Living in Malaysia, British family, my 11 year old is newly diagnosed. Need to compare treatments, feeling a little desperate.

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Jane and Nick

Jane and Nick

Joined
Apr 26, 2013
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Hello, my son is 11 and had been suffering from bloody diarrhoea for a couple of weeks, no pain, no cramping, no other symptoms. I took him to see a paediatrician at our local hospital and she referred us to a GI, who preformed endoscope and gastroscope and found inflammation and ulcers. She took biopsies and sent to pathology, they came back inconclusive so she sent to another lab, she called last week to say the diagnosis was Crohn's and left a script for me to pick up. She put him on salofalk (mesalazine)500mg 2 tabs 2 times a day and prednisolone 5mg 6 times a day. He was doing well and his blood had stopped and bm's down to one or two and not diarrhoea, we were pleased. How ever I stupidly miss read the mesalazine and was only giving him 2 tabs, realised my mistake two days ago and have upped the dose. Since upping to the prescribed dose his diarrhoea has got much worse, he is in pain from cramping and this evening has been 9 times still no blood but feels really yucky. There are no paediatric GI's at the hospital and I am worried if this is the correct regime. Being in a foreign country and dealing with this is overwhelming. My husband is also fighting cancer so feeling particularly desperate. Seeing the doctor tomorrow morning. Any advise would be wonderful.
 
I don't have any advice but I did want to say I'm so very sorry for all you and your family are dealing with.

Hope you get some answers at your appointment.
 
My son has not used Salofalk but here is a thread where some members discuss the side effects of it:

http://www.crohnsforum.com/showthread.php?t=36539

Also, has he started tapering his prednisone yet? When some people start to taper their symptoms return. This is because steroids only knock down the inflammation and aren't great at keeping it at bay.

If he is tapering the pred it may be that the salofalk isn't strong enough to keep him headed in the right direction. I would definitely call the GI and go over all of his symptoms.
 
My son was diagnosed at 11 years old in October of 2011. He was immediately put on 40mg of prednisone daily. And then a week later started 6mp. (50mg dose)

The mesalazine is a 5 ASA drug and is the very mildest form of treatment. We wanted our son on it when he was diagnosed and our Dr literally told us it was like "taking aspirin for a brain tumor". I think if you are 11 at diagnosis chances are that your disease course will not be mild. Our Dr. recommended 6mp which is an immune suppressant and the next level up in strength of medication. It can take up to 3 or 4 months to work so the prednisone was started until the 6mp could kick in.

My guess is your son is reacting to the Mesalazine or that he has started to wean off the prednisone and his body is reacting. If the only change was that you upped the dose of the Mesalazine and you have not begun to taper the pred then I would think it is a reaction. Either way, I would call the GI and report symptoms. We did that a lot in the first few months after diagnosis. I would also try to find a way to get a Pediatric GI even if it is only for a 2nd opinion and one time consultation. The disease is very different in children than adults.

I am sorry if I am not answering all of your questions, I know I had a million of them when my son was first diagnosed. Please feel free to ask me anything I have missed.

I am sorry you are going through this, it is so very hard. It gets lots easier I promise!!
 
Hi Jane, I don't have any advise to offer either. But wanted to say welcome & extend my sympathies and send my best wishes. We are still trying to work out what is wrong with our 10 year old but we face some of the same issues that you do as we are in Dubai and Liam has been seeing an adult GI.
 
I'm so sorry to hear of all you are dealing with! :( It must be so much harder being away from home!

My son hasn't taken either of the meds you mention, so I have very limited knowledge about them. But, as was said above, pred is a temporary measure and many do have their symptoms return once tapering starts and salofalk is one of the 5-ASA meds - these are mild and often not enough to maintain remission.

Where is your son's crohn's located? Is the GI's plan to have him stay on only salofalk as a maintenance after he tapers the pred? I do think you need to discuss his current symptoms with his GI and an ongoing treatment plan for your son.

