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My 8 year old boy diagnosed with Crohn's recently. Suggestions and help needed.

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Crohn's Disease
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Posted 7/4/2015 10:42 PM (GMT 0)
Hi,
Sorry to hear about your son. I feel your pain . Sharing few things I learned from my daughter's UC journey.

We too from India settled in US. It's very important to educate yourself about all possible treatments. Allopathic and alternative. Sometimes meds alone won't work. We have to incorporate supplements, lifestyle changes and food restrictions to get into remission.

For many, switching to organic foods helps as the colon being inflamed .Any addictives and waxes in vegetables can keep the inflammation going.

Eliminate all store (Indian)brought spices- as it all contains dyes which irritates the already bleeding colon. Adopt the old Indian way of home made powders. Also do not use packaged coconut or packaged vegetables. Use fresh ones.

Most of the vegetables including organic has some amount of pesticides or things of that kind sprayed. So soak- wash- resoak and rewash it in salt water or vinegar added at least for 30 min. If u don't believe try smelling the soaked water of tomatoes or green beans or any other.

Being vegetarian it will be hard for your son to adopt Scd diet. But it's very important to supply protien for healing. Try egg if u can . Also in the UC forum there is one named Kamakya (south Indian)who is also vegetarian did scd ( if I believe correctly)for his 9 yr old daughter. Try to reach out to him.

Milk go with organic
Replace the lentils with masoor dal soaked at least for 6 hrs for easy digestion

Supplementing oral iron can create more mess as the bacterial balance is already gone . Ask GI for iron infusion which improves the healing and health quickly.The reason for his stomach pain could be oral iron.

Like many said check into LDN and also fecal transplant- though I am not sure how effective it's for Chron's

Then there is spinach sunflower seed diet which helped some with UC.

I would do everything possible to avoid stronger meds as he being young.

Best wishes
Posted 7/4/2015 11:11 PM (GMT 0)
about pred. It depends on the dose. Sometimes 20 mg doesn't help but 40 mg does. Immunity seems to go up as time goes on. Not everyone responds to every drug. Often we have to experiment and see which works and which doesn't.
Posted 7/5/2015 9:49 PM (GMT 0)
Thanks cdinhyd for your opinion. In fact, we were also thinking of going to India this year for 3 months to see any improvements. But, with his current condition it's tough to travel. So, we are thinking of going in December. Hopefully, he would be better by then. Fingers crossed..

Bloom93, thanks for your detailed post. I was kind of lost with what to give for him. Did you put cumin and mustard seeds tempering for the food? I mostly make my own spice powders. However, I used and still use frozen coconut extensively. Will stop it immediately. Also, thank you for giving me a pointer about Kamakya. Will look at his posts and try to contact him to learn about how he adapted SCD for his daughter.

Now that I have tapered him to 5mg prednisone, his symptoms are kind of coming back. I'm calling his doctor tomorrow and will update it here.
Posted 7/5/2015 10:33 PM (GMT 0)
Yes I used finely powdered cumin and mustard for seasonings.

I strongly recommend to stop oral iron. For many it causes the stomach pain.

Just sharing.. DD's GI said to us- if flare is not calmed in prednisone chances r it could be c. Diff acting up. Ask his GI to check for c.diff. However it's very hard to get a c.diff positive result in one test alone.
Posted 7/17/2015 5:19 PM (GMT 0)
I'm so sorry to hear of your son's diagnosis. My son was diagnosed at 8 and is now 24. We have been through a lot. Find the best pediatric GI doctor you can. Read and research and ask questions. Be your son's advocate in school and at the doctor's office. Crohn's is a strange disease and there is no "one way" that fits all people in regard to treatment and meds.
Personally I believe in aggressive treatment. I found that by avoiding the aggressive treatments to put my son in remission his bowels were very compromised and he suffered greatly.
Here's an interesting article:

What is the Optimal Therapy for Crohn's Disease: Step-up or Top-down?
http://www.medscape.com/viewarticle/721058_1

Our pediatric GI doc followed the "Step-up" doctrine.
If I had it to do over again I would have let the doctors treat him more aggressively. However, my son has Refractory Crohn's and falls in the top 5% of severity. We consulted at Mayo Clinic and he has been followed there for years.

Good luck,
Diane
Posted 7/21/2015 3:04 AM (GMT 0)
Thanks Bloom93 for your suggestion. In fact the doctor has done the cdiff test couple of times already? I can ask him to test for cdiff again.

Thanks Diane. The doctor is thinking of Remicade for him.

Getting an appointment in University of Michigan is such a hard thing. Finally we got it for the first week of September. However, the doctor whom I was considering isn't accepting new patients.

