Hi All My son age 5 has just been diagnosed

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Lewiss mum

Lewiss mum

Joined
Sep 16, 2012
Messages
229
Hi everyone , well were do I start I.ll give u all a quick rub through of were we've been the past 3 years lew started with pain 2009 then 30 hospital visits, 3perianal surgerys, lost count of the times he's has peri anal abscess,s , septicaemia , stomach ache pain . Diarraiah , 2 gastor docs 1 , 1 community paediatrician , and now 3 years on he FINALLY had a colonoscopy and endoscopy and they found his large bowl leading into his small intestine ulcerated, ...:( And after all this he still smiles :)and all he wants to do is play football, I think I was in denial I never actually thought they would find anything when he had his colonoscopy and upper gi , I burst out crying I was in some relief then I was in shock , I just kepted thing this is never going to leave us ,I had done some research on the endless night i sat up with him as he cried in pain I'm now getting my head around it all ,, I can see the positive that we have a diagnosis and there are good stories out there thatbpeople do manage and life goes on we are starting infliximab, also known as remicade in 3 weeks does anyone have any history with this and any side effects I need to

prepare myself for or any other help advice, Lewis is very young to be
diagnosed but I'm sure there are others who have gone through my journey
aswell . Thanks for reading xxx:Flower::Flower::)

Well guys it's offiacal Crohn's is now a part of our lives the gi doc just rang the biopsies are back.. At least thistime I didn't burst out crying I've learnt so much from this forum just Wana say thanks to everyone hopefully I,ll give some knowledge
To another mum as Ive been given so much advice and support thanks guys.xx
 
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Welcome to the forum so sorry you had to find your way here. My son was diagnosed this year as well although he is much older, 15. He started remicade right away and the only thing we have noticed is that he is pretty tired for a couple hours after the infusion but this is probably due to the benedryl they give with the remicade.

There are some parents with kids your age on here that will probably be by soon. Hang in there all the emotions are so high at the beginning and you are bombarded with so much info. Hopefully the remicade will work right away, it did for my son, and your son will feel better quickly.
 
It's so scary isn't it when were hear to protect our kids and then someone drops a bombshell on you like this I've been reading all the pro,s and cons of remicade I feel he is better on it than of it he is a normal 5 year old he plays football with his team and is currently doing a 6 week trial with manchete united for the youth team he dosnt have any growth issues at all is is a tall well built lad, were just hoping because he gets tired much quicker than the other boys it dosnt effect his chances of going further, were so proud of him he just takes it all in his stride I need to be more like him but I'm the worrier of my family. Does your son take any other meds along side remicade nothing else has been spoken of yet by my gastro
doc. :)
 
My son C, takes iron and Vitamin D, along with the Remicade. The Remicade worked really well right out of the gate during the loading doses but when we recently reached the 8 week stretches and his symptoms started returning, so right now we are on a prednisone pack and they moved his remicade dose up to every 5 weeks and also upped the dose of remicade given. It happens sometimes, you have to find the right schedule as 8 weeks seems to work for some and not for others and the lowest dose is the same way, it seems to be pretty individualized.
I know you are referring to what we call soccer but my son was playing American football and as long as everything is going well he can last as long as the other kids and be in the thick of things day in and day out. There are several parents here that have kids in competitive sports and they are all able to get back to their practice/game schedules once every thing is sorted out.
The fatigue he is experiencing could be due to his iron levels, B12 levels or vitamin D levels. My son's CD is activie in his terminal ileum so he has those vitamin levels checked as most chronies can have malabsorption issues especially when dealing with the terminal ileum and B12, D and sometimes folate. You might want to ask that a vitamin panel be ran.
 
:welcome: Sorry to hear about your boy. My 11 yr old son was dx last fall. We are likely going to remicade soon. I have come to the place that the inflamation needs to be stopped to avoid long term damage. I truly believe there is alot of research going on and advances in medical technology. Our children just have to keep their bodies in the best place until this disease is figured out.

