Saw the consultant today.

[Floridatilly]

I had such a fascinating and educational consultant appointment today with Mason. So I thought I would put it on here because others may find it interesting too. Mason has severe active Crohn’s starting in his mouth, all the way through to his anus. Juvenile arthritis, autism, selective mutism and dyslexia.
Mason’s Crohn’s consultant is amazing, like out of this world amazing. He does fancy talks and things all over the world.
Arrived for our appointment today and the consultant himself came out and asked for Mason (he hadn’t even been weighed etc). He was invested in seeing Mason today and asked my permission to ask him/me questions etc as he is currently involved in research on autism and gut problems. But not looking at high functioning autism (Mason isn’t high functioning)
So it turns out Mason’s list of issues are all connected and there is a massive study going on regarding this.
IBD (Crohn’s and ulcerative colitis) is either :
Mild
Mild & active
Moderate
Moderate & active
Severe
Severe active

People with autism are more likely to suffer from severe- severe active (Mason is currently still severe active) IBD is generally diagnosed later due to autistic’s high pain threshold when the disease is already severe.
Therefore there is a higher risk if arthritis due to all the inflammation in the body.
Dyspraxia is more common in people with autism and dyspraxia can cause bio mechanical pain. Cause and effect of dysfunctional walking and movements puts extra pressure on certain joints causing inflammation. Therefore causing problematic pain for people suffering from arthritis (making arthritis worse)
So its a vicious cycle really. But it also answered so many of my questions and worries.
Its also more difficult to get autistic people out of a flare because they have such a limited diet as this negatively effects the bacteria in the gut. Plus its more complex with Mason due to his allergies 🙈
All in all, I feel really positively educated today. Mason’s health issues are not anything I have done wrong, mum guilt is a terrible thing.
Dr Auth also said that Mason can’t return to school while the risk of chicken pox is still high and to only send him back in September 😳
Medication to stay the same - Azathioprine, infliximab infusions, steriods.
No bowel removal yet.

[EssexSue]

Originally Posted by Floridatilly

I had such a fascinating and educational consultant appointment today with Mason. So I thought I would put it on here because others may find it interesting too. Mason has severe active Crohn’s starting in his mouth, all the way through to his anus. Juvenile arthritis, autism, selective mutism and dyslexia.
Mason’s Crohn’s consultant is amazing, like out of this world amazing. He does fancy talks and things all over the world.
Arrived for our appointment today and the consultant himself came out and asked for Mason (he hadn’t even been weighed etc). He was invested in seeing Mason today and asked my permission to ask him/me questions etc as he is currently involved in research on autism and gut problems. But not looking at high functioning autism (Mason isn’t high functioning)
So it turns out Mason’s list of issues are all connected and there is a massive study going on regarding this.
IBD (Crohn’s and ulcerative colitis) is either :
Mild
Mild & active
Moderate
Moderate & active
Severe
Severe active

People with autism are more likely to suffer from severe- severe active (Mason is currently still severe active) IBD is generally diagnosed later due to autistic’s high pain threshold when the disease is already severe.
Therefore there is a higher risk if arthritis due to all the inflammation in the body.
Dyspraxia is more common in people with autism and dyspraxia can cause bio mechanical pain. Cause and effect of dysfunctional walking and movements puts extra pressure on certain joints causing inflammation. Therefore causing problematic pain for people suffering from arthritis (making arthritis worse)
So its a vicious cycle really. But it also answered so many of my questions and worries.
Its also more difficult to get autistic people out of a flare because they have such a limited diet as this negatively effects the bacteria in the gut. Plus its more complex with Mason due to his allergies 🙈
All in all, I feel really positively educated today. Mason’s health issues are not anything I have done wrong, mum guilt is a terrible thing.
Dr Auth also said that Mason can’t return to school while the risk of chicken pox is still high and to only send him back in September 😳
Medication to stay the same - Azathioprine, infliximab infusions, steriods.
No bowel removal yet.

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Oh my darling I had no idea you felt guilty, why would you do that to yourself? X
Thank you for sharing with us I didn't know any of this.
You have shamed me I will stop moaning about my celiac disease right now.
Take care of yourself and that precious boy. X

[FamilyDisney]

No need for mum guilt, though we all do it. I think you sound a wonderful caring Mum who would do anything for her children. Take care and keep us posted.

[sam7]

I knew from my friend whos son is autistic that autism and bowl issues are connected, I also knew that autism and dispraxia are connected (again have a friend who's son has both of these conditions. The fussy/faddy diet and bowl/digestive issues does make so much sense when I think about it really. Didn't know there was a connection with arthritis though - so that was interesting.
I think its normal (but totally wrong) for parents to blame themselves when their children have medical conditions which is sad. From what I have read you do an amazing job as mummy to your children and they are lucky to have you.

[Bootrip2]

It is great that you have an understanding consultant, he sounds really great! When someone takes the time to explain it all with you suddenly it all makes sense!

[Loopylooloo]

This brought tears to my eyes, you have been through so much, its wonderful to know Mason has such a fantastic consultant taking care of him.

[silverfox46]

So pleased for you, that was some consultation 💕
Love to you and hugs for Mason

[Blue nose]

Thank you for sharing FT. An interesting read.

Everyone on here knows you are an amazing mum that puts her kids before absolutely everything. It's easy to see from your posts.

No need for mum guilt, but you do because you're a good mum. 👍

[Bouncing Tigger]

Gosh you should never ever feel guilty, it’s so obvious from all your posts how much you do. What a totally amazing consultant, you must be so relieved to have him and to get answers.

[cartoonp]

Thinking of you hugs to Mason and you all xx