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Crohn's Disease Forum » Parents of Kids with IBD » My son was just diagnosed!


04-14-2017, 07:49 PM   #1
ValerieB
 
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My son was just diagnosed!

Hi all! New to this all! My boy, Aden, was just diagnosed with Crohns. He is 16 years. We are going through a whirlwind and don't quite know what to do. I am looking for support, advice etc. Thankyou!
04-14-2017, 08:25 PM   #2
malorymug
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Hi. Welcome. I'm sorry you had to find us, but I'm glad you are here. It is overwhelming. Once you get through this steep learning curve, you will find your new normal, and it will settle down. My son is 16 as well, he was diagnosed 3 years, and while we know a lot, we still have surprises and struggles with growing up with crohns. Please feel free to ask questions and read through some older threads.
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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
04-14-2017, 08:48 PM   #3
Maya142
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Hi and welcome. Sorry you have to be here. The first few months are extremely overwhelming. My daughter was also diagnosed at 16 with Crohn's. It was a huge shock. It took a while, but we were able to get her into remission using a combination of medications.

Do you have any specific questions? There is a lot of info on the forum - about meds, diet, managing school, applying to college -- anything you can think of!
__________________
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
04-14-2017, 10:12 PM   #4
Ricky_V
 
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Hi and welcome. I have 2 daughters with Crohn's. This forum is a great resource, keep us posted on your progress. Make sure you have a GI well experienced with treating Crohn's. Hope you have good health insurance you are going to need it. Good Luck!
__________________
_________________

Renee (23) dx 9/15 - Status: Feeling Good

Current Meds:
Remicade 7.5mg every 6 weeks
6MP @ 100mg /Day
Omeprazole
Vitamin D2 50000iu /Weekly (Prescription)

Supplements:
Multivitamin
Caltrate
Vitamin D3 1000iu /Day
VSL Daily Probiotic
Organic Apple Cider Vinegar

Failed Meds:
Humira

Gall Bladder removed 4/16

_____________________

Julia (20) dx 6/08 - Status: Remission 9yrs
Current Meds:
6MP @ 100mg /Day

Supplements:
Multivitamin
04-15-2017, 01:30 PM   #5
ValerieB
 
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I have so many questions I don't know where to start. Let's start with school. Aden has missed most of the year already. Did you all experience this and if so what did you do about make up and future school days.

When on antibiotics, do you incorporate pro-biotics into their regimen?
04-15-2017, 01:39 PM   #6
Maya142
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Does your son have a 504 plan? If not, I would get him one ASAP. CCFA has a great template:
http://www.crohnscolitisfoundation.o...-504-plan.html

Here is info on 504 plans:http://www.crohnscolitisfoundation.o...tsheet0816.pdf

The school is required by law to accommodate him. Things like access to the bathroom -no questions asked, stop the clock testing, extensions for assignments if necessary, not being penalized for absences, two sets of books, being allowed to carry a water bottle at all times - things like that are listed in a 504 plan. There may more or fewer accommodations, based on his condition.

If he is really sick and unable to go to school at all, then they may decide to put him on hospital/homebound schooling for a while. A tutor would come to your house for a couple hours a week to catch him up on school work. We have done that in the past. Obviously, it's used as a last resort - being in school is preferable, for both the kiddo and the school! But it is an option for a child who is very sick and unable to get to school.

We do give probiotics with antibiotics. We use Culturelle. Some parents use VSL#3 which is a prescription strength probiotic.

I'm going to tag other parents with teenagers:
my little penguin
pdx
Tesscorm
Clash
Mehita
Jmrogers4

What medications is your son currently on?

Typically, doctors will start with either steroids or exclusive enteral nutrition (a formula only diet - no food, only shakes) to induce remission. A maintenance medication is started at the same time, since they all take a while to work. Usually an immunomodulator like 6MP or Methotrexate or a biologic like Humira or Remicade, or some combination of them.

It does take a while for kids to start feeling better - hang in there!
04-15-2017, 01:58 PM   #7
ValerieB
 
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My daughter had to show me how to add a signature to include medications. I think I did it.

We started a IEP process. He has missed so much school that the assessments have not all been completed. I hope they will be by the end of the school year. What about summer school?

Have any of the kids have cognition issues? Memory or balance?

Aden is on:

Alinia
Levofloxacin
Doxycycline
Omeprazole

Diagnosed on April 3rd, 2017 after a colonoscopy and endoscopy.
MRE schedule for April 28th and shortly after infusions will start.
04-15-2017, 02:22 PM   #8
Maya142
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I am confused by the antibiotics - they're not ones used often for Crohn's. Typically Cipro and Flagyl are used for Crohn's.