Here is a link to the thread re remicade vs other options. Many have had positive experiences with remicade.
http://www.crohnsforum.com/showthread.php?t=40859s

The beginning is the worst, hang in there.
 
I .ll ask about vitamin supplements when I go I do give him omega 3 and a general multiple vitamin daily as he wasnt eating very well a few months back he takes pro booties 3 times daily due to the amount of ab,s he was taking because of the abscess,s, it's like I have become medically trained sometimes when I talk to the doc,s they look at me like , use been researching havnt u lol that's great news that your boy can continue with sports it gives me hope for Lewis, I believe healthy body healthy mind so if he continues to play football he will keep positive and he won't feel as if it's such a burden having Crohn's.

And thanks for the link I will do more research when he's tucked up in bed, it's 4.15 in the afternoon here . Speak soon,x:)
 
Hi and welcome.

My 12 year old daughter was dx'd in February and started straight away on Prednisone and Remicade. She was in the hospital with severe Crohns in her large intestine, stomach and rectum. She needed blood transusions and TPN as she was very mal nourished. Within 3 weeks she was back to competitive swimming. She swims for 1 1/2 to 2 hours 6 days a week and has a dryland conditioning practice once a week. I can't say Remicade was totally responsible for her quick return as she was also on Prednisone but by spring she was totally off Prednisone. In the spring she added back her track team practices twice a week. Remicade has been wonderful for her and she has experienced no side effects. There are risks involved but like some have said the risk of undertreated disease far outweighs the risks of Remicade. Further the risks with Remicade are much much lower than the risks involved with such things as letting them ride in a car or swim everyday. She does get tired but like Clash said that is from the allergy meds they give the kids prior to infusion to prevent an allergic reaction. The infusion centers are great with the kids and my daughter now looks foward to her time there relaxing and being doted on.

There was a time when although Remicade was doing the heavy lifting my daughter wasn't "all the way" better so we supported the Remicade with a 6 week course of exclusive enteral nutrition. It sounds like you have done a lot of research but if you haven't heard of EN or would like more info just ask as there are a bunch of us here who have used it with much success and we would be happy to explain.

I also here Remicade is very good with perannul disease so it sounds like you have made a good choice.

Good Luck and keep us posted!
 
Remicade Remicade - wonder drug.
DS has worked his way up through all of them this past year .
He was dx at 7. Issues fr his stomach to his rectum.
We love Remicade so far.
 
Sorry to Hear about you little guy.
My dear Grace is three and she also smiles through life.
Even though I break down. We fought for along time to get her help
and I hope soon will have some answers.
Hang in there and welcome aboard.
 
Hi and welcome. Sorry to hear about your son's diagnosis but at least you know what you are dealing with now. I hope the remicade works wonders for him - we don't have any experience with it, so no advice there, sorry. Our GI, etc, don't really seem to have much advice regarding diet or supplements - pretty much just give medications and leave it at that. Good luck!
 
Im sorry to hear about your little guy, I was diagnosed around the age of 8. I can only imagine what my mother went through. I have to tell you though as many doctors and tests that I went through. When they put me on Remicade it was a miracle! Im sure your son will get better with remicade as well.
Best wishes
Emily
 
Welcome and hugs to you and your son....xo My 9 yr old little boy has just been diagnosed as well, and we are starting on the road to the new normal...

I've cried so much, for his health for what we will probably go through but I've found such wonderful support online here, and actually everywhere within the IBD community..just remember you are not alone xo
 
My daugher was also dx this year a 16. She is back swimming 10 to 12 hours per week.

The first weeks are the hardest.
 
