4 year old dx with Crohn's Jan. 2012

[LBs_Mum]

Polly,

Thank you for sharing your story about Lucy. I am glad you have found some great doctors that are caring for your little one. Our son spent the first three and half weeks of Jan. 2012 back in hospital with his 2nd episode of toxic mega colon (he was hositalized in June/July 2011 for several weeks also along with 5 fistulas on his bottom for what they said was toxic mega colon but what we now know was a flare up). He has spent most if his short life in and out of doctor offices and hospitals. He has struggled with bowel movements since birth and was placed on Miralax (movicol) at 6 months.

My husband is in the Forces so we are currently in Germany so the language barrier adds another layer of complications. We are trying to get back to the UK for further treatment as we are terrified of the levels of medications he is on. What is more frustrating is that we have been under the care of a ped. gastro specialist for 2 years here and have been supplying stool samples every 6 weeks. His calprot. levels exceeded 1200 the week before we landed in the hospital and while his have never been normal they have never been this high! We have now requested copies of all his records and are in the process of having them translated.

This most recent hosptialization was so scary, they really did not know what was going on. He is also not what is considered a standard crohns paitent. His symptoms are not a typical -- chronic constipation, very tall for his age (although slender), there is so much more to his story. We are now home but feel lost. They have told us to keep his diet limited - little to no dairy, low sugar and of course no processed food. He is a very determined 4 year old and is quiet happy to go without than eat some of the approved foods. Our problem is that he is not allowed to lose weight or he will be placed on a feeding tube. The doctors here believe he has had this condition some time possibly since infancy based on the results of the colonoscopy and endoscopy (his insides look awful)but they have not treated someone this young.

This is my first post on here so I am hoping someone will have some words of wisdom. Polly I am hoping you can help with pointers of current treatment in the UK so we can know what to expect upon our return. I apologize in advance for adding to your post I was not sure how to create a new one -- thank you for any help.

We really are feeling very alone and although we are trying to educate ourselves there is not much out there for children this young and a ton of information on the internet that causes much confusion.

Thanks,

S

 

[DustyKat]

Hey S and :welcome:

I know you have made reference in your post to Polly so I hope you don't mind that I have moved yours to it's own thread.

I'm so sorry to hear about boy...:hug:...but I am glad you have found your way here, it is a wonderful place for support and info.

You will find many here that don't have diarrhoea as a symptom and of those many that have a tendency to constipation. Although I am not in the UK I think you would find that a first line of treatment for children is Enteral Nutrition, however this may prove difficult fro a child your son's age, oh, I see now that they have already mentioned a feeding tube to you. This type of feeding can be used for weight gain but it is also used to induce remission. I think the doctors have started you on the right path as far as diet is concerned and in many ways you have probably been told more than most when it comes to diet as it would seem that many docs feel it plays no role at all. Please have a look through the Diet Forum.

There will be others along with better advice and experience than I when it comes to younger children.

Good luck to you and your little one hun. Welcome aboard!

Dusty. xxx

 

[LBs_Mum]

Thank you Dusty Cat, I was not sure how to create my own topic. Any help would be welcome at this point!

We feel very much left to our own devices. Our son is on a regiment of steroids, antibiotics and auto immune suppressants. The elemental diet was not really an option to start as they hard already started the steroids prior to receiving confirmation of Crohn's - he was just too ill to perform the colonoscopy & endoscopy when they did finally stablize him after 3 weeks they perfromed it in the OR just in case something ruptured it was a very scary time for all.

The pathology report finally came back last week confirming what they had seen with the scope. We are trying to reach out to see if anyone has had any luck with the elemental approach vs. medication in a child this young. He is a little boy who is deathly afraid of doctors and hospitals (which is very real and understandable). We just really would like to connect with others that are facing these challenges. Most we have come across have been older.

Thank you for your help and support it is much appreciated. I am so glad we stumbled across this forum and hope to gain more knowledge from all the people here. All of you seem so well versed in this already. We just want him to be able to start school in the autumn and have as near as normal life as is possible, he has faced enough already it is time for him to just enjoy being a child. Thank you for being a place where parents can feel safe enough to ask questions without judgment!

Australia is a wonderful country have a great aunt who lives in Toorak.