Please do some research on Enteral Nutrition (EN). This is a nutritional formula that is used exclusively (meaning no other food for a period of time) to induce remission. It has a comparable success rate at inducing remission as steroids. While using it exclusively, it will provide your son with all the necessary nutrition, has been shown to help in mucosal healing, has anti-inflammatory properties and has no negative side effects. It can then be continued as a supplement along with a maintenace medication.

My son did six weeks of exclusive EN and it brought him almost immediate relief. He has continued with it, as a supplement, for almost 18 months.

The formula can be ingested orally (shakes that he can drink) or through an NG tube (naso-gastric tube). My son used the tube, would insert it nightly and remove in the morning. There are different types of formulas; the more broken down, more easily absorbed formulas would be best - elemental, peptamin, and others.

You can find info on EN through the following links:

http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/forumdisplay.php?f=161

Please look through the Treatment subforum... you'll find lots of info there regarding all treatments.

Good luck!! :ghug:
 
Hey Jane,

Lots of experienced parents on this site who can share what has and hasn't worked for their kids (and adults who can tell you what has and has not worked for them)... so this is a great support group for information to take back to the GI and ask more questions.

My son also had ulcers and inflammation. Do you know where the inflammation is located? We were on a similar regiment as your son, (we actually started on a lower dose of Pentasa - which based on my limited knowledge is in the same family as salofalk). However we had a lengthy hospital stay with IV predisone, NG feedings before switching to the pills. He also never had a lot of blood in his stools.

Right now I would recommend read, read, read and post as much information as you feel comfortable sharing (the more you share, the more likely someone will read what you say and have some insight/experience to what you're going through)..

Until then... I'm so sorry to hear of your son's diagnoses and pray you husband's cancer treatments will produce remission...
 
Hi Jane

I'm sorry to hear about your son and husband...:ghug:

My daughters been on salofalk and it caused diarrhea as well. She was then put on Pentasa which wasn't helping so they recently added imuran...the imuran seem to have done the trick . This is the best she has been in over a year.

Good luck at the doctors.
 
From another forum I am a member of it members from Malaysia if they can afford go overseas for specialist appointments, i believe if my memory serves me correctly to Singapore.
 
Hi Jane,

My heart goes out to you. My 8 yr old son was just diagnosed in March, so I don't have any real advice to share yet. But maybe something I mention will help you.

My son's ulcers and inflammation are mainly in the jejunum section of his small intestine. His symptoms were fever, major night sweats, no appetite, and no energy. He did not have any diarrhea or bleeding however. Our paediatric GI gave us 2 treatment options-nasal tube feeding or Prednisone. We have chosen Prednisone. My son has been on it for 4 wks now and is doing well. His dosage is 6-5mg pills/day, taken in the AM. One week ago he started Imuran (Azathioprine), which will be his maintenance med. Dosage is 75 mg/day, taken in the evening, but we are at less than 1/2 that dose until today's bloodwork results are in. Imuran can be hard on your pancreas and liver, so no upping the dose until we know he's handling it ok. We have an appt on Monday with the GI. I expect we'll discuss decreasing the Prednisone and increasing the Imuran.

You might want to check your medical insurance. Perhaps there's a provision whereby you can recieve medical advice from a paediatric GI from England. Just a thought.

I will absolutely pray for you. Can only imagine how you are feeling. Take care!
 
I second everyone's posts above, especially about this forum. Just keep reading and you'll learn lots to take with you to your appts. For us the enteric nutrition worked well, but I heard that maybe it won't work so well if symptoms are mainly in the colon. My daughter's symptoms are mainly small bowel and just a little in the colon. The 6MP we started a month ago has finally brought her to be symptom free this week :). She's still drinking the formulas, but is eating as well now (did 8 weeks exclusive).
 
Thank you. Update from Malaysia.