Wow what words of encouragement already, remicade does seem to be a very good medication I do hope that when he starts to take it he feels the benefits since his last op 5 weeks ago I see an improvement everyday, but without proper Meds I no with experience the abscess wil come back, I will ask my doc weather the vitamin supplements I'm giving are enough for him or if he wants him to take any others , Lewis is going to a play specialist this week as he has developed a needle phobia , I have reintroduced new words to him so the new word for pain is , chips and gravy lol so we try and laug when the pains there , when he has the cannula in for infusion antibiotics in the past his body regects it and he usually ends up with tracking so were going to see a special lady who will help him deal with all this , Lewis is going into school for the first after missing a week of, he can't wait to tell everyone he has " crumbs" in his tummy lol this how he says Crohn's it's really quite cute when he try's to explain he has an ulcer in his tummy from crumbs and he wil have a cannon in his hand , kids don't u just love them . I,ll keep u all posted on our journey it's great to no there is support out there and others have gone through bad and good times, xxxx:::Flower::Flower::Flower::sun::
 
Hi Lewis's Mum,

I just wanted to say 'Hi'. I also have a little boy with Crohn's. He is now 7 and was diagnosed when he was 5 years old with a perianal abscess. As soon as his GP saw his abscess she suspected Crohn's. He has had mainly perianal problems but is generally very well.

I hope that your little boy is soon feeling fantastic and the medication keeps him that way. I hope he continues to do all he enjoys in life. And I hope the play therapist can help with his very understandable fears and worries. I met a play therapist when my son had an MRI and she was fabulous.

I am pleased you have found this forum, I know I felt such a relief to find some other parents who are going through the same emotions/concerns etc.

Take good care of yourself,
LilyRose
 
Hi lilyrose, thank you so much for your post yes Lewis has had mainly peri anal probes but in between he had stomach issues I think the Crohn's had started to develop and intensify I just wish he had been diagnosed earlier but hey ho we have the diagnosis now and we are feeling more positive every day, having this forum with all the story's and advice has helped me loads , I have just had Lewis school ring and it was the deputy head , she said she just wanted to touch base with me about future spots and to tell me she has Crohn's she was diagnosed at 17 she went through years ov docs saying she was anerexic and even had malaria at one stage and was put in isolation for 3 months crazy times hey , she wS so lovely and said she understood everything we were going through and they were going to have a speacial talk in class if I gave the go ahead about Crohn's and how it can make u feel ickky and sore and bad tempered etc etc so Lewis friends understand what he's going through I thought this was so kind of her and Lewis will feel extra speacial as he loves the limelight , I'm so happy your boy is well the majority of the time hope speak soon remicade is going to happening in the next few weeks in nervous and exited how crazes that .xxxx
 
Hi Lewis,s mum and :welcome:

I am so very sorry to hear about your little boy, bless him...:hug:...and how awful for you all that it took so long for them to scope him. But as you say, you have a diagnosis now and that is the main thing. We have no experience with Remicade at our end of things but as you would heard and read there are many here with loads of experience and many with great successes. :)

It is so fab to read that your boy has a wonderful advocate for him at school, what a relief for you to know that he has someone looking out for him that truly knows what he is dealing with.

The needle phobia...maybe have a look at this website. Another parent here recommended this product, they had great success with it...

http://buzzy4shots.co.uk/

I hope the Remicade does the trick and your little guy is soon on the road to recovery and better days ahead.

Good luck and welcome aboard!

Dusty. xxx
 
Hi Lewis Mum - hope lewis is doing ok. My daughter Lucy age 4 was diagnosed at age 2 - like Lewis her main complaint is peri-anal fissure and absess, but the good news is - she is doing ok at the moment. We havn't gone down the infliximab route just yet - she is on 6mp and flagyll at the momemnt and it is holding her.
I wish you the very best with the infliximab and really hope it gives lewis some relief from his symtpoms
 
Hi there,

I thought I would join this forum and respond for the first time because I know exactly how you are feeling. My wife and I found out 8 months ago that our son Jack, who is now 10, has Crohn's disease and it was a devastating time for us . I have had Crohn's for 20 years and obviously passed it on through the gene soup.