Doxycycline and Levofloxacin are pretty hard on the belly - that could be causing his symptoms, or at least adding to them. My daughter has been on them for other infections and had a horrible time with nausea/diarrhea while she was on them.

What is he on them for - an abscess?

By infusions, I expect you mean Remicade. The good news with Remicade is that it is one of the fastest working drugs (relatively speaking -- it usually takes 6 weeks or so to respond). Some kids are lucky and respond immediately. Others take quite a while and need dose or frequency adjustments. Hopefully your kiddo will respond quickly.

My daughter took about 3-4 infusions (6-10 weeks) before she felt a LOT better. But we saw an improvement by the second infusion (2 weeks).

The infusions themselves are very easy - just an IV poke. My daughter liked to watch TV and nap during the infusions. She also loved that she got to miss school and since we went to a children's hospital, they made quite a fuss of her!
04-15-2017, 02:32 PM   #9
ValerieB
 
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OK, so apparently Aden has h pylori. Hence the heavy duty antibiotics. Yes, his PEDS GI said Remecaid for the infusions every 4-8 weeks. My son never complains that much. He seems to be doing ok on Doxycycline and Levofloxacin.

We have made a huge change in diet. How about you?
04-15-2017, 02:43 PM   #10
Maya142
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That makes sense.

My kiddo has other issues - Gastroparesis or delayed gastric emptying - which affect her diet. She does well with low fat, low fiber foods. Can't really tolerate red meat. She is lactose intolerant, so we use lactose free milk and she tries to limit cheese.

She has struggled with weight loss and after many years of being severely underweight, she got a feeding tube. About 40% of her calories come for formula - Neocate.

That has helped a lot - now that she is getting proper nutrition and has gained weight (25 lbs!) she has much more energy, her bone density has increased and she feels MUCH better.

Diet is very individual but many kids are put on supplemental enteral nutrition to help with weight gain and growth. There is also some evidence that formula can help maintain remission. It can certainly induce remission but only if it is used exclusively (exclusive enteral nutrition -EEN) for 6-8 weeks.

Some kids choose to drink the shakes and others prefer using a feeding tube. My daughter started off with drinking them, but just could not drink enough to maintain her weight, much less gain weight. So eventually we went to a feeding tube.

Feeding tubes are MUCH less intimidating than they sound. We started off with an NG tube which she inserted every night, did overnight feeds and removed before school started. No one at school had to know! I was really shocked by how easy it was and how quickly she got used to it.

She now much prefers a feeding tube to drinking the shakes, though some kids have no trouble at all drinking them.

Typically, you starts with shakes like Ensure or Boost which are polymeric and available easily at a grocery store or pharmacy. If the kiddo cannot tolerate those, then there are more broken down shakes - semi-elemental shakes like Peptamen Jr or Pediasure Peptide. Finally, some kids need elemental shakes (broken down into amino acids) like Neocate and Elecare.

Every GI is different, but ours had us start with a semi-elemental shake (Peptamen Jr) since IBD kiddos have trouble digesting anyway.

Good luck!
04-15-2017, 04:48 PM   #11
ValerieB
 
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Ricky what is the apple cider vinegar used for?

How much weight did your kiddos lose before you started panicking. My son started at 135 (his highest) and is now at 117. We didn't start worrying until I found out he had been having lots of blood in his stool. We went to the ER and were referred to our Pediatric GI (whom is amazing).
04-15-2017, 04:52 PM   #12
Maya142
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I would ask your GI about his weight if you are concerned. Supplemental EN is a good way to get his weight back up.

My daughter lost a lot of weight. She was 82 lbs and had a BMI of 15 at her lowest. She was very underweight.

In hindsight, I wish we had started supplemental shakes much earlier - and gone to a tube earlier when she was unable to drink them. She developed many complications, including an arrhythmia from being underweight, and was hospitalized 3-4 times just for her weight. I wish we had gotten it under control much earlier...
04-15-2017, 05:05 PM   #13
ValerieB
 
