Mark, father of EJ

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

No more 6mp
Currently in the Humira Club
03-22-2013, 06:03 AM   #8
Farmwife
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Hi, feel your pain.

EEN is the way to go. Grace has had rough patches but at least I know she gets all the nutrition she needs. Did you ever take him off the top 8? Has he been re-scoped lastly to measure the eos in his track?


HUGS
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-22-2013, 08:06 AM   #9
Tesscorm
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I don't have any experience with EGID, I can only imagine your worry and frustration!

If he can tolerate the EEN formulas, I'd also suggest EEN. It will provide him with necessary nutrition and may help reduce inflammation.

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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-22-2013, 08:26 AM   #10
rollinstone
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Hi, hope he feels better soon, the 6mp could also be the culprit for the nausea, im on its sister drug (imuran) and when I increased my dosage I had nausea for about 8 days straight, as my body has gotten used to it the nausea has gone away, hopefully this is the case for your son and he'll feel better soon. All the best
03-22-2013, 10:47 AM   #11
Jmrogers4
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Sorry he is still feeling poorly, I think EEN may be the way to go as well. Sending lots of support you way.
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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
03-22-2013, 12:37 PM   #12
QueenGothel
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I would follow the advice below. No experience with EGID beyond what I follow here on friends posts. At least if you do the EEN it can give you a much need break from all the guess work as to what is triggering the reaction. I hope the 6mp starts kicking in sooner than normal for him. Best wishes for you and yours.

Last edited by QueenGothel; 03-23-2013 at 09:04 AM.
03-22-2013, 04:31 PM   #13
jmckinley
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So sorry he is feeling so bad. I don't have any experience with EGID, but my son has CD. EN does help alot when they just can't tolerate foods. It may be a spice in the sausage. You never know what will set it off sometimes
03-22-2013, 04:49 PM   #14
Sascot
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Hi, sorry to hear your son isn't feeling well. Nothing more frustrating than watching them suffer!
I know exclusive EN can seem daunting, but when it helps the pain and you know they are getting the nutrition, then it is all worth it. My son did the 8 weeks exclusive Modulen through the NG tube and it really helped him. He only had a couple days when he struggled not eating, but other than that it was fine. If your son can't eat much anyway it might be great for him and you not to worry about what to try next.
03-23-2013, 12:21 PM   #15
CarolinAlaska
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You've gotten lots of great advice. I am just here to say we know how you feel. It is so frustrating. It will get better. Soon my dd will be doing the 6 mp, if I can get her healthy for long enough to do it! Some days I just want to put her in a plastic bubble!
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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.
03-23-2013, 03:43 PM   #16
Marni's mom
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Gingermom, as you can see, there's a lot of support here for the EEN route. I'm kind of surprised your doctor hasn't already suggested it. Complete bowel rest, if your son will go along with it (mine won't) might be a way to get him back to baseline. Then, as mentioned above, you can feed him one thing at a time so you can see if it's inflammation or intollerance to certain foods that is triggering his symptoms.
Good luck!
03-25-2013, 12:33 AM   #17
vtfamily
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I know we live in a time where it has become prudent, even necessary, to limit and eliminate elements from the diet. I also know a lot of kids have been helped by making dietary changes.

Just thought I'd share my own observations from my son. He was always a great eater...until things changed when he was about 4yrs old. One day a food was his favorite, the next he wouldn't touch it. In hindsight, I now know that it was the Crohn's and the inflammation/strictures that were bothering him. Even now, 9 years later I see the same behavior. His personal "will eat" food list is quite small, but even with that there are times when he just won't eat much of anything. I can only attribute it to a flare. He does return to the same foods fine as the days pass.

We've tried all of the shakes. He'll drink each for a couple of days, then he looses his taste for them. Our most successful one has been the Breakfast Essentials powder. He can mix as much or little as he likes with the milk. When he isn't eating much of anything, at least I know he is getting nutrients and calories with that.

