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Crohn's Disease Forum » Parents of Kids with IBD » I just want my daughter back...


04-28-2012, 11:02 AM   #1
sarah02
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I just want my daughter back...

Hello,
I have never joined a forum before, but I really just need some support. My daughter is 12, and for the past two years has been very ill. She has severe stomach pain, unable to eat for 5-7 days at a time, chronic constipation even with 2 capfuls of Miralax a day, very low vitamin D, low grade fevers, sleeps 14-16 hours a day, is very pale, has several canker sores in her mouth...she is in the 3% of her weight category, once was in the 75%.

So far, she has done fecal fat test..negative. Bloodwork shows nothing abnormal other then vitamin D. We just did an MR enterography yesterday she was unable to drink the contrast, she kept trying but was throwing up. Then tech proceed with the test and when they injected her with the contrast she got very sick and was vomiting all over the table..it was so stressful. We are scheduled for her 2nd scope next Friday as one done almost a year ago was normal. She was hospitalized for malnutrition and dehydration about a month ago for 4 days.

I am exhausted, I am at a lose. I don't know what to do to help my girl. I have had to pull her out of school because she didn't have the energy to keep up. Her stomach pain is very strong typically an 8 out of 10 after she eats. So now..its a fight to get her to eat anything. Even water hurts her stomach sometimes.

We are working with a Peds GI at Hopkins, but I just don't think she gets it. I just want my girl back. She went from being a happy, energetic, excited, funny, wild girl to one I have to drag out of bed, force to drink and eat. I know as her Mom something is not right...at all.

She has been on peractin, levisin, and previcid, zantac, zoloft, 50000 IU weekly of Vitamin D, bentyl.

If anyone has any thoughts...it would mean the world to me as I am just so worried about her.
Sarah
04-28-2012, 11:57 AM   #2
LittleChloe
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I'm so sorry Sarah. I know how hard it is to have child sick. You have come to the right place for support. The time before you have a solid diagnosis can be real torture because obvioulsy if you don't know what you have it's hard to know what direction to take for treatment. It sounds like that's where you are right now. Hopefully the scope you have coming up will give you some answers. I've learned on here that regular bloodwork isn't always reliable for diagnosis. Perhaps they will order an IBD 7 serology blood test for you. It takes a couple weeks to get back but according to my research can be a good diagnostic tool. Also are they doing anything for the low vitamin d? There has been some fantastic information on this forum lately dealing with low vitamin d and it's role with genetic mutations- fascinating stuff. Things will get better, you'll get your little girl back. Everyone is here for you, keep us posted. Julie
04-28-2012, 12:32 PM   #3
lotte26
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Hey there sarah,
Im so sorry you have to go through this! Having a sick child must be the worst thing ever. I would even say it might be worse than actually having the pain. Children shouldn't have to deal with this, and neither should you. I know it must be hard but the best thing you can do is just be her rock and let her know you are there for her. It makes all the difference in the world to have a mother to love and support you and to cry on when you are this sick, and it will do you good to cry with her too. I remember when I was 13 and didn't have a diagnosis. It was horrible, lots of people make you think it's In your head because it's so hard to diagnose.. Don't worry though, as long as you persist you will get a diagnosis, it may be really hard for her to do all the tests, but when you get a diagnosis, hopefully they will get her on some decent medication so she and you can have a better quality of life.
Also, try and make sure you have some time to yourself each day to do something you like doing, as you don't want to feel like a slave to the illness.
I really feel for you guys and hope things look up for you soon.
Hope this helps!
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-Charlotte


Crohn's disease since 2002, with multiple fistulae

25 May '11 : colostomy formed, 70cm bowel removed + 50cm ileum removed.

16 October 2015 - open parastomal hernia surgery to be performed

Past Failed Meds: Pentasa, azathioprine, methotrexate, Humira.

Current Meds: Humira, azathioprine, fluoxetine, Brevinor, Fish oil, melatonin
04-28-2012, 01:24 PM   #4
Twiggy930
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Hey Sarah,

Welcome to the forum!!! I am so sorry to hear about how ill your daughter has been. My son is 10 and was diagnosed with Crohn's in early February after being ill for quite some time. This is a terrible thing for anyone to have to go through.

My son's bloodwork was only very slightly out of the normal range (in terms of CRP, hemoglobin, albumin, etc.) at diagnosis despite terrible symptoms and it is now completely normal and he still has loads of symptoms. Just trying to say that bloodwork does not always reflect level of disease activity. Has your daughter had a fecal calprotectin test done? Apparently this test, just a stool sample, is more accurate at detecting inflammation in the intestine than the regular blood tests. I have even heard that it can be as good as a scope at detecting inflammation. We are only being offered this test now, after many months of blood tests not matching symptoms, so I don't think it is always a commonly offered test.

