Hi guys. Were in a flare up

[Lewiss mum]

Hi everyone , god infeel like such a user lol
I only usually come here for advice when Lewis is bad , but when he's not in a flare my worrys go away . Then bang. The awful name FLARE UP Arrives
Lewis has been doing up until last week , the odd abscess but his body is fighting it him self and it settles in a few days , last week he got. Big one we out him on antibiotics then he went for his I fusion , them we got a phone call from the docs to say his iron was really low he needs to go I. For 4 infusions every weds he went last week and and it he seems a lot better. ,so were hoping he will get back to wear he was , the other thing is he seems happier , he is seeing a "special"lady at the hospital to help him deal with his problems he sees her next week for drawing and chatting with out mummy , he's quite looking forward to it , today was his first day of not crying I can't believe it he has cried everyday about going to school as he gets pain and hates telling the teacher , so I'm hoping it was just his iron was low and that's why hes been going through a flare , has anyone else had iron infusions and seen massive benefits ,x

 

[Lewiss mum]

Oh forgotnto say , we are super proud parents with everything he's had to deal with he got picked for the elite under 7"s bo,ton wanders squad as a striker for All not in the u,k . That's a football team in the championship league , (they go relegated last year ) , he thrives of football I don't no how we,d get him through dealing with his crohms if it wasn't for this sport x

 

[Dexky]

My son takes an iron supplement but we've never needed infusions. I hope they continue to do the trick!

Has there been any talk of needing to switch off the remi? Has he been bleeding? Why do they think his iron is so low?

 

[Johnnysmom]

Way to go Lewis!! My son loves basketball so I can relate, his sport keeps him going.:dance:

I know the Iron infusions will do a lot to make him feel better. We have not had to deal with abscesses so I am not sure if that will continue to stay in check now that his body is better able to deal with healing itself, but it makes sense to me.

Has the GI ordered any labs?

 

[Tesscorm]

So sorry he's having a tough time right now ... but, way to go on the soccer!!

I don't have crohns but was very low in iron last year. At the time, I really didn't realize how it was effecting me fatigue-wise and emotionally (hard to stay 'stable' when you're feeling exhausted!). But, once we were able to get it under control and my levels started to improve, I noticed a huge difference! Looking back, I can't believe I thought it was 'normal' to be as fatigued and as irritable as I was. I'm sure you/he will notice a difference in how he feels physically and emotionally.

But, I'd wonder the same as Dexky - why is his iron so low?

:ghug:

 

[Clash]

I agree with the others about the iron infusion helping with fatigue and such. So sorry to hear he is in a flare I hope it is controlled quickly and he is feeling better soon. That is great about the sport!!

 

[Sascot]

Sorry to hear about the flare! For some reason our GI/paediatrician seems really reluctant to do iron infusions, so we just struggle on with the iron liquid. It certainly seems to help alot of people though.

 

[Lewiss mum]

Thanks ladies , we didn't realise they were getting so low in the u,k the docs rant always forth coming when you ask do revels , we didn't no nos iron was even getting so low , sascot what are the iron liquid you have , we asked for an alternative bit they said they wanted it dont this way , we have been concerned the docs aren't always telling us whats going on so were having a meeting next week I don't wan my son being out in ,meds or having infusion as he's needles phobic to the point it took 4'30 to get a cannula in , I'm go g to ask about the iron liquid I stead , .


Also he has come out in a rash just on his stomach. First though chicken pox his doctor said she thinks it a reaction to the iron but I can't find anything on this ,

He's had no leading , his stools are a little loser were not using laxatives anymore , just his azathioprine and influx iamb they said he will be on it for two years , I'm worried what will happen when he comes of it as the docs have said it can come back with avenge
X

 

[Sascot]

The iron liquid is called Sytron - we haven't had any issues with it at all - no constipation, tummy pains, etc. Worth a try.

 

[Avery]

Lewis,s mum, Does your son drink milk ?

 

[CDJ]

Lewis's mum. You can in buy liquid iron in [ can't remember name of it ] Boots or Tesco. If you can't find it, ask the pharmasist. It is only low level iron though, so may not be enough for Lewis. Also it is pretty discusting, so take it with orange juice [ this helps it absorb better too.]