 

[Crohn's Mom]

Hi S

I just wanted to welcome you to the forum, I'm glad you found us.
It sounds like your little man has really been through it already, I'm so sorry.
While I really don't have any advice, I wish you the best of luck in your journey and I hope you can find some solid answers quickly.
There are a few others on here with very young children who either have Crohn's or UC, so hopefully they will be along soon and can help you out.

big hugs and hang in there !
It must be even harder being in Germany and dealing with the language barrier....I can't imagine.
:ghug::ghug:

 

[DustyKat]

There are others here with young children but IIRC enteral nutrition hasn't been successful. perhaps, as in your son's case, the disease has hit hard fast when it was apparent. Although my children were much older it was the situation we found ourselves in and EN was not a choice.

Research does show that EN in children is just as effective at inducing remission as steroids are, particularly if there is small bowel disease, but again it not suited to everyone so don't feel you have failed your son if you have not gone that way.

The combination of medications your son has been prescribed is standard and as you know , the focus right now is the get him stabilised and feeling better. Going down this path straight up does not mean you can't change tack later on. I fully understand how difficult it is to have your child taking these drugs but as you say, you want your child to start living a normal life and remission is what will provide your child with the opportunity to do that. For some people remission can be attained and maintained via diet alone, for others EN and diet, for others it is milder drugs and yet for others it is the stronger medications. I think the main thing to bear in mind is there is no wrong decisions here, just different ones. Some people have very strong opinions about going down a natural route and yet others are strongly pro medication but what is right for you is what works for your child, there is no point following someone's advice to the nth degree if it doesn't work, I know you would know that, I'm just putting it out there.

We have all been on the same situation you now find yourself in S, 5 years ago I knew next to nothing about Crohn's and it is only over the ensuing years that I gathered the knowledge. You are doing great! Ask questions of us and remember, there is no such thing as a dumb question. Ask your doctors questions, read, read and read some more, knowledge is power and it will set you well on the path to being the best possible advocate you can be for your child.

Please have a look at the sticky thread at the top of this forum, it contains some wonderful articles...

http://www.crohnsforum.com/showthread.php?t=18416

Australia is a wonderful country

Now how can I disagree with that! :lol: Thanks hun.

We are here for you S...:hug:

Dusty. xxx

 

[polly13]

Hi Lbs Mum

First of all I am so sorry to hear about your little boys diagnosis and I know how tortured you feel about it as we went through it with Lucy less than a year ago. He also sounds a bit like Lucy in that he was always in and out of doctors sugeries etc and also the contipation things rings home to me.

It must be so difficult for you being away from home and dealing with the language barrier although I hear that the health system in Germany is excellent.

In relation to the UK, I am in Ireland so I wouldn't be fully up to speed with how the UK system works, I do know however that they have one of the best childrens hospitals in the World at great ormond street. email address is www.gosh.nhs.uk. I have had a brief look at the site and they have a GI department. If you are looking at getting treatment in the UK, I would suggest that this hospital be your first port of call. It has a wonderfull international reputation. I have no idea what the situation is in relation to treating US citizens (as this would work differently to EU citizens) but I assume your insurance will cover it.

In relation Ireland where I live, we have a specialist centre at Our Ladies Hospital for Sick Children in Dublin, there is a GI centre of excellence here also. They also have a research foundation and are actively researching paediatric crohns disease. We see a consultant there every three months but I am in weekly contact with the team of specialist nurses attached to the unit. No problem is too big or too small for them to deal with and they always call me back within an hour. Also if she needs to be seen, they ring my local hospital and speak to the consultant paediatrician there before she arrives and again post examination and any care that is needed they manage it from there. I am more familiar with the Irish System so if you wish to travel a little bit further I am happy to assist in any way that I can. I know my health insurance covers overseas care so I assume yours do aswell. Specialist paediatric services are provided free of charge to Irish citizens, but we have a two tier system where people with insurance can get private consultations initially. The cost of the initial private consultant for Lucy was €180 which by US standards Im sure is not a lot. I imagine the costs in the UK are similar.

If you want to email me directly with specific questions around the uk or irish health system I will do my best to find out. I actually work in the Irish Health System so I should be able to find out anything you need to know. In relation to the UK piece, I have a number of contacts that I deal with so I am happy to find out anything I can for you also.

Big hugs to you and your son and I hope you start to feel better soon. I found this forum about a month ago and I must say it is great and the support on here is amazing and it is really good to know that you are not the only parent that is tortured by the diagnosis.
Good luck