5 yr old with Crohn's

[Chris_k]

Hi there. My 5 yo was recently scoped and has massive inflammation throughout intestines (pancolitis). Docs are saying it's likely Crohn's although CRP, cal protectin, and ESR were all normal. My son's symptoms are poor motility, bloating, no appetite, no growth. Everything I've read about kids this young with Crohn's is pretty depressing. We began Entocort and Pentasa two weeks ago. First week was great but after that back to the usual bad. Anyone else here with a child dx'd this young? My son has gained zero weight in over a year. He is the size of a three year old. What do parents do for appetite? Mine eats about 1000 calories a day max and even that is a struggle.

 

[DJW]

Hi and welcome.
Sorry you son is sick.
We've got a great group of parents here.

Sending you both my support.

 

[Mr chicken]

Sorry to hear about the dx
My kiddo who is 11 was dx at age 7 but has had symptoms since birth.
Finding the right med is key to being normal
5-Asa (pentasa ) are generally useless in Crohn's disease but extremely effective in ulcerative colitis .
Some Gi start with them for Crohn's disease but most feel they are about as helpful as giving aspirin to a brain tumor patient - not going to help much but not going to hurt either.
If symptoms don't dramatically improve after a month in pentasa they probably won't and you may need to ask to move one.
Typically kids are classified as moderate disease of they have growth/weight failure .
Moderate disease tends to require 6-mp/Aza or methotrexate.
Some kids needs biologics .
Ds started remicade at age 8 after a year of trying to get his symptoms under control with the other meds.

Weight wise - formula formula formula .
Kids with crohns need more calories than the average kid due to inflammation ( burns a lot of energy )
There is een ( exlcusive enteral nutrition-formula only no food ) used to induce remission ( mucosal healing and get nutrition back to normal ) - some use pediasure/kids boost for this
Others need more broken down formula like my kiddo -which is where peptamen jr comes in.
Ds started een with peptamen jr when he was 7 for 9 weeks.
Instead of steriods . It took a few days of tears but he drank it
Now he still drinks it and can drink two in less than five minutes.
Very early onset crohns ( dx before age 6) needs to be tested for chronic granulomatous disease since both look identical on the biopsy slides .
50% of kids with Cgd develop veo-ibd.
After Ds 9 weeks of een ( he started on pentasa as well did nada )
We kept him on 2-3 peptamen jr a day .
Since staying on the peptamen jr for the past 3+ years he has gained 40 lbs and grown almost 10 inches .( it does work )
Currently Ds is on pen exclusive crohns diet
Partial enteral nutrition plus a very restrictive list of foods due to abdominal pain.
It has worked wonders .
Thread on the diet here
http://www.crohnsforum.com/showthread.php?t=71686
( I was my little penguin at one point )

Ds has normal crp/sed rate mostly normal fecal cal
Even his scope looked ok but biopsy showed granulomas and chronic/acute inflammation throughout his Gi tract from esophagus to rectum.

Entocort won't touch the large colon for inflammation .
If I remember correctly .

The first six months to year are hard lots of learning about what to do when to call
Etc
Then you get the right med ( for some that's biologics and that's honestly ok - not as scary as some make them out Tylenol is scarier if your read the side effects ( death liver failure etc)

Take it day by day and don't be stuck to one med
Change if needed
We have all btdt too many times

 

[Mr chicken]

Chronic granulomatous disease is a rare inherited disorder of the innate immune system. In patients with a clinical history of recurrent or persistent infections, especially infections caused by uncommon species, chronic granulomatous disease should be considered.

Case presentation
We report the case of a 5-year-old boy with a presumptive diagnosis of Crohn’s disease with extraintestinal manifestations. Chronic granulomatous disease was suspected in this case after Serratia marcescens was isolated from a skin ulcer culture. Granulomas were confirmed on histology and chronic granulomatous disease was diagnosed.

Conclusion
This case emphasizes the importance of high clinical suspicion of an alternative diagnosis of immune deficiency in patients with presumed inflammatory bowel disease and opportunistic infections, especially when disease occurs in early life.

