Think my 6 year old has Crohn's

[gigi0902]

I guess the best way to start is to explain why I think my son has Crohn's.

It started around September of 2012 (when he was 4) with horrible stomach cramps so bad he would be curled up in a ball crying, diarrhea all day and night long and throwing up. He would be sick one day, seem fine the next, it was just this cycle that went on like that for weeks, then all of a sudden it would stop. A few weeks to months would go by with no problems and then everything would start back up again. I kept taking him in to see his pedi and the dr. claimed it was a nervous stomach (he had just started preppy K) and things would itself out eventually. Well, that never happened. We went back in again and he said to eliminate dairy...didn't help. School started back up in August of 2013 and by December I had to meet with the school district to have a meeting regarding how much school he had missed, sign a contract saying if he missed anymore school, it had to be with a doctors note or I would be getting a visit from the Sheriff and CPS. The tummy problems would come on and I would have to take him to school, let his teacher see how sick he was, she would mark him as present, then I could walk him to the office to sign him out of school to avoid being in violation of the contract.

He seemed to be doing well from January until about a week/week and a half ago. The usual....stomach cramps so bad he is curled up in a ball crying, diarrhea and the throwing up. We've been sleeping downstairs in the living room so I can help him make it to the potty in time, make sure he has a bucket next to him to throw up in, rub his back while he cries, etc. I'm exhausted, he is exhausted and my heart is breaking for him. I know deep down that this isn't normal, but I feel like my son's pedi is giving me the brush off every time we come in for these problems, so I've been doing a bit of research. Granted he may not have Crohn's, but the symptoms seem to match up and I feel that it's at least a starting point and we can go forward from there.

My question is this.....what can I say to my son's pedi to request the test needed to find out if he suffers from Crohn's? Where do I start? What can I do in the mean time here at home to help him out....his poor bottom is so red and raw from wiping so much that he cries when he has to use the bathroom or needs to sit down. We're supposed to go to Disneyland tomorrow before our passes are blacked out for the summer, but he won't be able to go and he is so upset about that. :frown:

 

[Sascot]

Your poor boy! It is so hard to see them like that. It did take me a year and a half of back and forward to the doctor with my son - they assumed stomach migraines or ibs or nervous stomach (got the "is he being bullied at school or is he unhappy at home").
A good test to start with is a faecal calprotectin. They send away a poo sample and measure for levels of inflammation. It is the only test that ever showed anything with my son - levels were really high. At least it is a simple test to do. Start keeping a pain and symptom diary that you can show a doctor so they can see how many bathroom trips, vomiting, etc. I don't know if it helps but you could take a video of what he's like when really bad.
There is no real definitive blood test for Crohn's but it could check for inflammation, infection, anaemia, etc. he definitely needs seen by a GI rather than a paediatrician. Good luck, hope someone listens and helps soon

 

[Clash]

If your insurance requires referrals then at the next peds. appointment I would ask for a referral to a pediatric GI. I would also ask in the meantime that the ped. can run a fecal calprotectin stool test, also lab work that includes CRP and a check on iron levels and vitamin levels(B, D, and so on).

If your insurance doesn't require referrals then I would find a Ped. GI and make an appointment.


None of the tests I listed will prove IBD or Crohns but they will give some idea as to abnormalities that may be occurring. The fecal calprotectin tests for inflammation in the bowels only so it can give you a piece of the puzzle that can prove or disprove more invasive tests are warranted.

Good luck.

 

[Brian'sMom]

Our pediatrician referred us to a ped GI. They started with labs- blood draw and a stool sample. (At the time they didn't have the fecal calprotectin test and they tested for "gut type bugs"). They tested him also for Celiac disease. When labs looked suspicious they ordered a colonoscopy. I bet your pediatrician could order the labs... and then refer you if necessary to a GI.

Sorry to hear your little one is having so much trouble. Good thing you are on top of it. And as for your school district... I bet your pediatrician can help you with that too. If he ends up having crohns or celiac.. then you can get a 504 to get the school off your back. You don't need that added stress!!

 

[Maya142]

A symptom diary is a great idea-- how many times he throws up, goes to bathroom, has stomach pain etc. to show the pediatrician. If you have some evidence of how bad it is, it'll be harder for him/her to brush you off.
Also, just to make him a little more comfortable -- is he using flushable wipes (or any wipes really) instead of toilet paper? They help my daughter avoid a sore bottom when she's going to the bathroom a lot.
Sorry to hear your son is suffering so much. I hope the doctor listens!

