Nick update, not a happy boy

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Jane and Nick

Jane and Nick

Joined
Apr 26, 2013
Messages
160
Hi to all,
We are just back from seeing our doctor at the hospital. We have had a frustrating 10 days of bloody D, pain and increased frequency, interestingly he manages to not have to go to the loo at school unless really desperate and spends his evenings and some times waking from a deep sleep to go to the bathroom. We finished a short burst of pred 3weeks ago and then boom all the symptoms are back. We have upped his dose of AZA to 75 and his liver and blood test are good other than his ESR is 17.
We basically begged not to go the pred route again as it seems to really mess Nick up emotionally and physically. I mentioned that I had read that antibiotics are sometimes used in USA, Europe, Australia to help with a flare so she prescribed Zinnat but I have read here that Flagyl is normally the preferred choice. Can any one tell me if taking the Zinnat is going to be worth the aggravation it may cause or should I risk offending her and asking for Flagyl.
She also recommended trying EEN for one week but the only option available is Peptamen and this is truly disgusting. Nick said he would rather suffer than drink that. He is normally very compliant and easy going but we had tears and temper. I have spent today driving around KL in obnoxious traffic and getting lost numerous times ! Trying to find ensure plus but no luck. Will keep looking but not feeling positive with the EEN.
Thank you for any advice.
 
Last edited:
I have not dealt with zinnat but when I read about it both flagyl & zinnat seem to be similar. Hopefully someone else can talk from experience with the two drugs.

If you do EEN a week isn't long enough to get any results. My kid couldn't stick to drinking peptamen and could only do it by NG tube. If you are looking to add to his diet (EN) ensure is a good one that at least has some flavours he may be able to tolerate. If he can't stick to it it isn't worth the temper tantrum and tears.

Do your best to stay off the prednisone but don't get discouraged if you have to go back. Just try to keep the dosage as low as possible. Good luck!
 
Would it be possible to have a case or two of Ensure or Boost shipped to you? It might take a couple of weeks to get to you but, at least, you'd have a supply ready.

As SM said, one week isn't enough to help calm the inflammation, but it might be easier on his bowels and still give him some nutrition while he is having problems.

Sorry, I don't know anything about zinnat.

:ghug:
 
^^^ yeah that
Through amazon or direct from the company ( nestle )
That said DS does drink peptamen it's an aquired taste that had lots of tears for a few days but at the end of the day I was glad I forced the issue since he can drink it without any problems now.
He does add choc syrup which hides the taste.

6-8 weeks is norm for EEN
 
Is it Peptamen Jr? You can them in different flavors - chocolate, vanilla and strawberry. My daughter drinks chocolate (and ONLY chocolate). You can also add flavorings (we tried chocolate syrup and strawberry syrup) to the unflavored kind.

It really does take some getting used to. We bribed my daughter to drink them in the beginning. She got used to them and then drank two a day for almost a year but it wasn't enough to put weight on her and so now she gets Peptamen via an NG tube (which she loves).

Also, if pred had side effects, would Entocort work for your son? Worked really well for my daughter.

I hope your son feels better SOON!
 
Same here bribes, awful first week of tears and gagging. Jack would literally stand over the sink take a tiny sip, gag and rinse with water to get the taste out of his mouth but pretty soon he was able to just drink them quickly. He is probably never going to like the taste but he got to a point where he didn't mind it. He chose to drink them because he was dead set against an NG tube but has said now that if he has to do it again he is going to ask for an NG tube.
 
It took my daughter 3 days to adjust to EEN and stop being miserable. She was great after that. That said, we were able to use Ensure - and also only chocolate flavour. We tried them all.

I hope he feels better soon.
 
We do the Boost Breeze juice boxes and my daughter despises them. It is a battle to get her to drink 1 a day. The kids that drink EEN just amaze me!
 
The peptamen does taste bad. What about Pediasure 1.5. They taste ok and each 8 oz has 330 calories. Does he need it to be peptamen?
 
My son drinks enshakes, only likes the strawberry one. I mix the powder with 250ml of whole milk, whizz with blender and add a few scoops of vanilla ice cream and blend again, it's actually lovely. One shake made up (without the extra icecream) is 600calories.
 
