Nick update from KL, your advise please.

[Jane and Nick]

Hello friends,

During the last year I have found this site to be such a wonderful source of information and answered all my questions, but now I need your help and advise again.

It has been a year since Nick was diagnosed with CD. We have had lots of ups and downs but for the most part he has been well. He has been taking his Salofalk and vitamins and I have been quietly anxious, waiting for things to go belly up, waiting for the I told you so from my conscience that should of put him on stronger meds.

Well the s***t hit the fan and Nick has been in a flare for 3 months. Symptoms are bloody d, pain and cramping strangely always at night ? And failure to thrive less than an inch in a year and 0 weight gain.

We have been on 20mg steroids for about 3 weeks and each time we taper by just .5 we get all our symptoms back. He also takes Zantac, calcium and iron. His GI (adult) has been kind and sees us regularly but really doesn't have any experience to fall back on (we live in KL, and less than 3% of people have IBD in Asia).

We recently had a flexi sigmoidoscopy which turned in to a unexpected CT with oral, rectal and intravenous contrast.

The results were, thickening in the sigmoid colon with an area of thickening in the proximal descending colon below the splenic flexure and suggest possible colitis. No pericolic inflammation seen. The rest of the bowel loops are unremarkable. No obvious thickening seen in the small bowel.

Results for biopsy
Four fragments of colonic mucosa, of which 2 of them display moderate degree of lymphoplasmacytic infiltrates with presence of few neutrophils and eosinophilis. Neutrophils are also seen focally in the grandular epithelium, constant with focal cryptitis. However, there is no crypt abscess. Mild degree of crypt distortion and branching observed. The other 2 fragments of colonic mucosa exhibit mild chronic inflammation infiltrate. There is no granulomas, dysplasia or malignancy.
Diagnosis - colon biopsy Chronic active colitis, mild activity.

Unfortunately we have no biopsies or visual of the colon other than the CT, but I am thinking that this is where all his pain is coming from.

The doc has gone full circle from not wanting to medicate to thinking of AZA to now recommending Remicade ! She has zero experience with either meds and said that she will do the infusion in the adult day care centre and knows the protocol. Told me to go and google Remicade, which I did, and well you all know how I am feeling. Do you think from the above results his symptoms warrant Remicade ?

I have a appointment in Singapore early next month with the head of the paediatric GI unit and hope he will have more experience. I just need him to say yes this is exactly what I would do, then I will do it, but until then I am terrified to have my boy be put at risk by inexperience and all the dreadful albeit small risk of life threatening side effects.

We have to wait at least a month to start as we just had his BCG vaccine (TB) which gives us some decompression time.

Phew - sorry for the length of the post. Please give me your advise I will be SO happy to hear from you.

X


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[my little penguin]

DS was put on remicade for less.
Aza takes months to work which means more months of steriods to wait and see if it will work.
Remicade 6 weeks ( 3 infusions).
Remicade was a miracle for my son and worth all the worry I had when I got my child back .
He grew he gained weight
But most importantly the bathroom was not his life nor was pain every day.
The thing with Ibd meds are there risks - yes
But finding a med that works makes you forget the risks and enjoy life again.
DS has been on biologics first remicade and now humira due to a mild allergic reaction.
The change is so different from 6-mp or Mtx .


Big hugs

 

[kimmidwife]

I would advise not doing remicade in an adult center. I would be worried that they don't have the experience needed to handle a pediatric patient. Waiting until you see the pediatric specialist in Singapore sounds like the best plan. There is no question that his symptoms warrant a stronger treatment. A better option may be humira. It is a shot but comes with the proper dose already in it. No worrying about nurses having to give IV or having to monitor a pediatric dosage in an adult setting. I hope this helps. Google humira. It is a similar drug to remicade except for the fact that it is a shot.

 

[Patricia56]

I would ask the biopsies be reviewed by a pathologist in Singapore as part of the review of your son's case. Was the CD diagnosis solid or could he have Ulcerative Colitis?

I think holding off on decisions until you have the consult in Singapore is a good idea. And 3 weeks isn't necessarily very long for getting him into remission before trying to drop the steroid dosing. Have you considered (or have access to) using EEN?

