5 yrs old and starting Sulphasalazine!

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Runninglady

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Hi, This is my first post so please excuse any mistakes!! I have a young child age 5 with Crohns, she was diagnosed at 3yrs and been doing ok but over the last 4 months been very unwell with flare ups! Her consultant wants to put her on Sulphasalazine and just wondering if someone has any good or bad things about this medication! Thank you in advance for any replies.
 
Hi Running lady and welcome to the forum!

You will find lots of good info in the threads for Parents of kids with IBD.

I was on sulfasalazine for years when I was dx with Ulcerative Colitis. It is a relatively mild drug with very few side effects and safe for long term use. If I remember correctly, I also took folic acid when I was on it so ask your doc about that.

Good luck - hope your little one starts feeling better soon.

-Amy
 
Runninglady

I apologize I can not help with any medication info, but was wondering if you don't mind me asking how was your child diagnosed, what where the symptoms? At such a young age I am sure that is so hard on them and you as a parent, communication is such a precious tool and I can only imagine how hard it was! (((HUGS)))) to you and your young one, wish you and your family all the best!
 
She had all the symptoms from birth, very loose stools at least 5 times a day!

We saw various doctors but was only taken further when she filled her nappy in the doctors surgery and they could smell and see that it was not normal-for the first time in 2 and a half years we were now being listened too!!!!!

Over the next month or so she had Colonoscopy and Xrays which was scary for us as parents but was probably horrendous for her but it had to be done.

Since then she has been doing ok, the odd flare up but under control if we strictly watch her diet! The last couple of months has been a different story as when they reduce the pred the flare up starts up again and been on and off pred for the last four months!!!!

As she is so young I am concerned of long term effects of these tabs and any new medication they are going to give her!!! I would do anything just to swap places with her.
 
Awe :( I am sorry your little one is having so many problems :( I am allergic to sulpha so I cant help you with your question but there are several people on here who have taken it and can. I just wanted to welcome you to the forum and hope your little girls health improves. Must be very difficult for you as a parent to see her go through this.
take care
Wendy
 
Hiya!

I was diagnosed with Crohn's when I was five and put on Sulphasalazine at the time. I can't recall any specific side effects from the medicine, and for the most part it seemed to help me. Of course, this was a long time ago. ;) But on that note, I was on the drug for the better part of five to seven years and can't remember any long-term effects.

I know as a parent it must be scary to see your girl going through all these tests, and though she might be a bit frightened by them now, it'll make it so much easier for her to go through these things when she gets older. Plus, she's probably a bit too young to fully understand what's going on and really remember these things (at least that's how it's worked for me), so hopefully it's not too traumatising.

I hope the doctors find something to help her soon!
 
Hi, thank you for your reply. I hope you don't mind me asking but after 5-7 years did they stop working for you???

She does find it all very distressing-every time we visit the hospital she begs me to ask the doc not to take blood!!!:( Her understanding and language skills are below her peers due to Autism but I think she does better than me some days!!!! Lol
 
Bless her heart, so sorry you have to go through this...I have no doubt you would trade places with her in a second, any loving parent would! Best wishes to your daughter and your family!
 
I really do hope it works for her. I was 9 when I was diagnosed and that drug just made me sick and actually makes a lot of people sick. Its an old drug and there are better ones out there if that one doesn't work. My doctor prescribed Asacol after they realized that the sulfa was doing much more harm than good. None of my doctors prescribe that drug anymore unless that's all their insurance paid for. Just watch and see if her symptoms get any worse and contact her GI if they do. If they get better, awesome! :D

Both Sulphasalazine and Prednisone are the two drugs that I know of that tend to give terrible side effects more often then not.
 
I cannot recall exactly, but I think my doctor switched to Asacol at the time simply because it was finally available on my parent's insurance.

And I don't blame her for being scared! I used to cry and cry every time I had blood work. I think I only stopped getting worked up about it after I was eight or so, and that's when one of the lab nurses explained it isn't so bad if you don't watch! :)
 
Thank you Carrie,

does Asacol work better than Sulph?Less side effects? I really don't mind paying as long as she gets what's best for her-not what the NHS think is best!!!!

We are going back to the consultant on Thursday, he is brilliant and very patient with her, just trying to make sure that we are ready and hopefully get her the best medication to suit her!!

It must had been scary for you, so young and not fully understanding what's going on!!! X
 
I always watched (wasn't afraid either). Does that make me a weird kid? :p

It depends on the person if they will have side effects at all. Both can have awful side effects but it really depends on what works for her. For me, I had no side effects with Asacol but had more than enough with the sulfa (I'm not allergic to sulfa drugs either). All drugs have nasty side effects as a possibility but the GI will know what works best for her and if it doesn't work then they will keep trying something else until they get the flare under control. If you're willing to pay for the drug yourself without the help of the insurance company than that may be difficult. I live in California and took 1500mg/day of Asacol and the cost for that each month was close to $600. The drugs aren't cheap over here but maybe they are where you live. One thing some people do is contact the drug company directly and they may be willing to help with the cost.