Chronic granulomatous disease mimicking early-onset Crohn’s disease with cutaneous manifestations

From
http://www.biomedcentral.com/1471-2431/14/156

 

[Mr chicken]

http://www.sciencedirect.com/science/article/pii/S0016508514009196

Although it is generally accepted that many patients with VEOIBD have low response rates to conventional anti-inflammatory and immunomodulatory therapy, there is a paucity of well-designed studies to support this hypothesis. Infantile (and toddler) onset of IBD was highlighted in the Pediatric Paris classification because of higher rates of affected first-degree family relatives, indicating an increased genetic component, severe disease course, and high rate of resistance to immunosuppressive treatment.13 Features of autoimmunity with dominant lymphoid cell infiltration are frequently found in infants and toddlers.17 Such patients are likely to have pancolitis; subgroups of patients develop severely ulcerating perianal disease, and there is a high rate of resistance to conventional therapy, a high rate of first-degree relatives with IBD, and increased lethality.4, 5, 6, 7 and 8 Recent guidelines and consensus approaches on the diagnosis and management of IBD18 and 19 highlight that children with infantile onset of IBD have a particular high risk of an underlying primary immunodeficiency. An extreme early subgroup, neonatal IBD, has been described with manifestations during the first 27 days of life.4, 5 and 8

Guidelines on the diagnosis and classification of IBD in pediatric patients13, 18, 19, 20 and 21 have addressed the need to recognize monogenic disorders and immunodeficiencies in particular, because these require a different treatment strategy than conventional IBD. Current guidelines do not, however, cover the spectrum of these rare subgroups of monogenic IBD. The identification of an underlying genetic defect is indeed challenging, owing to the orphan nature of these diseases, the wide phenotypic spectrum of disorders, and the limited information available on most genetic defects. This review and practice guide provides a comprehensive summary of the monogenic causes of IBD-like intestinal inflammation and a conceptual framework for the diagnostic evaluation of patients with suspected monogenic IBD. We categorize known genetic defects into functional subgroups and discuss key intestinal and extraintestinal findings. Based on the enrichment of known causative mutations as well as extreme phenotypes in very young children, we have focused on a practical approach to detect monogenic disorders in patients with VEOIBD and infantile IBD in particular. Because there is only modest biological evidence to support age-specific categorization of IBD above infantile IBD and within the EOIBD subgroup, we also discuss disease- and gene-specific ages of onset of intestinal inflammation (Figure 1).

The Diagnostic Approach to Monogenic Very Early Onset Inflammatory Bowel Disease
Holm H. UhligTobias SchwerdSibylle KoletzkoNeil ShahJochen KammermeierAbdul ElkadriJodie OuahedDavid C. WilsonSimon P. Travisfor theCOLORS in IBD Study Group and NEOPICS
Show more

 

[Chris_k]

Thank you for the helpful responses. I have never heard of granulomatous disease and I thought I had heard it all. I don't know if we can do the formulas. My son has a major problem with dairy--that is when it all began. He is suspected to have cerebral folate deficiency. Dairy will block folate absorption even more. He also has a dozen other problems--asthma, kidneys, chronic Lyme disease, mild autism. He doesn't have the frequent diarrhea that I thought goes with Crohn's and UC. The Entocort and Pentasa honestly had a huge effect on him the first week--is it common to have a good effect from treatment and then lose all progress for no reason?

 

[Mr chicken]

Neocate elevate and e028 splash are amino acid based - no intact proteins so milk free
Expensive but durable medical equipment clause should cover it
Peptamen jr is semi elemental so lactose free

Also there is bright beginning ( can find it at the grocery store ) which is soy based formula

 

[Mr chicken]

Ds is severely constipated with his crohns
So are a lot of kids
Very little blood ever

Ds has lots of other issues as well including kidney asthma allergies arthritis etc..,
Just harder to juggle

 

[Mr chicken]

Paging farmwife
You could do an mg tube to pump in the nutrition

 

[CrohnsKidMom]

Welcome to the forum, Chris, but sorry to hear about your son. So worrying, I'm sure. Where is your son's CD located? Or is it throughout his whole digestive system? If the disease is in the small intestine, you may find constipation is more an issue than diarrhea. Conversely, the Pentasa and Entocort would treat the disease of the large intestine more effectively. I hope you get a treatment plan in place that really works for your son and get him feeling better soon. Take care.