I'll cut a long story short - we decided to try Jack on VSL3 - a megaprobiotic powder - we give him half a sachet every morning mixed into the milk in his cereal. Our consultant didn't put us off trying it, but didn't think it would make any difference. Jack has been in remission for over 6 months now - he is on no medication, he is fit and thriving, plays rugby, and is incredibly active. At his last 3 monthly check up, Jack's inflammation markers were all much reduced and the consultant told us that he has now read quite a bit of research suggesting that what we put into the bowel may sometimes act as a trigger to flare the illness - so from writing off the chance of VSL3 doing anything for Jack, he now thinks it is working for him.

VSL3 is classed as a medical food and can be ordered at your pharmacy - it can take up to a month for the good bacteria to populate the gut, but we noticed an improvement with Jack within the first week.

I do hope you and your family will give it a try - there are no side effects and it could really help Lewis .

I wish you all the very best of health going forward.

Pat
 
Hi PatMac and welcome.
It's great to hear about the probiotics working.
We use some also. But not that kind.
Something for me to look up when I have time.
 
Thanks PatMac for posting! And welcome to the forum :). Great to hear your son is doing so well! :D

We have not tried probiotics with my son yet as he has been good and I'm afraid to make any changes to the routine :eek: but I am keeping probiotics in mind, especially VSL3 (many members have spoken of it).

Do you know if probiotics can have an impact at healing/reducing inflammation or is their benefit more as a preventive/maintenance treatment?

Thanks :)
 
Tesscorm said:
Thanks PatMac for posting! And welcome to the forum :). Great to hear your son is doing so well! :D

We have not tried probiotics with my son yet as he has been good and I'm afraid to make any changes to the routine :eek: but I am keeping probiotics in mind, especially VSL3 (many members have spoken of it).

Do you know if probiotics can have an impact at healing/reducing inflammation or is their benefit more as a preventive/maintenance treatment?

Thanks :)
Click to expand...

Thanks for the welcome Tesscorm,

I can only explain what our experience with Jack has been so far :

He had all the usual symptoms, diahorrea, weight loss, etc for about a year before they did a colonoscopy and found ulceration in large bowel, stomach and perianal area. They put Jack on a six week, fluid only diet called Modulen, which he managed to complete and at the end of that they took blood and said he was in remission - - he did appear to be well at that point.

Two weeks later the diahorrea was back and the illness had flared again. He was put on prednisolone for five days which helped enormously - they then wanted to put Jack on azathioprine long term, which I objected to having been on that myself for several years. It was at this point that we decided to try the VSL3 .

So Jack started the VSL after a five day course of steroids - we think that the steroids killed the inflammation and the VSL3 is now maintaining that position - I don't think there is any real evidence that VSL3 on its own will stop a bout of Crohn's while it is actively flaring - but I am sure it helps to keep the illness in remission once the other drugs have done their job to stop the flare up.

I hope this makes sense.

Pat
 
Farmwife said:
Hi PatMac and welcome.
It's great to hear about the probiotics working.
We use some also. But not that kind.
Something for me to look up when I have time.
Click to expand...

Thanks Farmwife,

I know not everything works for everyone, but if there's no downside risk to something then it's got to be worth a shot - I've been in remission for 4 years and I don't know if VSL3 is actually doing anything - but I'm certainly not going to stop taking it now - at least it's healthy bacteria so it might be stopping me getting the cold ! :)

All the best

Pat
 
Thanks Pat,

Yes, that makes sense :) My son's initial treatment was also 6 weeks of Enteral Nutrition (not Modulen but a comparable formula) and his maintenance since then (a bit over a year) has continued to be enteral nutrition at 1/2 dose but with a regular diet added back. I believe he is considered to be in clinical remission (few/sporadic symptoms) but MREs continue to show inflammation. So, trying to decide what to do next...

