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Crohn's Disease Forum » Parents of Kids with IBD » My daughter just diagnosed and we are scared


 
12-30-2012, 02:01 PM   #1
Grace's Mommy
 
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My daughter just diagnosed and we are scared

My daughter Grace is 10 and was diagnosed with Crohn's Disease on 12/27/2012. We are in shock that this has happened to her. Our healthy little girl has been in so much pain and we never realized it until the last few months. She was diagnosed with lactose intolerance when she was 6 (it runs in the family) She managed it with a lactose free diet and lactaid pills. She did well for a number of years. Then in June of 2012 she was diagnosed with central precocious puberty by an endocrinologist, so after MRI's and ultrasounds were completed, she started a monthly Lupron injection. She is such a trooper to get that injection every month!! Starting August 2012 she began with more frequent diarrhea. She has had diarrhea off and on over the years, but nothing too severe. We saw her GI dr in late September because she started to complain of pain in her chest (heartburn). Dr rx prilosec and keep her on lactose free diet no lactaid pills. We noticed she had lost a little weight too. Well prilosec was helpful and after about a month or so we stopped it and she was fine, except diarrhea continued. I contacted GI dr and we began lab work, stool tests, urinalysis in preparation for a December visit with the Dr. Labs were abnormal Hemoglobin low, Sed rate and CRP high. Urine showed dehydration. C-diff was neg, but fecal calprotectin very high at over 1700 should be under 163. So on 12/24/12 we were at Children's Hospital for a colonoscopy and endoscopy for my baby.....Dr who did the scopes said it looked like Crohn's and that she had ulcers & inflammation throughout her colon. Her small intestine was inflamed and he could not get a good biopsy there. Our regular GI spoke with him and they started her on Prednisone, which is helping. GI Dr called us with biopsy results on 12/27 and its officially crohn's. We are keeping Grace on 5ml of prednisone until we see GI Dr on 1/3/2012 for full discussion. Other tests they did ruled out celiac and food allergies. We will get enzyme testing results next week. I have been doing a lot of research and these meds scare me!!! I did discover a thread on here for Low dose Naltrexone. It looks promising, but I have so many questions and concerns. Any advice/information would be greatly appreciated!!
12-30-2012, 02:17 PM   #2
Farmwife
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Hi and welcome. Sorry you had to find your way here.

I also have a Grace. She three and was dx on the 28th.
Her dear father and I knew for years something was terrible wrong but much like your Gracie, she hid it well. So getting a doc to take it seriously was hard since she's so darn cute and happy (I'm a little bias)
Has anyone talk to you about EEN? If not PLEASE look into that.
I'll be happy to give you more info on it if you don't already know about it.
I know more dear parents will be along to give wonderful advice.

Hang in there mom. This road will be bumpy from time to time but we're all here with our kids bumping along with you.
__________________
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
12-30-2012, 02:29 PM   #3
Grace's Mommy
 
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Hi and Thanks for your response. What is EEN? So sorry that your Grace only 3 has this too. It is just dreadful!!!
12-30-2012, 02:34 PM   #4
my little penguin
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Welcome
So sorry to hear your child was dx but glad you have answers.
Second looking into EEN it is as effective as pred in putting children into remission.
As far as meds they are scary but so is Tylenol if you read the whole pamphlet ( it can kill).
Number one cause of death for kids is a car accident ( 1 in 250)

So odds of a med causing an issue is in the thousands or tens of thousands.
Very low risk compared to under treated crohn's which can cause lots of issues.
The other problem is no one med is guaranteed to work for all.
We had one gi tell us there is no wrong way to treat Ibd only different ways and whatever gets your child to remission is the right one for the moment.
Some docs like top down- that way you don't leave the damage go on any longer than necessary. Some like bottom up start with the easy least effective drugs first hoping to have less side effects but potentially causing more damage as you slowly go through each to get to the one that works for your child.
Almost all children with Ibd need a maintenance med .
What that is depends on the extent of her disease and her docs.