Another thing to look into is enteral nutrition. In this treatment patients get fed a nutritional formula exclusively for a number of weeks. This formula can be consumed by drinking it or through a NG tube. My son has been on this treatment for the last 5 weeks and it has definitely helped with his weight. There is a EN section in the treatments forum.

I really hope you can get some answers for your daughter. It is a very hard thing to watch your healthy child become sick and have no clear path to get them better. Keep digging though there is a path out there somewhere that will work.

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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-28-2012, 01:49 PM   #5
Devynnsmom
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Hi Sarah, I know how hard it is having a child who is ill but not knowing what is wrong. My daughter is 10, and was diagnosed at 8 years old (Dec 2009) with Crohn's. After another scope this past Feb, they have diagnosed her with Ulcerative Colitis as well. She was sick from the time she was about 18 mos old with diareah, constipation, mouth ulcers, joint pain, stomache pain, body rashes, headaches, fevers etc. It was awful KNOWING something was wrong, but having the dr excuse it as a virus, flu, normal childhood pains etc. My daughter has always been very slim, but average height. She eats more than my older kids but just doesn't put on weight AND she eats very healthy. We stareted on Pentaza in Dec 2009, which seemed to work great up until last June (my Mom was diagnosed with cancer and passed four weeks later) when stress made her flare. She really hasn't been well since. In January she lost all the skin on the bottom of both feet
You have DEF come to the right place for support and just to vent. I hope you get to the bottom of your daughters problems. Its so hard watching our babies hurt and not being able to do anything. (((hugs)))) to both of you.
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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
04-28-2012, 01:50 PM   #6
izzi'smom
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I am so sorry to hear of your struggles with your daughter...I know how it feels. Glad that you found your way here, hoping you get some meaningful results that help lead you in the proper treatment direction. (((HUGS)))
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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.
04-28-2012, 02:59 PM   #7
Josephine
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I hope find answers soon and your daughter start to recover.

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Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

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04-28-2012, 03:10 PM   #8
Lilmamma
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Sarah
This has to be one of the most difficult times I've had in my life. The not knowing, the sickness... it really drains you physically and emotionally.
I, too, am in the boat of all the blood work coming back normal. We only found the diagnosis after an endoscopy and colonoscopy with biopsies.

Hang in there and know that we are here for you
04-28-2012, 05:16 PM   #9
Sascot
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So sorry to hear about your daughter. I hope they manage to get a diagnosis asap and get her on some treatment that works! It took ages for my son to be diagnosed and it was so frustrating not knowing what was wrong, plus I think they just thought I was a paranoid mother.
This is a fantastic forum for info and support. I don't have much info to give as we are just starting our medication journey this week. Good luck.
04-28-2012, 09:55 PM   #10
DustyKat
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Hi sarah and

First up......this is such a difficult and heartbreaking time and as you have seen many of us here had trodden that same path...

My own daughter went undiagnosed for 18 months and had many of the physical symptoms your daughter has...tendency to constipation, vomiting, upper abdominal pain, weight loss. It is difficult not to relate the constipation to small bowel disease, well in minds eye anyway. As others have also said, blood tests do not always equal severity of disease. My daughters bloods consistently returned normal results, as did imaging, right up until the night before emergency surgery. I will no longer trust blood results with her unless they match what I am seeing in front me.

Aside from Vit D have they tested for any other vitamin and mineral deficiencies like B12, Folate and Iron Stores?

Does the GI do thorough palpating of her abdomen? Is there any hint of a mass in her right lower quadrant?

Canker sores may be a result of vitamin deficiency but also can be an Extra Intestinal Manifestation (EIM) of IBD. Does she have any symptoms like headache, rashes, joint aches or eye problems?
Have a look at the this forum and see if anything rings a bell.

Twiggy has pointed you in the right direction when it comes to Enteral Nutrition.

I hope the scope is able to provide you with solid answers hun. A normal scope 12 months ago may just mean that the intestinal changes had not occurred as yet. Is not uncommon for EIM's to develop some time before intestinal ones do. I hope you are able to get some sort of result from the MRE but if not perhaps it would be worth repeating after the scope. They are generally very good at identifying inflammation and some abnormalities in the areas of the bowel that the scope can't reach. If it is repeated perhaps they could give her the oral contrast via a NG (naso gastric) tube???
If a repeat isn't on the cards then a targeted ultrasound may at least show if there is any thickening of the bowel, particularly the Terminal Ileum.

Good luck and keep us posted with how things are progressing.

Mum!