But, FYI, when my son was diagnosed, one of the diagnosing GIs mentioned that probiotics do play a role, however, while there isn't enough conclusive proof to determine how/if they work, they don't hurt. He mentioned that his own wife has Crohns and she believes that probiotics have helped her immensely. Unfortunately, this conversation took place hours after diagnosis, so my head was swimming and I didn't ask any other questions (other than being associated with yoghurts, not sure I even knew what probiotics were at that point! :lol:)

Thanks again!
 
Hi Tesscorm,

Thanks for the info - I think the difference with VSL is the sheer volume of bacteria, and also the fact that there are 8 different types in it - I've been told one sachet of this stuff contains the equivalent number of bacteria of about 90 cartons of Yakult - and Yakult only has one type of bacteria !
Don't quote me on that though - maybe someone else here will know more about it.
The truth is, it will probably help some people and do nothing for others - that's the way it seems to be with this illness.

Regards

Pat
 
Hey everyone thanks pat man , for all the advice and everyone's posts I will defiantly be at the pharmacy Monday morning getting some lew drinks 3 probiotic drinks a day an has as many probiotics hotheads as he wants , I will def be getting some vsl3 and if it helps him that's brilliant he's having a few of days past few days he's just been ired and a bit off I gota feeling something's brewing so well see what e next few days bring I,ll kee
All posted ,xx
 
Thanks tees corm for the support just done research
For vsl3 it's says we have to use under docs supervision and it's only been used on kids in uk for a few months as it was only used on adults at first , it's gotta be kept in the fridge because othe liv bacteria I'm gona ask our gastro doc about it Monday so he can prscibed the right amount , so thank u PAC man or the info , 1 more thing to aid lewy to getting better , xx
 
Hi, will be following this thread with interest. Haven't really had a proper sit down with the GI and discussed treatments - doesn't seem particularly open to new ideas but who knows. Will be interesting to see if your GI in Manchester agrees to try the vsl3 - if so, I may mention to our GI in Glasgow.
 
It's a really good idea I never new there was anything like vsl3 out there just the probiotics my ped consultant suggested using everyday I wonder it's new in England u no were behind America when it comes to treatments or one research analysis which I can't post on here because my comp is crazy lol says that it's really expensive and they regulate how the nhs will offer it to patients? :shifty-t:
 
Probably true, as much as the NHS is great, having patients paying nothing doesn't encourage any of the docs/specialists to try and prescribe meds that are more expensive. Now that prescriptions are all free in Scotland I believe it will be even worse!
 
Hello All,

Just thought I'd point out a couple of things :

Firstly, there is no real clinical evidence that VSL3 is effective in the treatment of Crohn's - this means you will not get it on prescription . We buy it from our local pharmacist - it costs about £13 for 10 sachets here in Glasgow. We give Jack half a sachet per day, so around 65p per day.

Secondly - this should not put anyone off trying this - our consultant explained that the reality of the situation is that there is very limited robust medical evidence in general about Crohn's in children, purely ( and thankfully) because it is such an uncommon illness ( although the incidence is rising).

I also think medical people shy away from recommending products like VSL3 because they don't want to give people false hope.

So, do your own research, but it appears to be working for Jack :thumleft:, and I hope it can work for others .

All the best

Pat
 
Hi pat that's great news it works for your little lad I brought it up today to the doc I saw he said the same as you , the research I did on this is that it works for some and not others depends on the severi of the Crohn's and how active It is I'm willing to try anything for lew at minute but. No the only thing that's gona get things under serious control is the drugs there gona give him in hosp jus had another stint I hops and I'm seriously stressed out so is m husband we just feel like were on a roller coaster of emotions it's crazy . But defo gona try them even if my doc won't prescribed them .
 
Hi I'm so sorry your little boy has been diagnosed so young, my daughter was diagnosed this summer just before her 10th b'day. I'm sorry I don't have any advice at the moment, but I know the parents on here have a wealth of experience and advice to share.
Steph xxx
 
Hi PatMac and welcome!
Really interested to hear your story. My 12 year old girl was diagnosed in August and was put on modulen, pentasa and aza. I felt that I wasn't given any choice about the aza and the side effects worry me. Did your consultant object when you asked to stop taking it? Love to know as am considering a 2nd opinion and feel a bit stuck. Symptom wise shes doing really well and just had a normal MRI following a small bowel study.
 