Hi just back from our follow up visit, no bloods taken and she didn't even feel his stomach! She encouraged him to try the ensure again instead of the Peptamin which he said he would do, I nearly fell off my seat. I wanted to say you little bugger but held back, because I knew he was just trying to be compliant. I asked him how he was going to do it as he had such a negative attitude to it the last time and he said he would just try again and that the ensure would taste better. So we bought the vanilla powder (only flavour available) and we will start tomorrow.
Here is my question, the doctor then said if he could manage the drinks during the day he could have something bland for dinner like a grilled cheese sandwich then another shake before bed ? Isn't this defeating the object ? Nick has latched on to this and is saying he will manage as long as he can have his dinner. Has anyone else heard of this.
His symptoms are slightly better, less frequency but still 3-4 times during the evening and often visible blood.
 
Most doctors say only the shakes and possibly clear liquids like clear broth, sprite, lollipops and gum.
 
Thank you my little penguin. Lots of information. After reading through it all I hope that it will still help us out of the flare that we are stuck in, I am a little concerned because the reports mentioned that it was used as a first time therapy in most patients and before steroids or maintenance drugs. We have used steroids several times and been on AZA since May, I wonder if that will alter the effectiveness of trying the formula. I think that it will do more good than harm so we will give it a go.

I wish I could do it for him ! Well today is D day waiting for him to wake up and make his first shake, thank goodness it's day off school.

It was very kind of you to send me all the info.
 
Most studies found that it really isn't as effective the second time around.
DS started it at the same time as 6-mp.
I never let him stop just lowered the number to two day.
This has helped tramendously with his growth.
Good luck
 
Just back to the antibiotics Jane…

Zinnat is a cephalosporin, this class of antibiotic can be used for certain types of gastrointestinal infections but would not normally be used in the IBD setting. You are correct in thinking that Flagyl (Metronidazole) is the most commonly used antibiotic to treat IBD plus it has the advantage of having anti inflammatory properties as well. The other antibiotic used is Ciprofloxacin.

If antibiotic treatment is still on the table I personally would take the GI to task about it and point out that Zinnat is not what is normally used to treat IBD.

Dusty. xxx
 
Hi Dusty,
I sent the GI a email and copied information from the Mayo clinic on antibiotics and the use in Crohn's patients and why they used certain ones, and the reply I got is below.

I tend not to prescribe ciprofloxacin in children/adolescents as there is a risk of arthropathy ( joint inflammation)/pain) in weight bearing joints in growing children
Please continue with ensure plus and finish the antibiotics.

So we finished the antibiotics and no improvement, infact I think they upset his stomach even more!
Looks like we will have to go back to Singapore at the start of the December holidays and see if they can help us figure it out.
 
There is no doubt that Flagyl and Ciprofloxacin come with their own set of potential side effects, Fagyl more so that Cipro, but Zinnat has far more GI side effects so I am not surprised Nick had more stomach issue whilst taking it, bless him. :ghug: If the GI doesn’t want to prescribe Cipro then so be it but don’t prescribe your lad a dud instead. :(

It’s a shame you have to travel to Singapore but it does sound like that is what will be needed. :ghug:

Dusty. xxx
 
Hi what a rough time.
We are back on 8 weeks exclusive EN using fortisip strawberry only!!
He is brilliant at it but also miserable.

We were supplementing with shakes alongside food for a year but now a few issues have arisen again so back to exclusive shakes. Good luck to your lad
 
Good luck positive mum, just strawberry ! Wow that's going to be tough. Nick did get accustomed to the ensure we are only allowed to buy vanilla in Malaysia ? What the government have against chocolate I have no idea, we even got in touch with Abott the company who supply KL and they suggested going to Singapore for it...sure I will just pop over to another country :) we added Ness quick and he didn't mind the taste.

Had to go in to the GI today as his symptoms became worse and he was experiencing x10 bloody water stools and pain to touch the abdomen. We have had a X-ray and blood work and have succumbed to a course of pred :( so upset that we have had to go back to steroids. A short sharp burst is what she said.

I know AZA takes time to work but we are almost 6 months in, but if they up the dose does that also take time to begin to work ? We only upped his dose in late August so could that increase also take time to work ? Grasping at straws.... But just looking for a light at the end of the tunnel. He is now going to supplement with EN and food.

Off to try and coaxes my steroid boy to sleep.
 
Honestly I would be asking for a med change at this point.
You really need to get the inflammation under control
 
I agree it sounds like time for a change of meds. Sorry he is struggling so much, hope the Pred helps. Our GI would move onto methotrexate next after Aza.
 
It's worth getting his Aza levels checked, but I'd also start asking about a different med as well. It sounds like your options might be limited there? DS did Aza for six months and had perfect levels, but continued to flare, then developed a fistula and abscess and was moved up to Remicade. I wish we would have just skipped Aza and saved him a lot of trouble and pain.

Poor Nick *hugs*.
 