Www.improvecarenow.org
Has a lot info including Ibd specialists across the country .

Get copies of all blood tests and pathology reports and imaging studies for your records .

Take a breath .
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12-30-2012, 02:46 PM   #5
my little penguin
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http://www.naspghan.org/user-assets/....29%5B1%5D.pdf

Paper on EEN
Exclusive enteral nutrition
Basically child is no foods and formula only
Preferable an amino acid or peptide based formula.

Your GI can prescribe it and then order it though a durable medical equipment supply company.
Your insurance may have a medical equipment clause.
My son drank all of his orally.
Others have used an ng tube .
12-30-2012, 02:51 PM   #6
my little penguin
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Peptamen jr

http://m.abbottstore.com/abbott/catalog.do?cid=2061136
Peptide junior
http://www.nestlenutritionstore.com/...FY-d4AodCTEAVw



Elecare
http://m.abbottstore.com/abbott/catalog.do?cid=2090262

Neocate
https://www.neocate.com/shop/c-6-nutricia-category.aspx
E028 splash
12-30-2012, 02:54 PM   #7
Grace's Mommy
 
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Our Gi Dr did mention they had just completed a study on a liquid diet for 6 weeks that increased remission rates for kids with crohn's. This must be what she's referring to. I will definitely look into it more. I know she wanted to discuss more details with us next week such as short term and long term treatment plans There is so much info out there. Trying not to get overwhelmed
12-30-2012, 02:56 PM   #8
Grace's Mommy
 
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Grace is on a bland diet for now which seems to be helping, but I'm sure the Pred is most responsible for that
12-30-2012, 03:21 PM   #9
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Hi Gracesmom
welcome to the club! sorry you had to find us but glad you did. my daughter Caitlyn was diagnosed four days before her eleventh birthday. it has been a rocky road for us but this forum has been a lifesaver for us. I wish we had found it right away. I am glad you have been looming at the treatments. I highly recommend considering EN as your first treatment to try. it is nice to hear an American doctor is considering it as a lot of them seem to be negative about it. for us LDN has been what worked but we tried a lot of other things first. keep us posted i.e. how she is doing.
__________________

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.
12-30-2012, 04:09 PM   #10
QueenGothel
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There is some great advice listed here. When thinking of EEN some people are scared of it thinking omg how can I get through the holidays or go to functions and I have to tell my kid she cannot have any food. Sounds hard to do. But trust us going with the meds sometimes but not always gives you the results you need. Sometimes you have to add things that are much more painful to have to do to your child... Enemas, suppositories multiple times a day. So in regards to the differences the EEN is a way happier road to recovery in the end. I imagine there is a huge adjustment period and doesn't always work forever or even at all but this can buy you some time and get her better and you more time to wrap your head around all the different treatments and medicines. You can always feel good knowing she is nutritionally sound. So you aren't being hasty and are thinking clearly. It is so hard in the beinning to even come to terms with the fact that this is a lifelong issue your child and you will be dealing with. Before long it will become your new normal and you will realize how to navigate through it all mentally.

We took the bottom-up approach and it failed to achieve remission. EEN wasn't an option bc my DD was UC and not Crohns. The best thing you can do for her and you is doing what you are doing now. Educating yourself and working towards and end goal of remission.

Regarding the Predisone. We had a love/hate relationship. Loved it when it work but it only took 6 months of use for us until we didn't get any benefit from it anymore. It is a the first med usually used to stop the damage before you can get something that works for long term use. I would say your first goal should be to get off of the Prednisone as soon as possible and stay off of it. (Easier said than done for many of us). Keep in mind the Pred is the big guns, can be way worse than your worse fears of some of the other meds your researching. Pred likes to make you feel safe and then the ween starts and your back to being a mess with a sick kid. Gradually as you go through this process, she will go on it and off it, depending upon the treatments chosen she might go on it again. There is always a time of Predisone ween and were some of the roughest times we have ever had in our lives so far. You'll get there I hope your first choice is the only one you need for a long time.

