Looking for answers...

[positivemum]

This is the only place I know where someone might offer a glimmer of hope.
My 16 year old had a good year last year but it has all gone downhill. He was taken off Aza 14 months ago and is on no medication as his WBC is too low so he has completed the polymeric diet twice, each time for 8 weeks followed by combining some shakes with food. This was working but he had some poorly times. He is now 2 months off full shakes and is starting to go downhill again.

We are having scopes on feb12th but he is in such an important year and missing a lot of school. His main issue is the sudden need for the toilet and the impact any form of stress is having on him.

Anyone got ideas for the urgency?
Anyone got ideas about the stress?

We saw a psychologist who thought he was in control and very mature and together about everything and felt she would be of no help. He now wants help for the stress.

feel like I am in a never ending cycle of looking for answers

Oh and as he had to come off Aza ca he have 6MP? I am not keen on him taking it.

Thanks in advance :frown:

 

[Jmrogers4]

They are similar drugs but I believe they are processed slightly different through the liver, from what I understand 6MP is processed a little easier then Aza.
What about Methotrexate? Sounds like he needs something to keep the IBD in check.
We found once the disease was under control the stress lessened and it wasn't such in issue but when he wasn't feeling well it's just a giant circle. Didn't feel good so would stress about the symptoms which would make the symptoms worse and around and around.

 

[Sascot]

Sorry to hear that. My son couldn't tolerate Aza and has been on 6mp since with no issues. I believe our next step would have been methotrexate if the 6mp was no good

 

[my little penguin]

I understand pulling the Aza for low wbc
By why no meds since he has flared so much this year.
I understand meds are scary but really things do not sound like they are under control at all.
What meds did his Gi offering place of Aza?

Mtx might work ...
Ds had to stop 6-mp due to liver issues
Then switched to Mtx .
Gi didn't want Aza since it was similar to 6-mp

The hope or light at the end of the tunnel would be a good maintence med to get him back into a good place

Hugs

 

[positivemum]

Thank you everyone. His GI didn't replace his Aza with anything. He was well till it left his system completely and then has had issues. We used the shakes (EN) to manage it but he does need a medication. They are all just so worrying in terms of side effects.

 

[Catherine]

How low are his white cells? Are they comming up?

 

[positivemum]

If I remember rightly around 4.1 and neutrophils were low too. Been this way for months and not really going up. Immunologist ok with it and may do bone marrow biopsy to check he is making his cells correctly. Says it may be leakage from gut. Problem is it limits medication options

 

[Catherine]

Have you had a second opinion?

 

[positivemum]

No We haven't had a second opinion. My DS is happy at the hospital so it is hard to see another consultant. However, when he is like this I feel like a neglectful parent as I feel I should be doing something but am helpless as to what!

 

[Maya142]

What does his GI say about his symptoms and trying another maintenance medication? Many kids tolerate MTX just fine - my older daughter is one of them (some nausea, but it's really manageable).

 

[positivemum]

6MP mentioned. Mtx not widely used here in UK.

We will now have to have the scopes before any medication is discussed. He has been up and down in recent months after a pretty good year hence why no other meds yet.

 

[my little penguin]

But if he has had repeated flares that would be evidence of recurring inflammation which leads to damage or scarring etc....
I have seen more than a few studies on Mtx in the UK .
It might be worth asking and making a cheat sheet for the Gi
A few bullet point of the flare dates and symptoms
Sometimes docs forget or can't read the whole file prior to an appt

 

[my little penguin]

http://www.patient.co.uk/health/crohns-disease-leaflet
Leaflet on crohns meds in UK including Mtx .

 

[my little penguin]

http://www.bsg.org.uk/pdf_word_docs/meth_ibd_dr.doc

And here

 

[my little penguin]

If your symptoms flare up twice or more during 12 months or return when your steroid dose is reduced, further treatment may be necessary.
In these cases, medicines to suppress your immune system (immunosuppressants) may be combined with your initial medication. Medicines called azathioprine or mercaptopurine are most commonly used.
These medicines aren't suitable for everyone, so a blood test should be carried out to check if you can use them. If they are not suitable, an alternative immunosuppressant medication called methotrexate may be used.
Side effects of these immunosuppressants can include:
nausea and vomiting
increased vulnerability to infection
feeling tired, breathless and weak, which is caused by anaemia (a decrease in the number of red blood cells)
liver problems
During the course of medication you will have regular blood tests to check for serious side effects

From nhs choices

 

[my little penguin]

http://www.nhs.uk/Conditions/Crohns-disease/Pages/Treatment.aspx

Opps forgot the link


So as you can see
Mtx is very available
Can you schedule a second opinOn not to change GIs just get a fresh set of eyes and point of view
That helped us immensely and Ds still sees his original Gi