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Crohn's Disease Forum » Parents of Kids with IBD » New Diagnosis for 9yo son--positive messages please?


08-24-2014, 04:27 AM   #1
Lindseyw4
 
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Location: Evanston, Illinois
New Diagnosis for 9yo son--positive messages please?

I just joined this forum this morning. I have read a few posts and you all seem like a great bunch so far, although honestly I'm not very thrilled to be in the situation that brought me here and am still in disbelief and shock. I hope I will find some comforting words from you all as a single parent with a 9 year old just diagnosed with Crohn's.

He had been having symptoms for a very long while, at least a year but perhaps 2 before we finally got down to some testing that led to his diagnosis. I feel horrible it's been that long. Our primary care doctor brushed his symptoms off as poor diet, and my son never complained. I could just tell he was going to the bathroom a lot and seemed uncomfortable. So we just began seeing a GI APN this summer (on my own referral...doctor suggested he cone for another checkup...negligent jerk!) and got our diagnosis on 8/22 after a biopsy from a colonoscopy. The colonoscopy also showed a fistula, so we will soon be going for an MRI to investigate more and I suppose make a plan for surgery? We won't actually meet his Crohn's doctor for a couple more weeks so we still don't have a treatment plan or anything.

I'm grief stricken at the thought of my child suffering for the rest of his life with this 😞 His name is Cameron and he wants to be a video game designer when he grows up. He has been playing baseball for 2 years and does not yet have a position but prefers second base. He has the greatest circle of friends. He is a big brother to a 3yo sister and newborn brother. He is a very good reader, rather advanced for his age, and also enjoys science. He is a very noble, quiet, and sweet kid and it just hurts to know he will always have this. He copes well with the pain and diarrhea but the testing and meds have been hard on him. He is the kind of kid that gets deathly scared over a blood draw or shot. He was so scared when he was being put to sleep for the colonoscopy. I told him about the MRI coming up but not the surgery. Trying to let him take it one thing at a time.

Obviously, I'm hoping he will never experience any complications related to the disease. However, after reading some of you all's posts, I'm thinking i'd be better off ensuring he has the strength, courage, and confidence to overcome whatever challenges he must face.

As a single mom it is difficult for me because i feel very alone in my feelings--no other person to lean on our relate to. I also have feelings of resentment toward my child's father because I know nothing of his history on regards to this and feel like he should be worried over our son too. It's also a challenge finding care for my other children with my oldest's testing and what not. I just had a baby 3 weeks ago and am trying my best to keep him close to me. I was already balancing a lot without all these appointments, tests, and medicine to administer to my scared and confused little boy 😥

What I am most concerned about right now is school. Have kids still been able to be successful in school? He has never had to miss school but I'm afraid that may be in our future 😳
08-24-2014, 06:37 AM   #2
DJW
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Hi and welcome. I'm sorry hear of your sons diagnosis. We have a great group of knowledgeable parent, Isure tthey'll be along soon.

This news always brings an adjustment period and time of grieving. Try and take it a day at a time. Kids are incredibly resistant. Knowledge is power.

I do want to try and offer some hope. I was diagnosed young with severe crohns. I've had school success and graduated from college and university. Sports have always been part of my life. Currently I'm putting together a business plan to launch my own business.

Sending you both my support.
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Ileostomy at 19

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08-24-2014, 06:49 AM   #3
my little penguin
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Big hugs !!!
My DS was dx at age 7. He is 10 now.
They should have started him on meds already .
Typically something for inflammation either EEN ( formula only no food ) or pred ( steriods)
Maintenance meds usually are also started at the same time since they take a while to work.( 6-mp or since he already has a fistula -remicade)

I would call another large pediatric Ibd center for a second opinon about the surgery.
Cincinnati children's wouldn't be too far from you.
Even if they just do a record review ( biopsy slides test results MRI results etc).
Record reviews don't require you to physically go to the place.