My best to you and your daughter Grace. Please keep us posted. This site has been a sanity saver for me and we all work towards helping each other through the journey. Sometimes when things get bad we don't have the time or the info we need and this forum has saved me on more than a few occasions in the last year.

Stay strong!

Mary
12-30-2012, 04:20 PM   #11
Dexky
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Welcome Grace's Mommy! I know all the info that may be thrown at you can get a little overwhelming. Actually, it doesn't take much to overwhelm me at all!! I have seen this link in a couple of posts lately and it is the most clear-cut explanation of Enteral Nutrition therapy I've seen. I would recommend reading over it before your next appt.. I wish I'd have been better armed when my son was dxed. Good luck!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
12-30-2012, 04:54 PM   #12
Devynnsmom
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Hello, and welcome to the forum. I'm sorry you had the need to find us, but this place is an AMAZING support!
My daughter Devynn is 11 years old and has Ulcerative Colitis. Devynn's symptoms started at approx 18 mos old. It was always always chalked down to a virus, or some other childhood sickness. But in my heart I knew something was very wrong. She was originally *unoficially* diagnosed with Crohn's disease in Dec 2009 after an upper and lower scope. Her diagnosis was changed in Feb 2012 to Ulcerative Colitis. Although I don't think her dr's are sure. We have been seeing her GI since Aug 2009, and were just referred to the IBD clinic and a new dr (thank goodness). We go see him for the first time in Jan.
I found the forum almost a year ago (Jan 2012) and have gotten a lot of support and advice.
Devynn has been on Pentasa, Mezevant and is currently on Sulfasalazine. We are trying to get her into remission right now.
Good luck! I hope Grace is feeling better real soon. ((((((hugs))))))))
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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
12-30-2012, 05:37 PM   #13
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Hi and welcome! Sorry to hear about your daughter's diagnosis. My son was diagnosed last year and was put straight onto the EN liquid diet for 8 weeks. I know it seems hard, but it is really worth it and has no side effects. My son hated the taste of the Modulen so he had the Nasal Gastric tube in his nose the whole 8 weeks - he went to high school with it in. It was worth it as we have managed without any Pred since.
I don't have advice on meds as we are just starting them in january. My son is starting the 6mp, so we shall see how it goes.
Good luck with the appointment, hope it goes well.
12-30-2012, 09:18 PM   #14
Farmwife
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Grace's Mommy
I tried to pm you back but it says your file is full. That's amazing since you just got here.
If it's a problem let us know. I'll try again a little later.

Do you know where her disease is located? How much damage is there? Have you had her vitimans levels checked?
12-30-2012, 09:27 PM   #15
Grace's Mommy
 
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They found ulcers and inflammation throughout her entire colon and inflammation in small intestine. Dr said biopsy results showed crohn's but I'm not sure which ones. They took biopsies from esophagus, stomach, colon etc. Pretty much everywhere. That's one of my first questions for the Dr on Thursday is where is the crohn's and how severe. Vitamin D level is within range but on low end. She sees an endocrinologist for her precocious puberty and we've had her on Vitamin D supplements for awhile now. Not sure if they'll need to increase the dose. What other vitamin levels should they be checking?? Another fact I find interesting is that I've read most crohn's kids have delayed puberty. Well my daughter's is early and she's been on hormone suppression injections monthly since July (Lupron). I don't know if the crohn's diagnosis will change the endocrinologist's treatment plan. I will check my inbox.....
12-30-2012, 09:36 PM   #16
David
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Welcome to the community. I'm so sorry to hear about little Grace I can't imagine how hard that must be on you, her, and your entire family.

The good news is you've connected with the other parents here. I'm continually amazed by what supportive, knowledgeable, incredible people they are. You're in good hands.

