More symptoms....

[Ands]

Well Joseph woke today with mouth ulcers. This was his very first symptom prior to diagnoses, and they multiplied so quickly he couldn't eat, so I am some what concerned, well actually really scared.

He has been off predisolone for just short of two weeks and started on aza as he came off the steroids. He's been suffering with nausea because of the aza, itchy skin, tummy pain and still extreme tiredness, and now ulcers as well.

He had bloods taken yesterday so, I Think I'll chase the results today. All the other symptoms I put down to side effects of the aza but not sure about mouth ulcers.

Sometimes you feel as though nothing goes your way, don't you..... Youngest son had his first ever full blown asthma attack on Tuesday as well!

X

 

[DustyKat]

Oh my goodness Ands...it doesn't rain it pours! :hug:

Mouth ulcers are a side effect of Imuran and are flagged as one of the side effects that you need to contact the doctor immediately about. I would also be chasing up the blood results. In view of his other side effects and now the mouth ulcers I think it is best that you get onto the Doc today.

Just as a side note...have they done his levels for B12, Iron studies, Folate and Vit D?
If the bloods or doctor don't indicate an issue with the mouth ulcers and Imuran I would be looking at B Vitamin deficiencies/anaemia as a possible cause.
Also they are an Extra Intestinal Manifestation (EIM) of Crohn's when disease isn't under control.

Good luck Mum and let us know how you get on!

Dusty. xxx

 

[Mumof4]

Hi, I would chase up his bloods. Mouth ulcers are always the first sign of a flare for Matt. With regard to the nausea from meds, have you tried giving them last thing at night or with food. We found that both these helped ease any nausea. I hope Joseph is ok.

 

[Ands]

Thanks for support. Phoned IBD nurse this morning and left message. Thursday is their surgery day though so might not get a reply until later.

We reduced aza dose on Monday and splt it to take breakfast and tea. Nausea slightly better but still there.

I hope that ulcers are due to medication not a flare, don't think he could cope with a mouth full again. He had over 30 on final diagnoses just in his mouth, plus all the way through his body.

Fingers crossed I will hear back soon.

Ands x

 

[Clash]

I have my fingers crossed for you too!!! I hope the ulcers get resolved soon! Sending support your way!:ghug:

 

[kimmidwife]

Ands,
Also ask them for a prescription for magic mouth wash. My younger daughter sometimes gets mouth ulcers and it really helps her.

 

[DustyKat]

Did you hear back from the nurse Ands?

I hope so! :hug:

Dusty. xxx

 

[Ands]

He just phoned back. He will chase bloods (consultant is 2 hours away from our local hospital where blood work done), but told to stop aza anyway over weekend and he's booked us into clinic Monday. He said would phone back again should anything else need to be done after he's seen blood results.

I can't ask for a better response to that, I do feel very confident with Joseph's care. I appreciate a lot of us Brits slate the NHS but I couldn't ask for anything more at the moment.

Joseph much the same this morning but no more ulcers, thankfully. I've sent him into school, I think it takes his mind off it and he's not doubled over in pain. Sometimes it is hard to know what to do for the best.

Xx

 

[Mumof4]

I am glad to hear Joseph made it to school and no more ulcers have popped up! I managed to get Matt to school today too, he is feeling a little better. I agree with you about the care some GIs give. We are really lucky and have an excellent consultant called Andreas Szabo and his resident called Phillip McGeown. They are really approachable and even have a mobile number you can ring or text for advice. They have seen Matt up at the clinic or on the ward if there is no clinic at very short notice on a number of occasions to check him out. I am so glad that we do not live in USA and have to deal with insurance or lack of it and the costs involved over there.

 

[DustyKat]

I am so happy to hear they called back and given you fab support. It makes all the difference. I hope Joseph starts to feel better very soon, bless him. :hug:

Good for both your boy's that they managed to get to school today!...:mademyday:...the simple and normal things in life surely do make a difference!

Dusty. xxx

 

[Sascot]

That's good that they phoned back and told you to stop the Aza. We were told to stop it immediately when my son had issues. Hope the symptoms go away soon now that he has stopped the med.
It's funny - I am having alot of issues with the NHS for myself and my daughter, but with Andrew they have been fantastic. Once he got his Crohns' diagnosis, the service has been really good, however I did have to fight for a year and a half to get to that point.

 

[Ands]

Sascot I know what you mean about the NHS when it works it works well but there are many times it doesn't! Our local trust couldn't diagnose Joseph but when they finally agreed he needed to be transferred to a specialist centre things were fantastic.

Joseph been now taken off all meds and we are waiting and seeing...... As his reaction was so poor to the aza they are reluctant to try anything else at the moment and see how long to first flare. My husband and I are ok with this way forward but Joseph is finding it hard to come to terms with. His personality is such that he likes things 'black' or 'white' and now he seems to be in a very 'grey/unknown' area and is finding it hard. He currently has a cold/cough and is paranoid that he has ulcers in the back of his throat, we can't see any and it is likely to be a normal sore throat. When I spoke to him this morning he broke down in tears and said he was worried it was the Crohn's coming back.

He was diagnosed in July so I guess it is still part of him coming to terms with the condition. It is heart breaking to see him so worried.

Xxx

 

[DustyKat]

It's good to hear they stopped the meds. But the waiting and watching can be just as harrowing and I imagine that is what Joseph is feeling, bless him. :hug:

I can well understand that need for something tangible, something that can envisaged as way of gauging how things are going. The unknown is an awful place for me as my imagination runs riot! As I have said many a time (as a parent)...an imagination is wonderful thing! Except when you have a child with Crohn's!

How often will the be monitoring his bloods?

Do you get a copy of the results?

I wonder with him being a black and white lad if seeing the results and tracking progress himself would give him a focus?? I know that can be fraught with danger if the results worsen and he isn't ready for that. But if he does 'like' that sort of thing he may not worry about things so much if he can see things improving.

My son, although older at the time, is very much a black and white logical thinker. He was never one for anything medical and I often feared telling him when his bloods worsened but he looked on things very matter of factly. Of course he was always happiest when his bloods were good but when they weren't he did find some solace in the fact that they reflected what he was feeling and so there was a 'reason' why he felt the way he did.

Either way, it is early days for him and it is scary. Have a look through these two threads, you may find something that is helpful...Books and The Emotional Needs of a Child with Crohn's

Good luck!

Dusty. xxx