When you see her consultant on Thursday ask them why they want to treat her with that particular drug instead of other drugs that do the same job. That's what I always ask my doctors. I read up on other medications before my appointments so I can understand the medications better and my own illness. Plus that way I wont be treated with a medication that my insurance has chosen simply because its cheaper. It may be cheaper but there have been more complaints about certain drugs than others so I try to avoid drugs like that myself.
 
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Sulfasalazine was the first med I was ever on for Crohn's, and it kept me in remission for quite some time. I had no side effects from it.
I had to switch to asacol so I could breastfeed.

I'm not sure, but I seem to remember something about drinking enough water while being on it. You could ask your doc if that's true.
Good luck with your little one, I hope it works well for her for many many years.
 
Ascol vs Pentasa

If the child has Crohns then Pentasa is better since its delivery mechanism is designed for Crohns in the terminal ilieum and colon. Ascol is designed for ulcertaive colitis furhter down in the large colon not the small bowel..... sulfa is a systemic med that enters the blood whereas Pentasa and asacol are topical ion the colon and are not absorbed to the degree of sulpha
 
Asacol does release in the Ileum and in the colon. Sulfa is time release too just like Asacol and also states that its meant for UC but both release in the ileum as well which is one of the reasons its used to help treat Crohn's, especially if its active in the ileum.
 
Asacol really only seemed to work well for me until I had my first resection. After that, I was switched to Pentasa as it was thought it might work better considering a long stretch of my bowel was missing. Now I'm not on any of these drugs.

I certainly think you should ask your daughter's consultant about all the options available, and what potential side effects you should watch out for on the drug she is ultimately prescribed. Since you are on the NHS, you might have some more options than my parents did when I was growing up (I'm from the US), so cost might not necessarily be an issue (then again, who knows with the NHS reforms!).
 
Hi, thank you all for your replies........ new to this and just want what's best!!!

I'm going to research best I can before Thursday and also have my questions ready. I just don't want money to be any issue regarding her needs/medication.

I also worry due to the Autism her communication skills are below her peers and won't say if she was feeling any side effects! I know if she is in a lot of pain as she will physically be holding her stomach but wouldn't say! Etc. Will just have to keep her from school maybe for the first week to keep any eye on any changes!!!

As a mum should I be taking out medical insurance? We do have NHS in the UK, but would she benefit if we had medical insurance??
 
I have no idea what NHS is but I do know that having an insurance company that pays for everything (doctor visits, ER, all procedures and medications) is ideal (and what I have right now (Medi-Cal/Cen-Cal) except they have a limit on the number of medications they will pay for in a month but that's only been a problem once) for anyone affected with a chronic illness that has no cure. Money may be no object right now but it may be in the future. Would be better to put some money away for her once she's grown up and wants to live on her own rather then be tapped out by then (assuming no cure is found by then). But that's just my opinion. Find out all of your options to see what's best for her and your family.

As far as not saying how she's feeling, that's common with all children and not just her autism. I sometimes kept how I felt hidden too. My mom always asked how I was feeling and asked specific questions and even went as far to press on various parts of my abdomen to be sure. I had a central IV ( in case of an emergency) in at the time and she was very worried about me. She always watched me take my medications and asked specific questions related to the side effects of the drug to see if I had any. A lot of times kids just don't speak up and you have to speak for them. If they ever did say that their tummy hurt, ask them to point to where and ask them to describe it or ask if it feels like ________ and then give some specific ways it could feel, describe sharp, burning, dull, ache, throb, coming and going vs constant etc. Describe these pains in a way that they understand. Children know pain through their own life experiences so use that knowledge of how they've been hurt in the past.
 
Hi, thank you again for your reply.

I have a lot to learn and research to do! Before Thursday morning!!!

I'm going to do a picture pain chart for her, it might help her explain things better and won't feel that mum is nagging again!!!! I might not work but I will try.
 
Unfortunately, what I've found with private health insurance in the UK is that it can be pretty much impossible to get coverage for a chronic condition. I have Bupa through my employer, but it's pretty useless for my specific needs. If you have the patience to research all the options, then by all means, it's probably worth trying to get private insurance, but research carefully!
 
Thanks Carrie,

We did look into Barclays but as soon as we raised the Crohns they said it wouldn't be covered! If we can get all she needs with the NHS that would be perfect and her GI doc is really good so I wouldn't want to change from him.
I hope you don't mind me asking-have you been able to get all your meds meet with the NHS?
 