All my best to you and your entire family.
12-30-2012, 09:58 PM   #17
QueenGothel
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Have them run a metabolic panel and vitamin panel it will give you a better idea than any of us telling you what we do since we all do different things. The big ones that I know of are B complex esp B12, Vit D, Iron w/ Vit C. Depends really on the disease and where it is located and what is being absorbed and what is not. I always found nutritional shakes to be the best thing bc it covers everything without over doing anything. Doctors can prescribe them or you can by over the counter ones like PediaSure but most like peptide based bc it is easier to absorb for the proteins are broken down. But the taste is defiantly compromised.

Also certain drugs can cause different issues like bone loss so some have to use a lot of calcium to offset the meds. It is such a tailored disease.
12-30-2012, 10:03 PM   #18
AZMOM
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Hi Graces Mommy - glad (and sad) you are here but you're in a good place.

You'll want to write down questions for your visit. I would even make notes during. CCFA has a great website do familiarizing yourself with terms, med names, etc. and in my opinion, you've found THE best place for support.

Like Mary said, we too have a love/hate relationship with prednisone. It is a good "quick/temporariy fix" to stop the damage while you work with your doc to formulate a plan. My hubs use to joke it was Claires "fix a flat" to stop the leaking. Yeah.....he makes lots of bad jokes.

Big hug - keep us posted.

Julie
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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
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Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
12-30-2012, 10:07 PM   #19
AZMOM
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And one more thing......you'll probably find quickly that few kids meet the "cookie cutter" definition of a kid with crohns. Claire is just a few months from age 10 but the tallest kid in her class and normal weight when not in a flare.

All of our other specialists defer to the GI or at least always consult when changes are in order. Are your endo and GI at the same Hosp?

J.
12-30-2012, 10:17 PM   #20
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Both of her specialists are at Children's Hospital in Philly and regularly communicate with one another. I will ask the Dr about the metabolic panel and vitamin levels on Thursday. Stinks we have to wait, but at least she's doing a bit better on the Pred and is not in so much pain. The pain was the worst Thanks for all the advice
12-30-2012, 10:47 PM   #21
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Hi Grace's mom, I was you a year ago. Freaked out that my healthy perfect child suddenly had a serious chronic disease. Crohn's came to my daughter seemingly overnight. All I can say is run, do not walk, to buy the book "Breaking the Viscious Cycle" by Elaine Gottschall. This book, along with LDN, has kept my daughter off the scary drugs. It is not an easy diet to get used to, but when it works, it works. My daughter has been mostly symptom- free since June, and she showed marked improvement within 2 weeks of starting the diet. There is a lot of help out there if you look. I'm so sorry you are going through this; I know how hard it is.
12-31-2012, 12:19 AM   #22
Jmrogers4
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Welcome to the forum Grace's mommy, I'm sorry you had to search us out but you are in fabulous company.
My son was dx's at 10 he is now 13. My son is on LDN but has also been on Imuran and Methotrexate. I'm a fan of whatever works and gets them back to feeling like happy, healthy children again.
Keep us posted and hopefully we can help with any clarification on what the GI is talking about (not me necessarily as most of it just makes my head hurt) but there are so many on here that are able to explain things so that I can understand.
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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
12-31-2012, 03:19 AM   #23
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Welcome Grace's Mom! I am so sorry you have to deal with this nasty disease. This forum is fantastic and you will find so many warm and helping people here. It is hard now but time will pass and you will "get used to" worrying, checking, hoping, smiling at the smallest success and being disappointed some days too.

We have been fighting with CD for 5 years. My daughter is 12 now. We never tried EN as my daughter would never even try it. She used to be on MTX for a few years and it was great but after a while it wasn't enough. Now she is on Remicade and within 4 weeks (2 Remicade infusions) her blood test results are fantastic. I hope this continues and 2013 will be a good year for us. I wish you the same and am sure that this all shall pass and your daughter will feel better soon.