We are meeting up with his doctor this week. I spoke to him over the phone and he's suggesting Remicade. I gave him options such as enteral nutrition and 6mp. He said enteral nutrition is followed mainly in Britain and he doesn't use it for his patients. He said, it's very hard to be on enteral nutrition.
I asked him for 6mp, he's telling 6mp takes time to kick in.

Will keep you guys posted with my son's progress.
Posted 7/21/2015 9:34 AM (GMT 0)
I'm on a similar drug as 6mp and yes it took about 3 months to kick in but I'm in remission now and couldn't do any better. Normally you are on pred while starting 6mp/azathioprine and while you taper pred you increase 6mp/aza until it's effective and you can slowly taper pred off.
Posted 9/3/2015 6:00 AM (GMT 0)
My son's fecal calprotectin is 920. It's too high and our doctor is strongly considering Remicade. However, we are still thinking. I don't want to jump to Remicade. Somehow, my instinct is suggesting Imuran. (I know it sounds silly, but...I hope..you get my point). Doctor has told us to take the decision in a week's time. Meantime, we are going for the second opinion tomorrow at UofM.

I was considering the following options. Need your inputs..

1. To start entocort(budesonide) along with Imuran. As I understand entocort has less side effects and until Imuran kicks in, entocort can help control inflammation. One concern is, his crohn's is only in colon and I understand that entocort works mostly in Ileum (As told by my doctor). Has anyone with Crohn's Colitis have taken entocort? If not entocort, I dont mind him taking prednisone for a short time (until Imuran kicks in)

2. Follow elemental nutrition along with Imuran.

3. Try LDN. Is LDN given for kids? I have not much info about it.

4. Did anyone try fecal transplant for your kids? Can that be an option too?

5. Take Cipro along with Flagyl and Imuran (until Imuran kicks in). Our doctor rejected Cipro. According to our doctor, our son is too young to take Cipro.

Meantime, my doctor tested him for C-diff again and it's negative. He is slowly reducing weight and his stools are tarry. Does tarry stool mean there's blood in the stool?

I know too many questions. Thanks all for your time and the valuable inputs.

Current medications: 1000g Canasa(at night) 500mg Pentasa 2x a day, 1000 IUD Vitamin D3, 325mg Ferrous sulphate, Flagyl 250mg 2x a day, Prilosec (20mg)

Previous medications: Prednisone

Post Edited (momof8yroldboy) : 9/3/2015 12:17:12 AM (GMT-6)

Posted 9/4/2015 1:09 AM (GMT 0)
You have such a tough decision to make. I totally understand that you want to delay the jump to anti-TNF's, (Remicade), as long as possible.

You could certainly try Imuran and see if that brings him under control. Maybe one last bout of Prednisone and transition to Imuran.

If that doesn't do it, you'll have to strongly consider Remicade at that point. Remicade works for some for over 10 years. At that point, there will certainly be many new meds out there to control this disease.

As far as you other considerations, I doubt they're worthwhile, but who knows. Maybe LDN, although it doesn't get rave reviews. It is a very safe treatment option though.

Good luck, keep us posted.
Posted 9/11/2015 3:41 PM (GMT 0)
I really feel your pain, but I might have a helpful suggestion too. I have identical twin sons who both have Crohn's disease - the onset was when they were 15 yo. I firmly believe in natural cures so I started taking them to naturopaths, chiropractors, Ayurveda doctors, Japanese and Chinese acupuncture, supplements by the boatloads. But their condition continued to worsen.

We then went to a number of top Gastro doctors all tops at Johns Hopkins. They put them on increasingly strong medications that ultimately gave them so many side effects they had to stop taking them.

Acupuncture, slippery elm, aloe vera, various chinese herbs, some Ayurvedic procedures seemed to be the only things that had a positive impact UNTIL!!!!!!!!!!!!!!!!!!!!!!!-

ONE OF MY SONS CURED HIMSELF!!!

Asking him how he did it, he first told me he decided to rid ALL the stress out of his life. He would take walks, sit on a bench and do his own form of stress relief meditation. But it turned out he wasn't telling me everything. He finally told my wife that she wouldn't approve of how he did it, so they agreed not to discuss it.

But after pressing him, he told me that he was smoking marijuana whenever he felt inflammation coming on. It also helped with his stress reduction. That the marijuana was far and away what helped him most and what eventually put him in remission (or cure). Eventually he started eating everything again and Crohns just seemed to recede into sunset. He's actually eating a terrible diet now by any standard but what can you tell a 20 year old these days?

My other son is still suffering greatly from Crohns even though he's the one that's been more proactive with seeing doctors, diet, taking medications, supplements, etc. He weighed 190 lbs and now is down to 125. He looks like a skeleton. i asked him if he smoke MJ and he said he didn't like what it did to him mentally so he stopped it completely. He said his Crohn's symptoms were helped when he used it in the past, but he can't stand the mental effect. He's been battling depression as well.