No matter what the Singapore doc says you are the one who has to decide what you are comfortable doing for treatment once you return to KL.

If the recommendation for Remicade is confirmed then you may want to see if you can get the first infusion right away there in Singapore where presumably they have some experience using this med. My son responded to his first remicade infusion within 4 days - while there's no guarantee it isn't unusual to get a rapid obvious response to remicade so you may see some improvement before the next infusion is due.

While it is nerve-wracking to think about doing an infusion at an adult infusion center that has never used that drug, there is an established protocol for using remicade that they should follow to the letter. He should be closely monitored particularly during the first few infusions to detect any reaction early - BP and other vital signs. They should have rescue equipment on hand as a matter of course (not that you will need it OK?). If they follow the protocol, check vitals, keep him on the premises for a while after the infusion is done (first few times) and be prepared for the unexpected (which should be standard procedure) then I think you could go forward with a reasonable expectation that your child is safe in their hands.

Humira may seem like a reasonable alternative but I expect it may be much more difficult to obtain there. It has to be kept cold during and after transit. Also the shots are painful for most kids.

IN the interim, you might ask your current GI to start him on Methotrexate. It usually kicks in sooner than AZA and could be continued with Remicade as a way to reduce the chances of developing antibodies to the Remicade.

Hope this helps.

 

[Sascot]

Sorry to hear about the flare. I agree that waiting for the paediatric GI is a good idea. Your sons flare does sound like a good case for Remicade so he can hopefully improve a lot and start growing and feeling well. It would be great if you could get the first infusion in a paediatric centre, then maybe ask for fact sheets and safety protocols for kids to take back with you. Good luck with the appointment, hope you get some good answers

 

[Jane and Nick]

Hi guys thank you for your replies,

I totally agree waiting to see the consultant in Singapore is the way to go and I appreciate knowing that DS was put on Remicade with lesser symptoms. I also thought of Humira and I think Patricia may be right about it being difficult to get it over here. I wanted Nick to have his second varicella shot before we started on any immune suppressant but the vaccine are not available in Malaysia at present, the closest place is the United Arab Emirates! My peadiatrition said they were looking at getting some from the USA but because that type relied on cold storage they can not guarantee the process. I was wondering about his diagnosis but when I asked the GI she said it is possible to have Crohn's just in the colon, how ever we have not had granulomas present in these biopsies, nor have we ever had an antibiotic specifically for his IBD. Am I right in thinking the treatment options are the same in UC and CD ?
I will find out if we can have the first few infusions in Singapore although I need to keep my local GI on our side as I can't just pop over to a different country in the middle of the night if we need urgent help.
Thank you all for your advise it is wonderful to have all this knowledge and experience to fall back on.
It's almost 5pm over here and I think a glass of wine may be in order, it is the week end!
X

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[DustyKat]

Since you have to wait month anyway I agree wholeheartedly with waiting until you see the consultant in Singapore and with you wanting to have the validation of a treatment plan from a paediatric GI. :ghug:

Speaking of Singapore, why can’t they get the Varicella vaccine from there?

Crohn’s Colitis (Crohn’s in the large bowel only) is one of the 5 types of Crohn’s and you will find that children, as pre teen, are more likely to have disease located outside the small bowel.
Granuloma’s are the clincher for a definitive diagnosis of Crohn’s from the pathological point of view but only about 50% of those with Crohn’s will have granuloma’s present. Matt didn’t have granuloma’s.

It surely does sound like the stronger medications are needed hun and soon. :ghug: Best to get away from the steroids too and onto the steroid sparing medication.

Good luck mum, you are both in my thoughts. :heart:

Dusty. xxx

 

[Jane and Nick]

Thank you Dusty,
It seems the shortage is in the whole of Asia, I will ask when we see the Dr but when I phoned the 3 hospitals in Sing they were all out of stock. Very strange ?

Isn't it amazing how much I want it not to be CD, it's not like UC would be a walk in the park. I know we are lucky to have a diagnosis and a treatment plan but I wish it would just go away. Guess I am in denial but know the truth, wonder what you call that ?