I have no good advice as far as docs and meds as we live in Germany and things are a bit different here - not better, not worse - just different...

Glad you found this forum!

Ania
12-31-2012, 06:30 AM   #24
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Hi Grace's Mommy and

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

I can't add to the fab advice you have already been given. Except to comment on your enquiry about bloods. Aside from the baseline ones that should automatically be ordered I would also request: B12, Folate, Iron Stores, Vit D (which will likely be done by the sounds of things), Magnesium and Zinc. I would ensure they do continued monitoring of CRP and ESR.

I would also include these sort questions at the consult, some are just for clarification of what you already know:

-What is the diagnosis?

-Where is the disease active?

-What form does the disease take (inflammation, ulcers, fistulas)

-How severe would you say the disease is?

-What symptoms do I need to report immediately to you, which can wait until my
scheduled appointment, and which signify an emergency?

-What treatment options are open to my daughter?

-What does (treatment) do? What side effects should I be aware of?

-How long before I should see an improvement?

-Does my daughter need to take any nutritional supplements such as b12 or iron?

Good luck! and be sure and keep us posted on how things are going.

Dusty. xxx
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12-31-2012, 09:31 AM   #25
Grace's Mommy
 
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Thanks for all the advice and questions to ask the doctor. My list is getting longer and longer. Right now evening time is very difficult for her. She seems to be so much better in the mornings, but by 5pm she's cranky and very picky about her food. Not sure if this is the Pred?? We split her dose 2.5 ml at breakfast and 2.5ml at dinner. Dr said we could split the dose or give it to her all at once. Not sure if it will make a difference to give it all at once??
Wishing all of you a Happy New Year!
12-31-2012, 09:37 AM   #26
QueenGothel
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The main issue we had with splitting the dose is my kid would have trouble sleeping at night. In the beginning we did split it to twice a day and then eventually we just gave it all in the morning. Be sure to give her the PPI an hour before the Pred for the stomach upset.
12-31-2012, 09:37 AM   #27
my little penguin
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We did a split dose so that the level is more even in the blood and less mood swings - but they were still there.
Evening is just tough in general.
We have a love hate relationship with pred as well.
It will get better.
Unfortunately it takes a long time
12-31-2012, 09:57 AM   #28
izzi'smom
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Hello and welcome!
On Pred-we split the dose as well. Moodiness was common for us with pred, and we also split the dose.
So glad that you found crohnsforum early on-they have been a tremendous amount of support for me over the past two years! Also thrilled that you are at one of the top three childrens IBD hospitals in the region- it is popular for second opinions and our GI trained there.
You have been given great advice already, but I wanted to comment that the meds CAN be scary. I refused to put dd on Remicade until we traveled to Boston Childrens for a second peds GI and our GI consulted his former colleagues at CHOP and they all agreed. I also needed to take into account the potential effect of untreated Crohns-it helped bring the potential risks of the scary drugs into perspective. I wish none of us had to put our babies on ANY of them...but sometimes we do.
Glad she is having less pain and WELCOME on board...keep us posted!
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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.
12-31-2012, 11:30 AM   #29
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On Prednisone...we were told not to split it and Kasia took it in the morning as they said the natural level of steroids is the highest in the morning so with the "outside" dosage the result will be better. Of course as I said before, they do it differently in every country and it is hard to say which one is better :-). Just wanted to give another opinion....

Kasia didn't have any great mood swings - just a bit more energetic after some an hour or so and then later more sleepy. This was during summer vacation so being sleepy wasn't a problem (she actually didn't sleep more then maybe twice, she was just tired) I can imagine this could be a potential problem when at school.

Ania
12-31-2012, 02:05 PM   #30
DustyKat
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If there are issues with wakefulness at night I would recommend that you do a full dose in the morning otherwise there is no issue with splitting the dose.

Dusty.
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