 

[CrohnsKidMom]

Your poor boy! Yes, these could be symptoms of Crohn's, but a number of other things too. Like the others have said, a stool sample and bloodwork is a good place to start. A scope and biopsies is what will generally confirm the dx, but there are other tests that can be done to add pieces to the puzzle. I second keeping a diary of his symptoms. It's harder for a dr to give you the brush-off if it's all recorded.
My son was dx'd last yr at age 8, and he had a very sore bottom when he was flaring too. After a BM, while still seated on the toliet, I would use a bottle filled with warm water to pour over his bottom. Then we'd gently dab with wipes for sensitive skin. A good coating of zinc oxide cream afterward would help.
I hope you get the medial attention you need and your son starts feeling better soon.

 

[my little penguin]

Ok so here is the problem
We are parents of kids with Ibd
So we all have Ibd colored glasses so to speak
If you were to post on a forum if parents with food allergies or eosinphillic disorders they would see red flags as well.

The best thing you can do is get a referral or call for an appt with a pediatric GI.
Many things in GI land over lap and having a pediatric Gi help you figure it out would be a good thing.

Many pediatricians are trained to see the common kiddie diseases so stomachs etc 9 times out of 10 are nothing .

Our past ped told us DS was just a skinny kid and the constant rectal prolapse meant nothing .
After one appt with DS ped Gi we knew something was not right .


It may or may not be crohn's - DS has had a lot of other diseases fit well by symptoms on paper just not test .


Good luck
Top peduatric gi places in the us
Are
Children's of philidelphia
Boston children
Cincinnati children's

 

[Lady Organic]

im sorry to read the story of your boy. In the meantime of getting a GI appointment or further test, you could also keep a food diary of what your son eats and see if moments of discomfort comes after specific foods. sending you my support

 

[Patricia56]

I'd change pediatricians frankly but that may not be an option for you. When you make an appointment with the pediatrician ask the scheduler for extra time for the appointment. If the scheduler won't do it then ask to speak to the doctor's assistant or the advice nurse. Do not take NO for an answer. Explain that you really need time to discuss this problem without being rushed. Take him in as soon as possible if his bottom is inflamed now so the peds can see it for himself.

Keeping a diary is important documentation that will increase your credibility and give the doctor something concrete to work with.

Is he growing? Staying on the growth curve is an important measure of nutritional stability. If he is staying on the growth curve that may be one reason the peds is dismissing your concerns. You should start tracking his weight and height yourself by writing down and keeping the results from the doctor's office. When you're at the pediatrician's make them do his weight and height every time. Make sure they take his height correctly so it is accurate. If necessary, make them do it over if you see them being sloppy. Done it myself and I do not regret it. A lot of medical decisions are made based on that information.

I think it is reasonable for you to ask the peds to run stool cultures to rule out c. diff and other pathogens. This should have been done a long time ago and sounds like it has not.

Running basic labs is also appropriate when there are long-standing GI issues. A CBC with differential to check blood counts and look for anemia and infection, CrP & ESR to check for inflammation, Iron and/or Ferritin to help look for anemia, Chem Panel to check his electrolytes.

I would not expect a pediatrician to be willing to order a fecal calprotectin test. This should really be done by the GI if it's a test that they use. Our GI doesn't use it - says the results are not always consistent with disease state. But many other GI's do use it.

The key is that you want a referral to a PEDIATRIC GI - not an adult GI. If you cannot get your pediatrician to run basic labs like these and refer you given the long standing nature of the problem then it is time to change pediatricians - that day.

You didn't indicate where you live so we can't give you any suggestions for good GI clinics near you. If you'd like that advice, post your general location.

 

[DanceMom]

Our first and second Pedi dismissed all my concerns as well. I was told, "It is just toddler diarrhea" or "She just has a sensitive stomach." I finally got brave enough to demand blood tests and stool tests be done. I was still quite naive and didn't know which specific ones to request but the Pedi reluctantly agreed. I was later told everything was "normal" and I didn't know where to go from there. When I finally switched to a third Pedi I requested a copy of her labs. Only then did I see that they were not normal as I'd been told. Her albumin was extremely low, as were her WBCs. Her eosinophils were extremely high.

My point in telling you this is to tell you to always get copies of lab results, pathology reports, etc. Sometimes doctors are more concerned about being right than the welfare of the child.

 

[Johnnysmom]

Our Pediatrician took two years to take us seriously with our son's health issues. We finally got a referral to an endocrinologist because he was losing weight and stopped growing. We had the same experience as MLP, the specialist knew immediately something was very wrong. Ask for a referral to a pediatric GI. I became a real pain to my son's pediatrician after a while. It got to the point that I would call when ever he got sick and haul him in to the office. In hindsight I realize it is one of the ways your son's Dr. will know it's time to take the next step.