It was so nice to wake up to all your replies, THANK YOU ! I feel as though I have a new family to come to and a very informed and friendly one at that.
Nick had a terrible night he was up to the toilet at least once an hour, I slept with him and tried to keep him company and give him some comfort. Around 3am we decided that we would trip out the bathroom and will put posters up get a new padded toilet seat and a stool ( no pun intended) for me to sit on. I didn't give Nick the Salofalk this morning as we had our appointment with the GI and wanted to wait. She has reduced the Salofalk down to two 500mg tabs and is starting to reduce his steroid by one tab every 5 days, she said the Salofalk is well known to cause the runs, I am quite glad I was an idiot and messed his dosage up, she also wants us to give him a break of two days and start again on Monday. She also wants to look at his small intestine and will arrange for the camera pill, at a later date. We go back in two weeks, if things go according to plan. Any way, we will see how we go and take it step by step. My husband was well enough to come to the appointment so it was lovely to have the moral support.
Thank you one again for all the support.
Jane
 
Last edited:
Thanks for the update. I hope the break gives your son a break from the toilet! I hope you both get better sleep tonight!
 
:welcome: Jane and Nick

Sorry to hear of your son's diagnosis, and your husband's illness, but glad that you have found the forum. My son is also 11. I like your idea of putting up posters in the bathroom. I read on the forum of someone who put up Where's Waldo posters in the bathroom which I thought was a great idea. I too have spent many a late night hour sitting on a stool in the bathroom keeping my son company. It is not fun. My son uses the iPad to keep himself amused while on the toilet for long periods of time. They might as well be entertained while sitting there all that time!

My son also did enteral nutrition and it helped quite a bit. When you get a chance have a look at some of the EN threads. It is a nice and safe way to get inflammation under control for some kids.

BTW I went to Malaysia years ago and have been on the search for roti canai ever since.
 
Jane, my heart goes out to you!

May I ask, with your husband fighting cancer and now this with your son, is there any chance you may be going back to England any time soon?
 
That's a very good question, I lay awake at night thinking about this, and I haven't found a good answer. To replay a little, Col and I left the UK in Jan 1993 two weeks after we were married, had a wonderful twenty years lived in Bangkok, Singapore, USA and now Malaysia. Colin. Was diagnosed with a brain tumour 11 months ago after experiencing massive personality changes, head aches and tunnel vision. The doc did not think that the tumour started in the brain so did full body MRI and found a mass in his lung. Colin is 48,never ever smoked lived a clean and healthy lifestyle and still drew the ****** card. He has had such incredible care here in KL, I truly believe on par if not better than in the UK. It helps that we have BUPA and they have been wonderful. To date Col's brain tumours are gone, his lung cancer is responding to treatment and he has had 30 radiotherapy sessions and 17 chemotherapy infusions, we will have another scan soon to determine spread or remission. Nicks Crohns diagnosis was almost like the straw that broke the camels back. It's funny how you can deal with most anything until your children are involved and I often think what did we do wrong to deserve all of this, but it doesn't matter because we will deal with it and make the most of it.
Colin's job is here, so can't just up sticks and go. So day by day, step by step.
X
 
Maybe if Colin doctor easy to talk. Ask him what pedi GI he would use for his child.

Good specialist seem to know other good specialists.
 
We are seeing Cols oncologist on Monday and will ask who he would recommend, how ever I am pretty sure there are no pediGi's in KL, our doctor today wanted to work closely with our paediatrician to get the best results, however we have only met the paediatrician one time, guess its time to build a relationship.
 
Twiggy, Rotti is delicious, it is often available at the children's school for breakfast and Its hard to resist when I am volunteering. You know you have been in Asia to long when you prefer Rotti and or noodles/rice for breaker over toast and cereal.
 
My son was diagnosed with very similar symptoms in March. He was put on steroids for 3 days through an IV, then sent home from the hospital on Flagyl (which the docs recommended he stop after just a day or 2 because it made him nauseated) Pentasa and Previcid. He was also told to go on a liquid diet of Peptamen. He has not had food for almost 5 weeks and he's put on 22 lbs, feels good and looks great. I think it's important that your child see a good pediatric gastroenterologist.
 
My son used to run to grab his ipod when heading to the loo - he said it helped him relax. Now he grabs his ipad. I told him in the "old days" they grabbed the newpaper or a magazine. He looked at me like I was crazy... laughs. Posters, stool - great ideas! I did the sleep together thing too - he said it helped him, but I think it was more for me :)
 
I have a question, the doctors new regime of cutting down on the pred by one tab to five should start today, on the script which is a sticky label on a bag, it says to give 5 tabs one time a day, is this normal to give them all in one go? I had been spacing them out to one every 3 hours as his last script said after food.
He still has diarrhoea and I am so upset for him, life sucks at the moment. His dad is unwell today too! I know it's bad, but some times when I see all those people with out a care in the world it makes me mad, especially those who abuse themselves or others and still seem perfectly happy and healthy. Sorry having a rant !
 