Gus has also been on elemental nutrition for a while now. He takes it through a G-J tube in his stomach. It has made a difference. He has had steady weight gain with it...which means more of that nutrition is getting through than anything else. He loves it because it takes pressure off of eating and he can use it for test prep (bowel cleanse, MRI contrast, etc...) and for liquid medications too. We run the feeds overnight, so he is "free" during the day. No one at school even knows he has the port in his belly, unless he shows it to them.

We also have experience with TPN. Give a shout out if you go that route at some time.

Hoping for the best for you both.
03-25-2013, 07:15 AM   #18
QueenGothel
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We have use TPN as well. It has proven to be very useful when my kiddo is NPO at the H. We must have a PICC though PPN is so rough on the veins!
03-25-2013, 08:02 PM   #19
vtfamily
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We have use TPN as well. It has proven to be very useful when my kiddo is NPO at the H. We must have a PICC though PPN is so rough on the veins!
I agree, PICC line is the way to go for TPN. At one point my son needed TPN while in the hospital on gut rest. The on call doctor talked my husband into allow vein placement, instead of the PICC line. After a couple of days it started to hurt. Then they had to move it to the other side. All-in-all, the PICC line is much better.
03-27-2013, 01:31 AM   #20
Marni's mom
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vtfamily, it sounds as if my daughter and your son have lived parallel lives. Our experience has been almost identical to yours. Getting sick at 4 years of age, the eating changes, TPN (ours was central line, not PICC), Mickey button with pump at night (right now round the clock, though), etc. Marni's repetoir of foods has shrunk to only a few items these days, although she is currently taking prednisone on top of all the other meds (Humira, Methotrexate, Balsalazine, folic acid, cipro, flagyl, hydrocodone and just added...a sleep aid) so her apetite has exploded in the past few days to that of a healthy 17 year old athlete! LOL

We're leaving the hospital in the morning! YEY!
03-27-2013, 01:57 AM   #21
CarolinAlaska
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Yey for Marni!
03-27-2013, 02:14 AM   #22
vtfamily
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Ginger, How is your son feeling these days?

Marni's mom, So happy to hear Marni is leaving the hospital. It will be so nice (for both of you) to sleep in your own bed!

Cheryl
03-27-2013, 07:54 AM   #23
David
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Hi Gingermom.

I have an idea for you to try under the supervision of your physician.

I've been delving ever deeper into what happens with magnesium deficiency as, in my opinion, it is incredibly common in people with Crohn's disease and I actually believe it plays a part in the pathogenesis of some forms of Crohn's disease. During my research, I have found that magnesium deficiency causes eosinophils to increase and, well, go haywire. Considering that magnesium plays a part in over 300 metabolic reactions in the body, this isn't too surprising. I also believe that magnesium deficiency manifests differently in different genetic makeups and via countless other variables. By the way, nausea can be a symptom of magnesium deficiency and so can inflammation.

My suggestion would be to try supplementing magnesium under the care of your doctor. Here are a few studies/papers that showcase the effect of magnesium deficiency on eosinophils.

http://onlinelibrary.wiley.com/doi/1...70910/abstract
http://www.ncbi.nlm.nih.gov/pubmed/749826
http://bloodjournal.hematologylibrar.../1642.full.pdf

I would suggest printing this paper out, highlighting the following, and taking it to your doctor:
Magnesium deficiency is common in Crohn's disease, especially in patients who have had an intestinal resection. The best treatment consists of oral supplements with magnesium heptogluconate (Magnesium-Rougier) or magnesium pyroglutamate (Mag 2). The other salts of magnesium will cause more diarrhea. The total dose of elemental magnesium required to ensure normal serum magnesium varies between 5 and 20 mmol/day. To avoid causing diarrhea with magnesium supplements, I recommend that the total dose be mixed in the ORS and sipped throughout the day, ice cold and flavoured with non–sugar-containing agents.
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