Just got my confirmation for the appointment in Singapore, now should I tell my GI I am going......?

X

 

[DustyKat]

That is strange. I haven’t heard of any shortages here. I wonder why they would suggest the US over Australia when the flying time from Darwin to KL is shorter than from the Emirates and from Brisbane is only a little more? Hmmmm.

Guess I am in denial but know the truth, wonder what you call that?

Grieving hun. :ghug:

Not knowing your GI difficult to say, but….

Given you have a child with Crohn’s and there are no paediatric GI’s in the country then an adult GI should have no issue with you seeking one out.

I would say something like: I find this very difficult to say as I have no desire to cause you offence. I appreciate all you done and are doing for my son but I would like him to seek out the opinion of a paediatric GI and I hope you understand my desire to do so.
If a doctor starts to get snooty about things then I usually drag up the what if it was your child card. :wink:

Do you think the GI is open to you seeking out a paediatric specialist?

How do things work in Malaysia with other disorders that involve children? Do they see paediatric specialists or adult?
What I am getting at here is if you were in the UK, Aus, US, Canada and so on an adult GI would not be seeing a child, unless under exceptional circumstances. Therefore you can use that as an argument as well if needed. It is not your fault that Malaysia doesn’t have a paediatric GI and your child should not be disadvantaged because of it, especially you have the means to seek out one out elsewhere.

Dusty. xxx

 

[Jane and Nick]

Hi Dusty,
I think I need to have you Skype in on the meeting :smile: There are a couple of paediatric GI's but they do not treat expats, you basically have to be Malay. When I called they hung up on me, I had a Malay friend call and she said that the scopes had been stolen so best not to go. I am sure that they are very good at current things but IBD is so rare here that it is an anomaly.

I may say the insurance requires a second opinion ? I am terrible at hurting people's feelings, but will step up to be an advocate for my boy if I have to.

I think I may speak to my husbands oncologist about having the infusion in the day care centre where he receives treatment, I know they are very well set up and I trust them. Nicer surroundings than the scope day care unit.

I wonder why they don't get the vaccine from Australia ? Most odd.

X

 

[DustyKat]

No worries, I’ll be there! :lol:

Whoa re being expat and the whole IBD thing in Malaysia. All the more reason then that it should not be an issue seeking an opinion elsewhere. After all how can the GI get the ***** when the paediatric specialists refuse to see you?

Say whatever you need to that doesn’t burn your bridges, if that means lying then so be it. It it makes you feel any better, I would! :lol:

Going to your husband’s infusion centre sounds like a good plan. I imagine they would be better set up and more experienced.

I don’t know why they don’t source the vaccine from here either. Seems stupid.

 

[Jmrogers4]

You have already received some great advice and I have nothing to add other then, my son was recently put on remicade and we are seeing fantastic results (13 pounds over the last couple of months, no height gain yet but we have only finished our loading doses about a month ago). We have don the AZA route twice now. We got good results - it took a long time and not nearly the results we've seen with remicade.

 

[Farmwife]

Hi, sorry to hear about the flare. I do hope it settles soon.

My Grace is now on humira and mtx. We're just now seeing some progress. She's only been on humira for three shots.

 

[Jane and Nick]

Thank you Jmrogers4, when the doctor suggested Remicade I thought of you and it gave me comfort having read all your posts and updates and Farmwife so glad things are beginning to settle down for Grace.

Wouldn't it be lovely to go to bed and not worry ? I find myself looking at other families who complain about such trivial things and wish that was all we had going on ! Trying not to go there and I am very lucky that both Nick and Emma are such wonderful kids so pleasent and polite and loving but just wish I could make Nick healthy.

 

[DustyKat]

Wouldn’t it! I have often pondered changing my name to WorryKat! :lol:

You have such a full plate hun and I hope with all my heart that Nick soon finds long and lasting and relief, bless him. :heart:

Dusty. xxx

 

[CarolinAlaska]

Coming in to this late, I see you have all the advice that I would give. I think the second opinion is a good idea for your peace of mind if nothing else. You can also discuss the dangers of getting it in an adult infusion center. What does your doc think of the oncology infusion location? Sounds like a better option if they do kids and will take your son's case...