I think you would find that by far the majority of people take their Prednisone as a single dose and in the morning. It can have the potential to make you very hyper/whizzy and as a result some people find sleep hard to come by, hence taking it all as one dose in the mornings.

My heart goes out to you Jane...:ghug: You have so much to deal with at present that it is little wonder you feel the way you do, so please rant away! And please know we have all been there at some point and likely will be again!

Please have look at this thread...

http://www.crohnsforum.com/showthread.php?t=22520

...I hope you are able to find some comfort there knowing that you are not alone.

Dusty. xxx
 
When my son took prednisone he took it all at once in the morning with breakfast.

So sorry to hear that both your son and your husband are feeling poorly. That must be extremely hard for you. :ghug:

How long has your son been on pred for? I think that the salofalk takes about a month to become fully effective. Have you had a chance to look at the information on EN?
 
Jane

You are a superstar. I am dealing with 1 14 year old boy with Crohns but my hubby and I are well. The strain of the Crohns is hard enough. Get as much info as you can and take it a day at a time. It all seems to go ok for a day or two or even a week then bam down we go again. It is a tough illness.

This forum is a lifesaver
 
When should I be concerned ? And when should I just give things time ? Nick started on his new regime of one less prednisolone pill on Monday so 25mg instead of 30 he had been on 30 for ten days, we also reintroduced his Salofalk and all seemed to be going ok. Couple of loose stools in the morning before school, nothing at school then another one or two loose at night but no blood. Today he had a loose but better stool before school nothing at school then about 4 or 5 since he's been home very loose last one had some blood. He did have some chocolate milk but that was just a couple of hours ago, does food effect happen that fast? Just when you think things are going in the right direction. He also has a cold, at least he has no tummy ache.
Have been thinking of the liquid diet but without a pedi GI to guide us I am afraid to do that. Looking in to going to Singapore to see a doc.
Jane
 
I was told for almost a year that there wasn't a Pediatric GI in Dubai, eventually saw a different Pediatrican who knew of one in a small private clinic, he isn't on my insurance network so I had to pay upfront and hope Insurance Company will reimburse some of costs. He did all his training in UK,Ireland & Canada which I'm happy with and my impressions from the first appointment we're good.

Although going to Singapore is probably not a bad idea, I'd also make a point of continuing to ask all the health care professionals you come across if there aware of anyone with this specialty in Malaysia.

I found this link related to certification of Pediatric Gastroentrologist in Malaysia, http://knowyourbabies.blogspot.ae/2009/12/malaysian-experience.html it lists the names of all the doctors on the Malaysian Health Department committee for certification of Pediatric Gastroentrologists. I'm sure it's possible to find emails for these people via a websearch, perhaps if you email some of them, one of them might be able to tell you if there are any specialists who fit what your looking for (in terms of qualifications & experience) that you've not heard of yet.
 
Maree,
THANK YOU ! How did you find it, WOW that's great. I also just posted on the school web site they have a place where people buy and sell or share info and some body mentioned about one of the docs on your list. I will call tomorrow. Thank you again for taking the time to help!
 
Will add: not sure how the health care system works in Malaysia but here in UAE there are a set of significant sized hospital groups, that run a range of private clinics and hospitals. I've found doctors are very reluctant to refer across hospital groups (owning companies). So if the specialist you needs works elsewhere you generally won't hear about there existence unless your doctor feels completely at a loss as to how to proceed.
 
Yes, that sounds absolutely right. I have to get over my Britishness of putting each and every doctor I meet on a pedestal, I am always so grateful for the advise and want to believe everything is 100% correct and I forget that some times it's big business over here. Our local GP is already writing a prescription before you tell him what's wrong! I have to get tougher so I can help Nick. I do hope they won't want to scope him again! I have all the reports on the scopes with pictures and a cd of the scope the only thing I don't have is the blood test results. I will put my big boy pants on and call and request a copy of them.
Thank you.
 