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We will see her on Wednesday. I will bring that up.
04-15-2017, 05:29 PM   #14
Jmrogers4
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Welcome, sorry just saw the tag,
Maya has already given some great advice, my son is 17 diagnosed at 10 and weight loss can be relative to a lot of things and really trust yourself when you think too much weight has been lost my son was 80 pounds and 5 feet in 9th grade so a weight loss of 5 pounds was huge, he's 6'1" tall now but only 140 pounds however we are not worried about weight as he is just naturally really thin ( so is his non ibd brother) so a 5 pound weight loss would bear watching but not cause for alarms. That all being said your son has lost a significant bit of weight and really if there is not another reason for the weight loss is something to watch (my son will generally lose weight when he is sick with a cold or something as he loses his appetite but will bounce back when he feels better)
We've done supplemental EN in the past to increase calories and try to increase weight and did have some success but it was not until he achieved remission that we saw a significant change in his growth and development. He was one of the lucky ones and his appetite came back (after being virtually non-existent for 3 years). Weight came first then height after about 6 months. He started on remicade in 9th grade at 89 pounds and 5'1" he is now a senior in high school and is 6'1" and 140 pounds and has been in remission since starting remicade.
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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
04-15-2017, 05:42 PM   #15
ValerieB
 
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Thankyou Jacqui. Aden is 5 feet 10 and is down to 117 pounds. I have a question. How can the Dr.'s tell if our kids are in remission? Is remicade something that is continued even after remission is achieved. Did any of your kids have a MRE to help with baseline?

Aden is on:

Alinia
Levofloxacin
Doxycycline
Omeprazole

Diagnosed on April 3rd, 2017 after a colonoscopy and endoscopy.
MRE schedule for April 28th and shortly after infusions will start.
04-15-2017, 05:58 PM   #16
Tesscorm
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Hi Valerie,

My son is 22 but was diagnosed at 16. By the time he was diagnosed, he'd gone from 145 lbs to 125 lbs (he was 5'10").

My son used exclusive enteral nutrition (EEN) to induce remission. He did six weeks of the formula only diet, using an NG tube at night. After the six weeks, he reached 'clinical' remission (clinical means no outward symptoms), and then his only treatment was supplemental EN for almost two years. While this is not the normal treatment course (ie no meds), the supplemental EN did keep his crohns under control. However, once we transferred to an adult GI, MREs continued to show inflammation (even without any outward symptoms), so his adult GI added remicade. Subsequent MREs and scopes have shown all inflammation has cleared.

He's now been on remicade for approx. 4 years and has had no problems with remicade nor the infusions. We have noticed that he has developed more frequent infections (bronchitis, etc.) over the last couple of years but I can't say for certain if it's related to remicade or just a couple of bad years??

Re supplemental EN, prior to starting remicade, my son was taking in 1500 calories/day in addition to his regular diet. Once he started remicade, we tapered down the supplement EN but, even today, he continues with 1-2 Boost shakes most days. (Helps increase his nutritional intake and he'll often drink them instead of grabbing junk food for breakfast or a snack.)

Over this time period, he's physically matured and gained almost 50 lbs. He's now close to 6' and 175 lbs. Since being in remission, crohns has not affected his lifestyle (ie at school, travels, plays sports, etc.)

Hopefully, the h.pylori will clear up quickly and the remicade will kick in to bring him to remission. Once there, he should be able to attend school, etc. (But, in the meantime, I do urge you to make arrangements with his school...)

__________________
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
04-15-2017, 06:00 PM   #17
my little penguin
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Remicade is done for life
Basically until it stops working or the kiddo has a allergic reaction
That said for most it eventually stops working

Ds was on remicade for 8 months . He had an allergic reaction . But he reacts to food bees etc... so it was expected
He switched to humira five years ago and added mtx for arthritis .
He was dx at age 7 and is now 13.
He used peptamen jr as een and then as a supplemental formula from the start
This has slowed him to grow and gain .
In 7 years he has gain 62 lbs and grown 6 inches .

He now drinks neocate jr chocolate as about 40% of his calories due to gastroparesis.
This accounts for why he has trouble with high fat and fiber

Highly recommend formula for weight gain
Ds does not have a tube but drinks his all orally

Some kids use pediasure /ensure or kids boost
Which is polymeric

Good luck
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04-15-2017, 06:24 PM   #18
Maya142
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Remicade is used until it stops working. Even he goes into remission (which I hope he does soon!) it will be continued till he stops responding to it.

They would use scopes/an MRE to figure out if he's in remission. Clinical remission is absence of symptoms but the goal really is mucosal healing -- complete healing of the bowel. It usually takes months for that to happen.

My daughters are both on biologics and neither of them has had trouble with infections or anything like that. In fact, they've had no side effects at all with biologics.