I searched online and found lots of people saying the same thing that marijuana was the only thing that really helped, which some studies also seem to confirm.

Currently his acupuncture, better sleeping habits etc are helping somewhat, but if he continues wasting for much longer, I plan to move him out of state where he can have legal access to cannibis oil (which doesn't cause mental effects).

OBVIOUSLY you don't want to have your 8 year old smoking marijuana if it IS superior to other medications. However the cannibis oil can be mixed in with food or drink and doesn't cause intoxication. Some people also juiced it with also good results and that also doesn't cause any kind of high.

I spent most of their teen years harping on them against taking drugs or alcohol. But as a parent when you see how much misery this disease causes, obviously it's no time to stand on principal if something works.

As expensive as it is I'll probably be moving my one son to Colorado where he can get the medication he needs. But if it works it will be more than worth it (even if we have to live off peanut butter and crackers for awhile).

What's exciting in this whole terrible ordeal is that it looks like we may have finally found the solution. Since both sons have the same DNA, I'm encouraged to think that what worked for one is likely to work for the other.

Just food for thought, and I deeply hope you find a solution for your son as well. Take care.
Posted 10/17/2015 1:56 AM (GMT 0)
Update on my son...

We got the second opinion from the University of Michigan and the the new doctor also recommended Remicade. The new doctor verified my son's diagnosis again (She got the tissue samples from our hospital and re-confirmed the diagnosis).

We finally had to accept and my son got his first dose of Remicade this afternoon (150ml). They pre medicated him with benedryl and Tylenol. The infusion went smooth without any reactions or side effects (Thank God). I'm crossing my fingers and waiting for the magic drug to show it's magic on my son.

His second dose is 2 weeks from now and I'll keep you guys posted about it.
Thanks a lot for your suggestions. I don't feel alone anymore :)
Posted 10/17/2015 3:10 AM (GMT 0)
Fantastic!
I'm relieved to hear that he's now on Remicade.
I never realized how sick I was until I started Remicade and it made me feel amazing, like a normal person!
I hope he can stay on it forever!
Posted 12/20/2015 4:44 AM (GMT 0)
After my son's second infusion, his liver enzymes came back elevated. (In the last week of Oct). BTW, his liver numbers were normal before that.

Doctor re did the blood work in the second week of November (15th Nov). Again, his liver numbers were elevated (about 120 range is what my doc told). Now, our GI wanted us to meet the hepatologist just to keep an eye on the liver enzymes. His bilurubin is normal. His ALT and AST were elevated. He was still having a lot of symptoms, he wasn't even eating 1000 calories in a day. Couple of days later (around 17th Nov) , he started vomiting and all he could take was 1 tablet with a little water. He was hardly eating around 500 calories. The dietitian gave a prescription for 1.5 pediasure. He couldn't take that too. We were literally waiting for his 3rd infusion which was on 28th Nov.

But by 21st Nov, he was too weak and we ourselves said..we want to admit him. Our GI was on holiday( thanksgiving week)'and the nurse wasn't there too. Finally, on call GI asked us to get his stool work done. On the Thanksgiving day , we got to know... He was positive for cdiff. His infusion was postponed and he was on a 14 course of flagyl. He started feeling better after starting flagyl. I read through a lot and started florastar probiotics along with flagyl.

He is now -ve for cdiff and had his third infusion today ( Dec 19).

The first 5 mins into the infusion, he had severe flushing and red face. I rushed to the nurse and she stopped the infusion. His vitals were normal. He was premedicated with benedryl and Tylenol. They stopped the infusion until they heard back from the on call GI doctor. Later, they restarted the infusion. He did fine after though. But it was still scary.....

Meanwhile, we met the hepatologist and he has asked for repeated blood work. He told...elevated liver enzymes could be because of remicade, cdiff or autoimmune liver disease( I don't even want to think of it. Please......)

My concerns are...

1. Did any one have elevated liver enzymes when you had cdiff?
2. Is flushing common reaction of Remicade? Should I be concerned?
3. Since my son's infusion was postponed for 3 weeks, did he have a reaction to it?
4. He's not achieved remission yet. How fast or how long does it take for the Remicade to work?

BTW, after the course of antibiotics... my son's appetite is getting better.
Posted 12/20/2015 10:49 AM (GMT 0)
I'm sorry your son's having such a tough time. The only thing I can comment on is #2. These are common side effects during an infusion. Make sure he gets pre-meds before his next one. That should solve the problem.