Maree!! I had to send a hug to you!! What you did (finding that doctor's list) epitomizes the loving, giving, caring nature of this group... I would high five, fist pound, hug you if you were standing before me! WOW!! Not even for me, but just gave me chills!!

Hoot! Hoot! LOVE this group!!
 
Jane and Nick said:
When should I be concerned ? And when should I just give things time ? Nick started on his new regime of one less prednisolone pill on Monday so 25mg instead of 30 he had been on 30 for ten days, we also reintroduced his Salofalk and all seemed to be going ok. Couple of loose stools in the morning before school, nothing at school then another one or two loose at night but no blood. Today he had a loose but better stool before school nothing at school then about 4 or 5 since he's been home very loose last one had some blood.
Jane
Click to expand...

If the blood continues, I'd call the doc. I hope you find a ped. GI and build a relationship with him/her. It's such a load off to have a GI you can call on who knows your child!
 
Well just back from the emergency room, tried calling the doctor but it was a public holiday and no clinic today. Nick woke with a temp really sore throat, bad head ache and very bloody d, the primary care doc didn't know anything about Crohn's as very few Asian people get it, he said that Nick had a throat infection and prescribed antibiotics he called the GI that is treating us to make sure he could take them and she told him to tell us !!! That we could go in on Sat morning to the office if his d wasn't better. My hubby had taken a sleeping pill and was out of it due to his bad side effects, so left him at home. At least the ER was empty. Nick was a trooper and took it all in his stride. I think his steroids have kicked in now and controlling the d and panadol is helping his other symptoms. He still wants to go and see Iron Man later, hope he is well enough. Phew...feels like a full day already and it's only 9-35 am.
 
Sounds stressful, hope things continue to settle down. My kids are looking forward to seeing Iron Man as well! Hope he is well enough to go.
 
Sorry to hear what youre going through with yr family. My son was diagnosed 3 years ago at the age of 7. he was put on salofalk granules firstly for a couple of months then 6mp was introduced, he has never had a problem with diarhoea, its the other way with Kian. good luck huni. xx
 
OK, so I have been told by the Pedi GI that they only see Malaysian citizens as it is a government hospital, I am following up not sure how or who with but think they might take private patients some where else. The only other pedi GI, I have been told to avoid because he isn't recommended, that was from another ex pat. I will if all else fails make an appointment with him and decide for ourselves. I have decided to, for the time being, to stick with the GI doc at our local hospital which is 5 mins down the road she is very willing to work closely with the paediatrician at the same hospital. Nick likes both the doctors and is very comfortable talking to them and doesn't want to see a new doc, I will of course have to make him go to a new one if this doesn't work out. So what do you think ? We are going for blood tests on Thursday, which tests should I make sure they do ? From a pedi, growth point of view I was going to ask for all the vitamin levels to be done then from the GI I wanted the inflammation, should I also ask for a c diff test ? They will just take one sample from the GI office but want to be sure we get the correct tests done.
Nick is still on the 30mg pred no other med at the moment as we think the Salofalk made the d worse. He currently is down to 1 soft bm no blood which is great but I know it's just the pred and we have to start coming down and finding some other meds.
Sorry it's so long winded.
Jane
 
If the 5 ASA didn't work for him then you really need to ask the Gi what plan b is ASAP .
Most immunosuppressants ( 6-mp and Imuran) take at least 3-6 months to work so in theory you start them the same time as the pred - so when you are weaning pred the 6-mp is starting to work . If you wait then you may need to start the pred again.
6-mp can sometimes keep the inflammation from getting out of control but it typically does not reduce the inflammation ( hence the use of pred and/or EEN).

Good luck with the Gi .
 
I'm sorry the peds GI didn't work out. That's discrimination. I'm glad you like your GI and pediatrician though. I agree about needing to get on a maintenance ASAP. For J, the 6MP didn't take more than 3-4 weeks to kick in, so hopefully your son can get quick results too.
 

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