PatMac, didn't realise you were Glasgow too. Which consultant did you speak to about the vsl3 if you don't mind me asking? I gather you also go to Yorkhill?
Stayincalm I understand your reluctance about the Aza, I also felt very pressured into using it. It seems to be the first stop in the UK (according to our GI). After 6 weeks it messed Andrew's liver and have managed to avoid going on anything else yet. Have asked to meet the consultant on my own so Andrew doesn't have to listen to my fears!
 
Hi all just wanted to give an update , Lewis ab,s have worked, he no longer as bum pain his tummy ache is hardly non existent so we are hopeful it has settled for now , he is very pale though so I'm thinking of tanning him up tonite lol.. Only joking ..lol.. We are waiting for the 8 th October for the big day when they have the "meeting" about his treatment.. Until then I just hope he has a quite week as it's his birthday thursday he turns 6 god I cant believe how the years have flown by and he's growing so fast ,, I,ll keep u all updated as soon as we no the plan of action ,xx
 
Thanks for the fab update! :) It is so good to hear that Lewis has responded to the antibiotics! :banana::banana::banana:

Good luck with meeting. I hope you are given a solid plan of action! :)

And last but by no means least...

A Great Big Happy 6th Birthday to Lewis!

HappyBirthday.gif


I hope he has a fab and healthy day! :)

Dusty. xxx
 
That's great the antibiotics are working, hope he continues to get better and better! Happy birthday for Thursday :)
 
Thanks guys I'm just wrapping his presents now we have got him a pep with fifa13 so he can have something to play on when he goes into hospital never I'd buy a present to make hospital easier our life's and way of thinking changed when we got diagnosed. Lew I'd on his 2 nd day of school he's been all dy yesterday were trying for a full week lol. Were goin to a lecture at the hospital on Saturday to talk to other mums and dads and doctors about IBD and find out any new research that's going on, I will update any new info I get on here I never thought I'd get my hubby to come to anything like this but he's doing as much research as me were become quite good at all this terminology I've joined. The NACC for anyone in England it's a support and info and research charity they also take peeps from abroad I've also joined there local south Manchester group so we on the path for as much information as poss , hope your all doing well .xxx
 
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Hello All,

Sorry - haven't popped in here for a while - I hope everyone's doing ok.

Sascot - we do go along to Yorkhill, and we see Dr Richard Russell or Dr Barclay - they've both been fantastic, as has Vikki Garrick, the IBD nurse specialist.

The last time Jack was having diahorrea, last Christmas time, we felt that the recommendation to go onto Azathioprine was too sudden - at that time, there was a lot of sickness and diahorrea going around within his school, and we thought he just had a bug, however, the advice was to go straight on to Aza.

We decided to wait ( of course we could have been wrong ) and things calmed down within about a week.

I think the medical team are very much into rapid intervention at the onset of a flare up - I understand that it must be easier to control and halt a flare up if you catch it early ( a bit like a real fire) but I also think that it's a bit of a blunderbuss approach - it's almost like they didn't consider that there are other causes of diahorrea.

Azathioprine takes around a month before it becomes active anyway ( so I was told) and there is also a question mark over how long it actually works for and whether or not continuing to take it long term makes sense beyond around 3 years. It's a big decision to put a wee boy onto that kind of drug, so we felt we should wait. I have to say, the medical guys were really decent about us going against their advice - there was no pressure and we were free to come back to them at any time if Jack's condition worsened.

Ultimately, no two patients are the same, Jack's experience of Crohn's will hopefully be completely different to mine, and everyone needs to make decisions based on their own circumstances.

Jack continues to be wll and is thriving - I wish you all the same for your children.

Best wishes

Pat
 

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