Hi Runninglady

Im so sorry to hear about your little girl - it must be so hard for you!

I am in the UK and have had no problems with medication on the NHS. I do have private healthcare through BUPA but they, as with pretty much all insurers, will only cover for a serious flare up of Crohn's that can be addressed - for example, my insurance covered my recent resection but then after my post op check up I had to go back to the NHS for my regular check ups etc. I think my insurance will also cover scans and colonoscopys etc if it is to explore a worsening of symptoms. So you may want to consider it for situations if her symptoms worsen but for regular, ongoing appointments to discuss meds etc you will have to stick with the NHS - but like I say - Ive not had any problems with the NHS at all - in fact my doctor will fit me in for an appointment at the hostpital almost immediately if my symptoms get really bad - if your doc is really good you shouldnt have any problems.

xx
 
Hi, thank you for all your replies.

My husband is going to start looking in to insurance but our GI is very good and would be silly to change from him so no need to panic I think!!! Says me!!!! Lol

We have an appointment in the morning, I think it's best that we just question why this medication and go from there.
 
Hi runninglady
and welcome

This is just my 2 pennies worth here, but you won't need any insurance for your little one, everything is covered by the NHS including meds and scripts.
On another note, I work with little Autistic people and the rate of bowel disorders in my school is very high. Has she been tested for Coeliac?
Also, the National Autistic Society will help you with any queries.
Also, the book 'Breaking the Vicious Cycle' has info on the Specific Carbohydrate Diet which is beneficial for kids on the Autistic Spectrum.
And finally, pictures, symbols and drawings will help your little un to communicate her pain, eg, a sad face, a happy face, and where it hurts, a drawing of someone rubbing tummy, or head etc, that's a good idea!
hope your appt turns out to be a good one and she gets all the help she deserves.
good luck and let us know how you get on
lotsa luv
Joan xxx
 
Hi, thank you all for your replies, our appointment this morning went well and the doc thought she looked better than last wk....no weight gain over the last 4 months but shes not in pain!!

Starting sulph today along with the pred which we are reducing each week and hopefully the sulph will do the trick and keep her in remission!!!! Crossing everything!!

We did ask the GI if we would have any better medicine if we went private but he said
The same as Astra that we wouldn't have any better and even the most expensive drugs
is available on the NHS.

Hi Astra and thank you for your reply...

I don't think she has been tested for Coeliac?? Is there a link?
We have got the book but she is very very fussy regarding her food and we found she was hardly eating anything, she is on a gluten free diet with us which does help with the Crohn's but not the Autism!! Maybe we should give it
another try as it's probably 2 yrs when we last tried and maybe she would
adapt better to it now??

There must be a link with IBD and Autism!!! For some children anyway!! With our daughter she has had both since birth, although only being mild on the
Autism I new from 4 days old! As a baby she used to do PECS with her but
over the last year she doesn't seem to need it anymore and moved on to
prologue2go on the iPad - this helps her getting what she needs through
English rather than welsh as she will need the English to become more
independent with age. I will have to do a picture chart regarding pain as that is something she would not complain about unless it was causing a lot of discomfort! Thank you Astra.
 
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Hi runninglady

so glad your appt went well today, really hope she starts to feel better on the Pred.
Did the doc mention extra calcium supps for her? Called calci-chew
If she can't tolerate the sulpha in the other med, another alternative is Asacol or Pentasa, same ingredients, does the same thing, but are sulpha free. Something to think about for the future.
I've always believed there was a link with IBD and Autism, only from the high rate of it in my school. I did my dissertation on it, and a survey about the link between IBD, MMR and Autism. Remember Andrew Wakefield from 1997? He was ostricised when he mentioned the link between MMR and Autism? He reported on Crohn's too.
Oh and if she's coeliac, you're doing the right thing anyway with the gluten free diet. Coeliacs are allergic to gluten. But ask for a test anyway to rule it out.
I agree with the outdated PECS! We've so moved on with technology, the iPad is the way to go alright!
Good luck with everything
xxxx
 
Hi,
I did ask about vitamins but at the moment he said she wouldn't need anything until having her bloods checked in two weeks and then every month after that if all is ok. We will be going back to see him in 2 wks after the blood test. I will ask then about Coeliac, rather be sure and rule it out.

I didn't realise that he had also reported on Crohn's-something for me to look into.

Thank you for all your help it's been a stressful few days but feel much better by tonight!
 
Hiya again!

Calci Chew isn't a vitamin as such, but it's vital to take whilst on Pred. Prednisolone is a bone robber, wouldn't like your little un to be suffering with bone loss in the future, which can be prevented with calcium supps.

http://www.crohnsforum.com/showthread.php?t=10755

here's an old thread from last year, we discussed issues of autism and crohns, great bedtime reading, enjoy!
xxxxx
 

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