Make sure to get copies of all bloodwork and pathology /MRI reports for your records .
Things can get back to normal
Just be prepared it may take a while months to year sometimes two .
The disease didn't appear over night and takes time to heal once your on the right meds.
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08-24-2014, 06:56 AM   #4
my little penguin
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Slides on EEN
08-24-2014, 07:33 AM   #5
malorymug
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Hi. Welcome and sorry you had to find us. My 13 year old was diagnosed just last April. Also with a fistula (no surgery so far). I agree with DJW, there is a grieving and adjustment period, it will get better. My son is tremendously better after 5 months, and got better quickly after diagnosis with meds.
This forum has been a great source of information and support for me, I hope we can help you too.
__________________
Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
08-24-2014, 07:39 AM   #6
CrohnsKidMom
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Welcome to the forum, but so sorry to hear of your son's dx. I have a 9 yr old son too, also wanting to be a video game designer when he grows up! He was dx'd last yr at age 8. My son became ill quite quickly and had a prompt dx, but when I think back, he had signs of Crohn's back to when he was a toddler. Good for you for taking the matter into your own hands when your family dr wasn't taking things seriously. It's too bad it had to come to that though.
Now you have to start thinking of treatment, which as MLP said, will likely be either EEN-formula feeding only to allow the gut time to heal itself-or Prednisone to treat the inflammation. A maintenance med should also be started as EEN and Prednisone are first line treatments and cannot be used on a long term basis. There will likely be more testing. My son was terrified of needles and IVs when this began, and although he still gets a little nervous over them, it's far less traumatic.
As DJW said, take one day at a time. This is the hardest part, and although it will take time to get your son feeling well again, you will see improvement once treatment begins. And take care of yourself. You have a lot on your plate and I'm sure you're feeling quite stressed. You will find this forum to be a great place for information and support, so visit often. Take care.
08-24-2014, 12:10 PM   #7
Maya142
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Hi and welcome!
Sorry to hear about your son's diagnosis. My daughter was diagnosed at 16 and is also an anxious kid, though not afraid of medical stuff, mostly because she has another chronic illness (juvenile arthritis). Seeing a psychologist helped her immensely. It did take a while to find a good psychologist (we had tried two that she didn't like) but then she saw one at the IBD clinic in the Children's Hospital we go to, and it was a huge help.

In terms of school, it definitely is possible for your son to be successful. My daughter is entering her senior year and has done very well in school so far. She wants to go into research (mostly to make better drugs!). A 504 plan has been really helpful in making sure she has the accommodations she needs.
Hang in there, the first year is the most overwhelming.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-24-2014, 03:33 PM   #8
Jmrogers4
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Hello and welcome I'm sorry you have had to join our club. My son was dx'd at 10 he is now 15. He also plays baseball (2nd base) and the disease has not held him back as far as baseball is concerned.
Your are in the steep learning curve phase and it seems that so much is being thrown at you when you just want to make it all better plus you add in a newborn and the lack of sleep and hormones that go along with that I can see where it would seem overwhelming. Just take it one step at a time deal with what is right in front and move on. Remember in reading through this that a lot of the people that post are not in a good spot, those that are in remission are out enjoying life and not thinking about their IBD for the most part.
Once you get a plan in place then the testing in done mostly on a regular schedule. My son is currently on remicade and in remission so we have labs done at his infusion every 8 weeks and other then that he doesn't really even think about his crohns just lives life as a normal teenage boy.
A lot of the other medications will have labs often in the beginning but then if everything is okay will become spaced out and regular.
I hate to say it and it's sad but most of the kids quickly become used to blood draws. Some have used bribes, a numbing cream or a buzzy bee to get through them at first.
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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
08-24-2014, 04:56 PM   #9
Lindseyw4
 
Join Date: Aug 2014
Location: Evanston, Illinois
Thank you all so much for your encouraging words! They've already helped to lighten my heart ☺
I'm kind of looking forward to getting a plan in place now to make things smoother and more predictable.

I very much like the idea of getting a second opinion. We're currently getting treated at Lurie's which appears to be state of the art. However, i don't trust based on popularity!

Right now he's on flagyl, prednisone, omeprizole (sp?) and one other med i can't remember the name of. He's also on an iron supplement. I intend to set up a siggy soon!
08-25-2014, 07:41 AM   #10
greypup
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I just want to say, hang in there. You're getting loads of great advice and always will on this forum.

My daughter was dx'd over a year ago. She is much better today.

There is so much to adjust to. I hope that you will find a good friend or other family member to lean on.
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Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
08-25-2014, 11:59 AM   #11
Henrietta78
 
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You are obviously a very caring, loving and articulate mom. My son was diagnosed with IBD indeterminate (meaning neither UC or Crohn's definitively) when he was 2 and is 5 now. At this point, his dr. says he is in remission. Nobody would guess that he has IBD, he lives a totally normal life. There are still times I feel overwhelmed knowing that he has a chronic condition that must be managed with medication, extra appointments, extra attention to things that most parents take for granted. Give yourself a big hug; sounds like you have a lot on your plate, and this forum can be a resource of knowledge and support for you.
08-25-2014, 02:05 PM   #12
CDJ
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Sorry you had to find us, but welcome to a very caring group
Your story sounds very similar to mine. I am also a single mum. My son was showing signs of crohns for 18 months - 2 years before our GP started to take things seriously --- well before I insisted that we had a referral. Josh was 8 when diagnoised and is now 13. He too was only diagnoised after a colonoscopy and it was found he had a fistula. So far he hasn't needed any surgery.
It isn't always an easy journey, especially trying to work out the right medication, but on the whole Josh leads a really normal life, rarely misses any school and he is just a normal child.