Most kids will have an MRE after they are diagnosed (or to diagnose them). It's pretty standard. It's not too bad - they do have to drink some contrast (usually Breeza or Volumen) which is not fun. He will also get IV contrast. But besides that, all they have to do is lie still in the machine - for about 45 minutes to an hour. Getting the contrast down is the hardest part.
04-15-2017, 06:55 PM   #19
Ricky_V
 
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organic Apple cider vinegar reduces acid in the stomach. She takes 1 tsp/day
04-15-2017, 07:20 PM   #20
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I am looking for a high protein high calorie breakfast smoothie made with coconut milk and honey?
04-15-2017, 07:57 PM   #21
my little penguin
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Semi elemental or elemental Formula works better
More broken down and easy to absorb
Smoothies are fine but replace regular calories so so the kiddo still doesn't eat more

Formula when used without food heals the gut as effective as steriods

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462720/
04-16-2017, 01:13 PM   #22
ValerieB
 
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Thank you! How about joint pain everyone? Do your teens complain of it?
04-16-2017, 02:48 PM   #23
my little penguin
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Ds has arthritis as part of his Crohns
https://www.spondylitis.org/Enteropathic-Arthritis


Joint pain is common with Crohns
04-16-2017, 02:53 PM   #24
Maya142
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My kiddo also has arthritis. Spondyloarthritis is associated with Crohn's.

Joint pain (arthralgia, not arthritis) is also common with Crohn's. In most cases, once the Crohn's is under control it goes away.

It is slightly more complex if there is arthritis - sometimes it responds to the same treatments as the Crohn's and other times it needs to be treated with additional medications.

Either way, seeing a pediatric rheumatologist is a good idea. They can help diagnose the issue (joint pain vs. arthritis) and can help with treatment. Your GI can most likely refer you to a rheumatologist.

Common signs of arthritis include morning stiffness, pain that gets better with movement and worse with rest (sitting through class, sleeping), red, warm or swollen joints and of course, pain. Joints that are often involved are the knees, ankles, heels and hips but honestly, any joint can be involved (including hands, elbows). The SI joints can also be involved - if your son has lower back pain, it's important to see a rheumatologist ASAP.

While you are waiting, heat and ice might help.
04-16-2017, 02:54 PM   #25
Maya142
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CCFA has a good explanation of the kinds of arthritis associated with IBD: http://www.crohnscolitisfoundation.o...plications.pdf
04-16-2017, 02:56 PM   #26
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Oh my gosh! Day before yesterday Aden started complaining of lower back pain! I am not sure what to do. I feel bad for him! Tell me more about the lower back pain.
04-16-2017, 03:05 PM   #27
Maya142
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SI joint pain/lower back pain is often sacroiliitis (inflammation of the SI joints) and a part of axial spondyloarthritis. It's also called enthesitis related arthritis or juvenile spondyloarthritis in kids or sometimes enteropathic arthritis (many names for the same thing - I know it's very confusing).

It's important to treat it because sacroiliitis can be hard to control. You also do not want the inflammation to cause any permanent damage to his SI joints.

Axial SpA can only be treated with NSAIDs (which are usually not an option for IBD kids) and biologics. The GOOD news is that he is going to start Remicade anyway, right? So hopefully that will work for BOTH the Crohn's and the arthritis (if he has it).

Both my girls have axial spondyloarthritis. Both have damage to their SI joints. Both are treated with biologics. My older daughter is on Humira and doing well, the younger one has much more aggressive arthritis and we are still working on getting it under control.

A pediatric rheumatologist will usually diagnose SpA based on a physical exam and symptoms. Usually an MRI will also be done to check the SI joints. Sometimes x-rays will be done too, but often x-rays are normal in kids. X-rays only show damage and not inflammation, and damage can take years to appear, so that is why they're often negative with kids. An MRI, on the other hand, will show inflammation.

Blood work may also be done. Some kids have elevated inflammatory markers (ESR, CRP) and others don't. Some kids have a gene associated with SpA - HLA B27. Both my girls and my husband (who also has SpA) have it. But you can have SpA without having that gene.

Spondylitis.org has a lot of good info.

I would just try to see a rheumatologist soon, so you can figure out what is going on.
04-16-2017, 03:10 PM   #28
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Thank you so much for this information! So valuable!
04-16-2017, 10:23 PM   #29
Jmrogers4
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Tess already gave you definitions of remission. J has had no symptoms and several fecal calprotectin tests have showed no inflammation. We will be doing an MRE in the next couple of months to further confirm before he leaves for college. We are doing MRE in place of scopes because scopes done 10 months before last MRE looked great but MRE showed massive inflammation in small intestine where scopes can not reach.
When you find something that works for your son you don't want to do anything to rock the boat, there was talk of switching to humira for college but he is doing so well on remicade we don't want to change anything for fear of backsliding and not being able to get him back to his current state. Once you stop remicade it is not always possible to restart and many people develop antibodies and can't use it. So at least in our case we're going to stick with it until it quits working (for what it's worth remicade also took away all his joint pain but he was never diagnosed with arthritis)
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