My son's health also had periods of ups and downs. In fact I almost canceled his appointment with the Endocrinologist because by the time the appointment came around he was feeling much better. Keep your appointment no matter how well your son ends up feeling.

((((Hugs)))))) and let us know how he is doing

 

[gigi0902]

Thank you everyone for you replies, we have an appointment for him today at 1pm (we are in Southern California).

I have written down the last weeks events to the best of my knowledge, am now keeping a food journal for him and a calendar to keep track of when he is sick and how many times each day so his doctor can get a clear picture of how much this is affecting him and how often it's happening.

We live in a small town and this is the only pediatrician covered by our insurance and unless I can't change doctors until open enrollment, unfortunately. I've written down what everyone has suggested and was able to secure an extended appointment today to be able to cover everything without feeling rushed (thank you Patricia56).

Fingers crossed we are able to get somewhere today, thank you all for your advice.

(I also realize this could be a million other things, but at least I have a starting to point to help figure out what is going on and go from there.)

 

[AZMOM]

I hope things went well today. I was about to add my two cents and realized your appointment was TODAY. I hope that you have a plan, an order or two or even better, a ped GI referral.

Hugs,

J.

 

[gigi0902]

I hope things went well today. I was about to add my two cents and realized your appointment was TODAY. I hope that you have a plan, an order or two or even better, a ped GI referral.

Hugs,

J.

We got a ped GI referral! I should be getting a call soon so I can make the appt. The doctor also gave me an rx for Phenergan for when he starts throwing up, but I didn't fill it. It's such a strong medication and to be honest, when ds starts throwing up, it's not that bad to warrant the meds. In the past two weeks, he has thrown up a total of 5 times.

 

[my little penguin]

5 times is a lot to throw up in two weeks .
Our Gi was concerned prior to dx when DS was throwing up every other week at age 7.

The meds are strong but if its crohn's then the meds for that are stronger.
For DS zofran stopped the repetitive vomitting.
If he was extremely nauseous we gave it and he didn't start vomiting or vomit repeatly during the same day .

Glad you got the referral

 

[Sascot]

That's good you got the referral. Hope it doesn't take long

 

[Mehita]

I agree with MLP... that is a lot of vomiting. We were given Zofran as well for nausea and vomiting. We'd give it to him when nausea hit or after the first vomit and it helped calm things down. Be sure to keep him hydrated. I'm not generally a big fan of Gatorade for kids, but it has done wonders for my son when he's gone through the vomiting spells.

So glad you got a referral!

 

[AZMOM]

If it's a single vomit (like Claire used to do in the middle of the meal and then finish eating), I don't blame you for waiting on the phenergan.

BUT if it's nausea, bouts of vomiting and misery, give that baby the phenergan and let him (and you) get some sleep. If you don't like the "sleepy" part of phenergan, give him a shout back and ask for zofran! It doesn't have the knockout effect.

Hugs and YAY for the Ped GI referral.....that's what you need!

J.

 

[Brian'sMom]

When my son vomits a lot it is due to cramping and pain not nausea. Then it gets in his head and he fears vomiting. Then we are in a vicious cycle.

 

[gigi0902]

If it's a single vomit (like Claire used to do in the middle of the meal and then finish eating), I don't blame you for waiting on the phenergan.

BUT if it's nausea, bouts of vomiting and misery, give that baby the phenergan and let him (and you) get some sleep. If you don't like the "sleepy" part of phenergan, give him a shout back and ask for zofran! It doesn't have the knockout effect.

Hugs and YAY for the Ped GI referral.....that's what you need!

J.

That's pretty much exactly what it is. He will randomly just throw up and be fine afterwards, no nausea or continuing to throw up afterwards.

Thanks everyone for all the help and advice :hug:

 

[gigi0902]

When my son vomits a lot it is due to cramping and pain not nausea. Then it gets in his head and he fears vomiting. Then we are in a vicious cycle.

YES!! He doesn't has nausea, just cramping.

 

[Jenr1016]

That what was happening with my son when he got diagnosed. He was throwing up on and off for over two weeks. It was just random he would throw up and then be fine. He was probably throwing up daily. The dr put him on Flagyl and probiotic and the vomiting stopped. However, they did bloodwork, which started the dx of Crohns. He had the PANCA/ANCA testing done with came back positive for Crohns. He then had a colonoscopy, endoscopy and upper GI which came back totally normal. The dr didn't stop there bc of his symptoms and bloodwork and did the Pill Cam. That is when they found crohns. I am so thankful for a thorough dr.