As a single parent it isn't always easy dealing with this on your own. My son does see his dad at times, but he has no understanding of what his son has to deal with, so I am very much on my own. But we manage and just get on with everything because we have to.
Hopefully you will have some support round you. It is hard when you first get this diagnoises, but once Cameron gets on the right meds and feels better things will settle down.
__________________
Son - -14
diagnosed 29/10/2009

Taken off azathioprine Jan 2011 due to needle phobia
carried on with just pentasa until March 2013

6 weeks Modulen Dec 12 / Jan 13

Finally overcame needle phobia after 3 very long years due to getting right help.

Currently on
125mg Azathioprine
3000mg Pentasa
20g Omeprazole
20mg Buscopan
5mg Prednisolone
Isoniazid
Pyridoxine
600mg ferrous gluconate
250mg zinc
Started Infliximab 18/03/15
08-25-2014, 11:16 PM   #13
Brian'sMom
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So sorry to hear your child has crohn's. Much of the good advice has already been given in posts above. One thing I may add... remember on here that every crohn's kid has his/her own path. This is a good place to get help on particular subjects, medicines, doctors, and many other things. But don't let others' stories scare you into thinking that will be your son's future. I have learned so much on here. My son has become one of the more difficult cases... but every crohn's kid's 'crohn's' is unique. Hang in there mom!! And lean on any of us whenever you need to. There is a wealth of info to be had if you need it, along with a wealth of love and compassion from people who "get it"!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
08-26-2014, 11:28 AM   #14
araceli
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Welcome to the forum. Sorry you had to find us. My daughter was Dx at 14 when she was a freshman at high school, at the beginning was hard to keep up with school work due to numerous appointments but it got better, she graduated with honors and very high gpa. She started University this week. This forum have been my mind saver. Feel free to ask questions or simply vent away when you need to. I hope your son finds remission soon.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
08-26-2014, 02:30 PM   #15
JenniferJuniper
 
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I am also new here after my 13 yr old son's dx last month. I can't offer much in the way of advice yet, but I do know that the folks here are a wealth of advice and support.

I have been stuck in the grief stage since we found out, but yesterday's first treatment has kicked me in the butt and helped me toward acceptance.

If you ever need to talk feel free to message me. Good Luck.
08-29-2014, 08:13 PM   #16
farmerswifey
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Welcome to the forum, sorry about your sons diagnosis. My little boy was diag with Crohn's at aged 9, he is now 11 and doing well, the early days are hard but hang in there, keep posting here and you will get lots of advice and kind words xx
__________________
Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012
6mp
Allipurinol

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
09-04-2014, 03:37 AM   #17
Lindseyw4
 
Join Date: Aug 2014
Location: Evanston, Illinois
Thank you all so much! It's really comforting to know that this is a grieving stage and it will pass. I feel much better after meeting with the doctor today. He took my son off Pentasa, which he was taking 3 capsules of 3x day. So happy to have that out of the mix! Spent so much time taking it since he can't swallow pills yet And had o take it in applesauce. Hoping his labs will show that we can take him off his iron supplement soon. No formula needed either 😀 the doctor said he will probably put him on 6mp depending on what labs from today show in regards to inflammation. He also said he thinks the fistula must be small based on his own observations. Just waiting for this MRE we have next week. Not talking about it much with Cameron since it really produces a lot of anxiety for him. But, PP was right--he was much less nervous about his blood draw today. I told him if he could handle the scope, a poke on the arm is nothing! He must have agreed 😄 I'm a bit more hopeful and optimistic now, although i feel i need a nurse or something when i take him for these appointments and talk with him about it or give him his medicine because mentally and emotionally it's just so tough! I'm also now a bit scared of lymphoma. The doctor said the risk only increases from 2 in 10000 to 4 in 10000 but if you think about it, that's doubling his risk! He said Cameron is much more likely to suffer complications from Crohn's without treatment...but which is worse? Likely the lymphoma 😞 what a juggle this is!
09-04-2014, 04:35 AM   #18
my little penguin
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Risk
Did he ride in a car ? Or swim?
Risk of dying from a car 1 in 250
Risk for swimming 1 in 1000.

Also there is a risk of obstruction, stricture or surgery if you under treat crohn's.
And cancer from under treated crohn's.
These are known risks .
Tyelonol can cause death and liver damage - again a risk but we are being told about them. Since its small.

DS took pentasa ,6-mp, Mtx , remicade and bniw humira plus Mtx.
Goal -normal of life as possible and keep the gut as healthy as possible.
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