As to his needle phobia, my son was really bad until March of this year. I had 3 years of fighting to get help for him with it. He was so phobic that they took him off azathioprine as he totally refused blood tests, and being the size he is there was no way you could hold him down!
We tried many ways to get help, CAHMS counsellors, hypnotherapy, physcologist, anyone we thought could help. Not one person was willing to put in the time needed to help him to overcome this.

In the end it was a different CAHMS counsellor assigned to the hospital who finally helped Josh. She actually listened to him, and she made sure that he was dealt with how he wanted, not how medical staff thought he should be treated. He was also given a low dose of anti anxiety medicine which really helped. He now goes for blood tests with little problem. I can't say he will ever like them, but the whole anxiety over them has gone. He is now back on azathioprine as he will go for the blood tests.

You need to keep pushing for help and eventually you will find the right person for Lewis, that is all it took for us after 3 long years --- one person.

 

[Lewiss mum]

Hi avert he does sometimes his a chillers heel is cheese , is there a connection do you think and cdj I was so worn put after weds hospital visit I came home drank a large gales ov wine then la other and was so Ill the next day I just though good has it come to this that I, have made my self Ill for his crohms (I don't normally drink ) so we have a new plan we have wrote everything down what Lewis wants to happen that day and that's what were going to do and I me and his dad will make sure that we stick to it , his dad hasn't come for aloof the infusions for infliximab or iron as he's held the fort with business so we've cancelled everyone of our doggies who are coming to visit and were going to focus on making it a positive visit ,


Thanks for letting mo no about the liquid iron I'm going to speak to his nurses tomorrow and see if this is an option ,
I just hope his loads have come back better this week , hope you've all had a great weekend,x

 

[Avery]

Lewis,s mum, Milk used to put me into a full blown flare & I would be sick for a week or more afterwards. If you want your son to start feeling better he has to start eating better and not continue to eat the foods that cause him to get sick.
These are the things I stay away from:
!) Milk. or milk products like ice cream, custard, etc.
2) White store bought Eggs
3) Soda
4) Orange Juice (from the store)
5) Fast Food
6) Fried foods (unless it is fried in Olive Oil)

 

[Mylittlesunshine]

Lewis's mum Lucy takes iron liquid she has
Been on this since she was 2 weeks old
With no side affects what so ever and Lucy
Doesn't mind the taste.
You could even have your gp prescribe
It. How is Lewis doing? X x

 

[Seriously]

Sounds like the "special friend" is helping him! Hope things get better!

 

[my little penguin]

Hugs
I wouldn't pull milk unless it is causing him an issue
Every persons triggers are different.

 

[Lewiss mum]

Hi mls . He's doing better this week . He had the rash which his p thought was because of iron and then his consultant doesn't think it is so well see what he says Thursday he will going ahead with the infusion , we've pulled football for the next couple of weeks to see if his energy levels rise I no exercise does elp but not when he's tired already so well be doing some gentle walking this weekend in the park with the hounds ,

And seriously I think she is helping to
An mlp , I agree to , he has a good diet his only triggers are anything jelly in its full form
So thanks avery for the advice but his diet works for us , as you no crohns has many triggers , stress being a big one he struggles with gong to school and his treatments so we think this is whats started
, but who nos with crohns its such a minefield of do,s and donts and what works for some and not others that's why different meds works
I'm glad you've found your triggers avery stick to them and you,ll be in remission for a LNG time

Just a question has anyone heard about the research going in to fecal transplant or if it works and is it just for ulcerative colitis , hope all your babies big and small are doing o,k xx

 

[Sascot]

Glad he is a bit better. I seem to remember reading about faecal transplants on the forum somewhere, you could search this site. Good luck for infusion next week

 

[Mehita]

There is a group on Facebook called Parents of Kids with IBD and I know for sure there is one family who's successfully done fecal transplants. The daughter made a video about it and I believe the mom created a web site...? I can't recall her name, but I know she's very open to questions and sharing their experience.

 

[Lewiss mum]

Thanks Mehita, and sascot ,xx