Hi, the GI did say that Remicadee would be the next option.
I am just thinking allowed here but you may be able to offer me some insight.
I believe our insurance company would pay for Remicadee how ever if we have to leave Malaysia and move back to the UK we would no longer have private insurance. It comes with my husbands job, his health is stable at the moment but if things took a turn for the worst we would return home. I am worried that we wouldn't be able to continue Nicks treatment on the NHS, and from what I understand it is not advisable to stop once you have started.
If only life was simple !
 
With remicade its good to plan for today and try not to stress too much about later.
Since you may be on it forever or you maybe on it until a rxn or it stops working.
Planning for 5-10 years ahead on a med isn't a good idea.
Add in there are always new meds coming online.
DS was only able to take it for 8 months.
 
Thank you for your replies, we are going back to GI on Saturday for a check up and I will ask about the blood test to check AZA levels. Please remind me, is this the special test similar to the one at the beginning to see if he would tolerate the med ? If it is I believe I have to go to Singapore to have that done.

The doctor emailed me to say Nicks abdominal x ray looked ok and his blood test was fine except for high levels of eosinophils. She asked if he has allergic problems eg asthma, eczema ? Which he doesn't or at least I'm not aware of it. I of course went to Mr Google and discovered all kinds of reasons including parasite infections all the way up to lymphoma. It would be great if it was a parasite and he didn't have Crohn's at all.....wishful thinking but I do spend a lot of time questioning the diagnosis, anyone else in denial ? Oh and can a regular X-ray show anything ? I thought it had to be MRE/MRI.

I will ask if MTX is available here. If we started Remicadee would the ideal situation be to wean off AZA due to the nasty potential side effects or as we have already taken AZA we are pretty much screwed (not very lady like)either way.

It's really difficult not having a doctor who is an expert in this field, I really rely on this forum and trying to educate myself. Will try and get him in with the doc in Singapore soon but that is proving difficult.

Sorry for the rambling.
 
Pretty much having taken 6-mp/Aza got period time means your out of luck regardless of starting remicade.
That said we didn't want to increase the risk by staying on 6-mp ( plus his liver didn't like it ;) ) so DS is on Mtx .

X-rays show nothing except if he is constipated.
He would need an mre ( MRI plus contrast and barium).

Not sure on Aza levels ...
 
Staying on Imuran might help by preventing him from building antibodies to Remicade. But Methotrexate would also do that. It's a pretty old drug and widely used, so hopefully they will have it in Malaysia. I think rheumatologists use it more than GI's though.

We just had Aza levels done and still have not received the results even though we have gotten all the other bloodwork back..so I'm guessing it's sent somewhere? Not entirely sure.
 
Jane and Nick said:
Hi, the GI did say that Remicadee would be the next option.
I am just thinking allowed here but you may be able to offer me some insight.
I believe our insurance company would pay for Remicadee how ever if we have to leave Malaysia and move back to the UK we would no longer have private insurance. It comes with my husbands job, his health is stable at the moment but if things took a turn for the worst we would return home. I am worried that we wouldn't be able to continue Nicks treatment on the NHS, and from what I understand it is not advisable to stop once you have started.
If only life was simple !
Click to expand...

I think the NHS and Medicare guidelines run a very similar course. In view of Nick’s history I don’t believe he would have an issue qualifying. Have a look at this form and see what you think:

http://www.humanservices.gov.au/spw/health-professionals/forms/resources/4192-0710en.pdf

Dusty. xxx
 
This is lifted from a NHS guidelines PDF:

Paediatric Crohn’s disease – in children and adolescents aged 6-17 years, who have not responded to conventional therapy including a corticosteroid, an immunomodulator and primary nutrition therapy; or who are intolerant to or have contraindications for such therapies.
Click to expand...

Sounds the same as the Medicare criteria here in Oz.
 
Dusty, thank you, you are amazing ! That certainly puts my mind at rest. My hubby has his next scans in January and we have everything crossed that he continues to be healthy. It's almost 2 and a half years since his diagnosis and we didn't think we would see Christmas back in the August of 2012.
Now just to get Nick sorted out :)

Thank you for taking the time to ease my mind.
X
 
How wonderful that your hubby has done so well! I hope with all my heart that he continues to do so and I send you mega loads of luck and warm wishes that he will one day receive the word cure. :ghug: GOOD LUCK!

Squishy hugs to you and Nick, Jane. :heart:

I would just ensure that accurate records are kept regarding Nick’s treatment regimen and of all tests carried out so that should you return to the UK you have the evidence you need to continue with treatment should you move to a biologic.

Dusty. xxx
 

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