 

[Chris_k]

Inflammation is throughout the entire GI tract but severe throughout the colon.

 

[Catherine]

Welcome to the forum. Sorry you had to find us.

What country are you in?

 

[Chris_k]

What are the tests for CGD?
We live in Singapore.

 

[Farmwife]

Hi and welcome.:rosette2:
My girl is 6 now but was dx at 3.
She's a beautiful handful ( I know you understand:ybiggrin.

We have a member (mother) in Singapore...for the life of me I forget her name.
Does anyone remember????

Also I'll tag in Pilgrim
She has a young one too.

I'm so sorry to hear about the illness.
My girl has multiple dx's also, asthma, arthritis, allergies (food and seasonal), bladder, eczema and lets not forget IBD.:yfrown:
Our young ones are a complicated mystery to most docs.

I second the EEN/formula. My Grace also have food allergies but the formulas that Mr Chicken suggested were/are safe for my Grace and others like her.
She also wouldn't/couldn't drink enough (she has mobility issues as well).
They put in an n-g tube thru the nose and down the stomach. It worked well and we were able to control the amount for formula she received. It also help give her gut rest and in return helped it start to heal.:thumleft:
Now she has a g-tube surgically place in her abdominal wall to her belly to receive her formula. We love it!!!

Please ask as many questions as you like and know were all here to help and give hugs!

 

[Farmwife]

Jane and Nick I believe are in Singapore? This will tag them for us.

 

[Catherine]

Jane and Nick are in Malaysia but I believe their specialist is in Singpore.

 

[Chris_k]

Thanks so much. I am glad I found this forum. I am sure my guy will not drink the EEN. He will only drink water and can detect even the slightest drop of anything I try to add to the water. When you did the NG tube, was that only in-patient?

 

[Mr chicken]

The GI can place the ng tube down his nose into his belly out patient
A home health nurse can visit and make sure things are ok

 

[pdx]

My daughter also didn't grow for a long time, and wasn't eating much at the time of diagnosis due to pain after eating. We were very reluctant to try NG-tube feeding when our GI first suggested it, but when we finally did it, it was much easier than we had anticipated, and it really worked well for her. E was so malnourished that she had to be inpatient for 3 days when the tube was placed, so the doctors could check for something called refeeding syndrome as nutrition was introduced. Most kids don't need this, though, and tube placement can be done outpatient.

My daughter has a lot of sensory issues, and so we used Atavan and a little nitrous oxide as the tube was placed, and the tube placement was quick and pretty easy for her. The first 2 days the tube was in were extremely hard; she felt like she was choking and had a bad sore throat. After that, though, she hardly noticed it was in. We had to switch to a new type of formula after the first week, because she was getting some cramping and nausea with the first kind, and we also had to slow down the flow rate until she was comfortable. But once we figured it out, it was pretty easy. She gained 15 pounds in 8 weeks.

Most kids can use a high enough flow rate to get all their calories overnight, so that they don't have to be connected to the pump during the day. The tube stays in, taped to your cheek, and you just tuck the end behind your ear. (A lot of older kids will even take the tube completely out each morning, and put it back in themselves each night, but at five, your son is probably too young for that.) E needed to have her pump running most of the day because she used a low flow rate, so she just pushed her IV pole around the house with her. We were home schooling at the time, so it wasn't a big deal.

After the first 8 weeks, my daughter continued with supplemental EN for several more months, and at that point she did learn to put in the tube herself at night, and then take out the tube in the morning. She would get about 1200 calories each night, and eat normally during the day, and that helped her to gain another 6 pounds.

Now that my daughter is finally responding to her treatment (Remicade and methotrexate), her appetite is back, and she doesn't have pain when eating any more.

Good luck with everything. If you do decide to try an NG-tube, make sure that they use a small one (6-fr is the size most use).

 

[Chris_k]

Thank you pdx for this helpful explanation. My son was supposed to begin international school in August but if we have to do an Ng tube, we should probably postpone.

Has anyone had any success with an Autoimmune Paleo diet? We have been doing it for months with no
Improvement, I am wondering maybe I am not
Doing it right.