Remicade will react differently in everyone. Some achieve results within the first 5 minutes. Others it can take some time. Not sure just how long until you have to consider other treatment options. Hopefully others will chime in on that.
Posted 12/20/2015 1:09 PM (GMT 0)
He's not taking care of your son at all. Pentasa is useless and prednisone will drain his bones of calcium and he's a growing boy. I'd be asking for a second opinion and looking into a better quality drug so your boy can enjoy a better quality of life. OMG reading your story caused the hairs to stand up on my arms, when damage is done it's done. You do not want your son with strictures from scar tissue, you don't want him going through surgery either, he's only 8! What you need is another GI who will put this boy on Remicade or Humira, then he'll feel better. Also I'm not sure of his diagnosis if his ileum is clean? It sounds like Ulcerative Colitis? Get him another referal this guy is using barbaric practices!
Posted 12/20/2015 1:29 PM (GMT 0)
And please do not try to treat crohns w food, it's not the food causing the inflammation, its the disease. Treat the disease and he'll be able to eat anything, trust me, I know! I've had Crohns for 22+ years, it was never my Mom's cooking and I didn't realize it until I got my first dose of remicade 2 years ago, it worked that fast :)
Posted 12/22/2015 9:27 PM (GMT 0)
mom, sorry to hear your son is still struggling. Had he ever been tested for c-diff before? Had he taken any antibiotics recently or been hospitalized?

Usually Remicade would be working by now, but with the c-diff on top complicating everything, it's not so surprising that the Remicade hasn't really helped yet. Hopefully once you get the c-diff eliminated, the Remicade will begin to work better.

The flushing reaction could have been due to the short delay in getting his infusion, but then again it might not be. No way to know for sure. That type of reaction does happen now and then - not that that is very reassuring!

As for the elevated liver enzymes, keep watching them. They could be from the Remi or from the c-diff or from any number of things. My liver enzymes a few years ago went WAY up, into the 500-600-700 range, and we didn't know why. They returned to normal within a couple weeks. A low elevation in liver enzymes is not uncommon and not a huge concern, just something to watch closely.
Posted 12/29/2015 3:57 AM (GMT 0)
momof8yroldboy - I wish I could just give you a huge hug and make it all go away. As a two decade Crohn's sufferer myself and the mom of an 8 year old, I can't even imagine how horrible this has been for you.

I can only tell you my own experience and opinion to give you another potential path. It's always good to have options with this disease that keeps coming back over and over. I did almost all of the traditional meds, diets, supplements and lifestyle measures. Some worked for a time, some did nothing. Not one made much of a difference except Flagyl. Every time I would go on Flagyl I would get well, except then I would go off and relapse. After failing both Humira and Remicade, I was out of options so I took a gamble on AMAT (atypical mycobacterial antibiotic therapy). It made sense to me since I was tested for a mycobacterial commonly found in Crohns and I responded well to Flagyl.

Within 6 weeks I had gained weight and felt well. Within three months I felt like I had never had Crohn's, and have remained this way for 13 months. Dr. Chamberlin in New Mexico uses this therapy for adults and children, and there may be a practitioner in your area. Lots of resources for you to consider at TheCrohnsInfection.org. It attempts to correct one of the problems thought to be behind Crohn's, which is a combo of an opportunistic pathogen and a genetic defect in one's immune response to intracellular mycobacteria. I have used this in combo with LDN; the antibiotics to correct the pathogen issue and the LDN to correct the improper immune response. I believe much more will be published on this in 2016 that will provide further answers. I can also tell you that if my kids got sick, this is the first therapy I would try.

Wish your son health and you peace. I truly hope you find something that provides relief.

Post Edited (irishgal1) : 12/28/2015 9:01:53 PM (GMT-7)

Posted 1/5/2016 3:38 PM (GMT 0)
momof8yroldboy
I have been constantly thinking about your son and hoping that Remicade will bring him all needed relief.

My son, after his first Remicade infusion saw a huge difference and attained clinical remission. Our doctor did 2nd infusion after two weeks and a month later 3rd infusion was administered. We tried 8 weeks interval and saw some symptoms re-appear like mucus and traces of blood in stool. Now he is on 7 week interval for the Remicade. He was taking Methotraxate with Remicade which was stopped as he constantly has cold which he is not able to shake off. For last infusion, he did complaint about tightness in chest within 10 minutes of infusion, but disappeared afterwards. I don’t know much about this disease, but thought of sharing this first hand information.

I hope things will improve for your son soon. Let us hope that some kind of cure for Crohn’s will be available soon!

I am thankful to all people who update the posts with their experiences and provide guidance in various situations. This website is my gotoplace when anxiety strikes me (which is too often..).
Posted 9/28/2016 5:50 AM (GMT 0)
@momof8yroldboy: I hope your son is doing good. Are you still in US or went back to India? My 5 yr old daughter has been diagnosed with CD and we are also in the same boat as you have described in your post. Appreciate your response.
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