Dusty. xxx
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04-29-2012, 11:12 AM   #11
imaboveitall
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Hi Sarah,
Your original post could have been ME writing about Violet right before dx in 2008.
Scopes normal, bloods normal or close to it.
V has ileal disease which scopes cannot show. She required a capsule endoscopy to reveal it. That is what I'd ask for in your case.
She sounds classic for ileal Crohn's.

Think about and investigate enteral nutrition as treatment. It was Violet's first and only treatment for the first three years. NO adverse effects and only benefit. Common first line tx in UK, Japan, Canada. Less common in US due to patient noncompliance. V's been on it for close to four years.

HUGS and love from one who has been there and still is near there...worry never leaves.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-29-2012, 09:43 PM   #12
sarah02
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Wow....thank you all so much for taking the time to reply. I sat here reading the replies with tears streaming down my face. I have tried for so long to just be strong and to keep fighting, and I don't need to tell you all that it is SO hard. When I finally get my daughter in bed some nights all I can do is cry. I just want her better...I would love a day of not hearing her say my tummy hurts... I would love for a doctor to believe what I am saying. I am tired of hearing this is migraines, or anxiety. I know my kiddo better then that...

I am hoping tomorrow I get the results from the MRI...she is scheduled for a scope on Friday...

Truly, thank you so very much.
04-30-2012, 07:19 AM   #13
dannysmom
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Hi Sarah,
I understand how you feel too. My son Danny, is 15 now, and has been sick for about 3.5 years without a diagnosis. Most tests come back either normal, or normal enough so it does not lead to a diagnosis that sticks. Danny is not able to go to school either due to fatigue. He is been getting home instruction from the school district. I agree with Julie's suggestions of trying to get a pillcam and maybe try liquid nutrion. We've been to Johns Hopkins (head ped GI) with Danny too (for a consult when we were testing for Cystic Fibrosis). For us, they seemed to put a lot more emphasis on getting Danny functional rather than diagnosed & made to feel better. We also see a Dr. B. at Mount Sinai in NY that did a repeated colonoscopy & some neuroendocrine tumor testing (still waiting for the results.) Our main GI (Dr. K) is from NYP (Morgan Stanley's Children hospital) and is the kindest doctor we see. He believes Danny and has enormous sympathy for us ... although currently he is out of ideas ... but said he has seen this sort of thing before and it has gone away by around the age of 18. In the mean time, he advises us to help encourage Danny to keep up with his home instruction and try to do something fun with Danny everyday. (We've become quite the movie buffs!)

Ask them to stain for mast cells at her scope on Friday. (It is not done by default but useful for mastocytosis enterocolitis.) Good luck! I hope you get some answers leading to relief. Please keep us posted. This forum is a great place for support ... even if undiagnosed!!
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Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
05-01-2012, 03:31 PM   #14
Suzysu
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Sarah - I am keeping my fingers crossed for you and your daughter - I know what you mean about trying hard to keep fighting and stay strong. My little one has been ill for a year and a half now and it has taken me all this time to get Dr's to take us seriously - He is only just having the first of his tests this week and I already feel like I have no reserves left and am on the verge of tears all the time. - good luck and big hugs xx
05-03-2012, 05:53 PM   #15
Farmwife
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Hi, I just read your story. I also have a child (Grace-3yrs.) that's showing signs. I love it when the docs question us as if we might be confused. We however we are the ones hanging onto our children in the middle of the night: screaming because of their abdominal pains. NO, WE know are kids and WE know them better. That's why we keep fighting for them!
I hope you find out soon. Welcome from one new member to another.

Farmwife

Last edited by Farmwife; 05-03-2012 at 06:59 PM.
05-03-2012, 06:00 PM   #16
Farmwife
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I just say in another thread you got you results back. My first comment doesn't change a bit. Hang in there!!!!!
Farmwife
05-03-2012, 06:20 PM   #17
Mehita
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I'm sorry to hear you're going through this. You're not alone though!!

First, if you don't think your doctor "gets it", get a second opinion. Our first ped gastro doc wouldn't take me seriously (wouldn't even do a blood draw!) so we went to a different clinic. The new doctor did an MRI and it turns out my son was flaring with a 6 inch stricture. You're the only advocate your daughter has so keep pushing, asking questions, and fighting for her until you're satisfied she's getting the care she needs.

Did you get the results back yet? My son also threw up with the MRI Enterography... he couldn't drink the three full glasses of contrast because of the stricture. It simply had no place to go but up. I read your story and it's so similar to ours...

With the malnutrition and canker sores... have you considered Celiac disease?

Please keep us posted.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
05-03-2012, 08:40 PM   #18
Mountaingem
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Sending hugs to you and your daughter! Stay strong and remember we're here for you!
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Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
05-03-2012, 10:59 PM   #19
LittlebitsMommy
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Dont have any advice but wanted to say Welcome to the board. You and your daughtre are in my thoughts
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