 

[Chris_k]

Also has anyone used antibiotics to treat Crohn's? I really worry about the steroids and anti inflammatories long term. I have noticed that when my son takes clarithromycin or ampicillin, his symptoms go away and he has formed stools and good appetite. But all our docs won't let us use antibiotics for more than a few weeks.

 

[upsetmom]

My daughter's used Flagyl which is an antibiotic many times but symptoms return not long after stopping. The longest shes been on it was 6 weeks.

 

[Mr chicken]

Crohns is life long the side effects of un treated of under treated disease if far worse .
Strictures fistulas abscesses scar tissues obstruction and cancer of the bowel.
Once there is scar tissue they can only remove it which is ok for the large bowel - you can live with an ostomy bag but the small bowel is required for nutrition
Once parts of it are removed short gut syndrome can follow .

Typically kindergarten kids are very accepting even with an ng tube
It's very important to keep things as normal as possible since this is a life long disease and they need to learn how to cope and move on with life
It's harder on us
They adapt quickly

Look at the partial enteral nutrition with exclusive crohns diet .
Only 50% formula and the rest from a limited food list
It works
But your going to need meds
Regular abx will stop working and put him at high risk for c diff

 

[HelenMelb]

We have used antibiotics with very good effect. They don't work for everyone but they did in our case and we are very grateful for that.

We have been using them continuously for over two years now- our doctor is a professor of gastroenterology and was on the team that developed Remicade, the first biologic for Crohn's. He was more than happy to prescribe antibiotics long term. We use a combination of Flagyl and Cipro.

Wishing you and your boy much better days ahead.

 

[pdx]

I wouldn't hold off on school because of an NG tube. When it's not attached to the pump, you hardly notice it, and other kindergarteners won't think twice about it once you explain what it's for.

We didn't try the AIP diet, but we did try the SCD diet for about a month right after E's diagnosis, while waiting for Remicade to kick in. It did relieve her abdominal symptoms, but her blood inflammation markers stayed sky high, and she lost even more weight. We started the NG tube after that month.

 

[Farmwife]

Yes, I second the n-g tube was harder for me to take then her.
Kids would ask but Grace (who's NOT shy) said this is how she eats and she's fine with it.
Again it was harder on us.
By the time she was dx she had completely stopped eating and was just happy to have it piped in and me not begging her to eat like a crazy mom.

 

[Chris_k]

Breaks my heart what these poor kids go through.

 

[vtfamily]

Hi Chris.
My son began to show "signs" around 4 yrs old. Then in kindergarten, even his teachers noticed he wasn't eating and the malabsorption had really taken a huge toll. He dropped from 90th percentile for height and 50th percentile for weight to below the 5th percentile for both. It took about a year to reach a diagnosis (he was 6 yrs old). He was difficult to dx because his symptoms were atypical (he was extremely constipated, no diarrhea). It has been a long and difficult road. Gus is 15 yrs old now and doing GREAT! Take heart, there is hope!!

We started with the same meds you are on now. I think one huge advantage you have is that your docs can see where his inflammation is located. Gus' inflammation and strictures are usually located in remote sections of the small bowel that cannot be reached by scope.

It is very hard on the mama when the kids are so young at diagnosis. However, in some ways, I think it is easier on younger kids because as they grow and mature it is just a "normal" part of their life and they learn to forge ahead and enjoy life with a unique kind of inner strength. Older kids have a tougher time because they know what their life, activities and friends were like "before." They tend to resent they ways the disease impacts their life.

Early on, I read a book called "The Foul Bowel" by John Bradley. It is not a "how to" book on Crohn's. It is a mostly humorous account of his 30 years living with the disease. What I appreciated about it as a parent, was that it helped me understand that a full and normal life were absolutely possible for my child. His journey has been filled with peaks and valleys, but he remained focused on maintaining normalcy (as much as was possible) throughout. I especially appreciated his thoughtful and realistic approach to pursuing a career. I know that seems a long way off now, but trust me, it won't be long before you will find yourself wondering, "where and how will my child be able to earn a living with all of this going on in his life." Here is a link to the website: http://foulbowel.com/17112/index.html. I highly recommend reading it.

Best of luck to you and your son.
Cheryl VT

 

[Chris_k]

Thanks so much, Cheryl! I very much need some encouragement and hope that he will be able to thrive in adulthood.