Another update on Mason

[Floridatilly]

Sorry again in advance for my doom and gloom, I am feeling pretty fed up, I am really trying to be positive but its never ending at the moment.

A bit of history, I think I may have already explained this, but my memory is shocking. Apologies if I am repeating myself.
Pre Crohn’s diagnosis and pre covid, Mason’s teacher expressed concerns about Mason’s co ordination, fine and gross motor skills, balance and social communication. In reception the teacher wanted to keep an eye on things, more concerns in year one and extra support given, definite concerns in year 2. The SENCO sent off for Mason to be assessed by a OT etc.
Roll on the beginning of 2020 and Mason started to become poorly then lockdown so all appointments got cancelled.
They have now gone ahead and Mason is awaiting a panel decision on autism or ADHD CO- morbid.

So with that in mind. His Crohn’s consultant rang us last week and said that Mason has juvenile arthritis. This is caused by the Crohn’s as the inflammation as spread in his body. His inflammatory markers in his bloods are high. Mason has been suffering from really bad pains in his hips, knees, ankles. Struggles with stairs and cries in pain after 10-20 min walk. Some days he can’t walk at all.
The Azathioprine and infliximab infusions and steriods will apparently treat this along side his Crohn’s disease.
He has had his first pysio appointment today and had a full assessment which didn’t go well. It was all a little too much to take in so I will understand more when she writes the report. Regarding his co ordination and balance he is very bad, like age 2. He couldn’t follow instructions and had to be manually adjusted into positions. He couldn’t complete the simple exercises, couldn’t walk in a straight line.
She said his leg joints were hot and inflamed and it hurt him when she tried to manipulate the joint movements. She rang someone to organise a fitting for a wheelchair (hopefully for short term use) because he can’t go out anywhere and she doesn’t want us to push him too much until the inflammation in his joints is more controlled. I didn’t really want to accept the wheelchair but she insisted and explained that even if he used it for rests in between walking (walk for 5 mins, rest in chair for 10 mins etc) at least he can get out as he is very down at the moment.
Still no idea of when he can return to school. So Mason is stuck in with me every day while I am trying to force him to complete his homeschooling, take medicine, help him with toilet etc its just me and him with no light at the end of the tunnel.
I know there will be, but it doesn’t feel that way at the moment. I feel so sorry for him.
He still looks so chubby and my heart broke during the assessment because he was flopping and flapping around. They are concerned about his field of vision and depth perception so he needs to see an eye specialist (he already has very poor eyesight, has his prescription changed every 4-6 months) Then he was crying in pain and begging to go home. Poor lad needs a brake.
We are supposed to be going to florida in July for 5 weeks. No idea if that will go ahead or if he will be well enough to go anyway.
He has his next infliximab infusion on Friday so hopefully we will see some improvement soon 🤞🏻🤞🏻🤞🏻

[Gryff]

Sorry to here this it just seems 2 steps forward and 3 steps back for you right now
I know you don’t want to accept the wheel chair but if it lets you all go out together then it’s a must for his mental health and yours I’ve been there as an adult sometimes
You just have to admit things and take whatever is available
Team Dibb is right behind him

[sharonb]

I really don’t know what to say, but poor Mason is really having a hell of a time as well as you and the rest of the family. I really hope that he can soon start to feel at least a little bit better than he is at present. I just want to say you are doing an amazing job I know it must be heartbreaking and exhausting but he’s lucky to have an amazing mum. Hopefully it won’t be long before you are telling us all he’s turned a corner and is starting to feel even slightly better.

Sharon

[Loopylooloo]

I am so sorry, this is such a lot for you all to be dealing with, no wonder you are struggling with it. I really hope things get easier for Mason, bless his heart, and that you get to Florida soon for a much needed break for all of you. Xx

[EssexSue]

Originally Posted by Floridatilly

Sorry again in advance for my doom and gloom, I am feeling pretty fed up, I am really trying to be positive but its never ending at the moment.

A bit of history, I think I may have already explained this, but my memory is shocking. Apologies if I am repeating myself.
Pre Crohn’s diagnosis and pre covid, Mason’s teacher expressed concerns about Mason’s co ordination, fine and gross motor skills, balance and social communication. In reception the teacher wanted to keep an eye on things, more concerns in year one and extra support given, definite concerns in year 2. The SENCO sent off for Mason to be assessed by a OT etc.
Roll on the beginning of 2020 and Mason started to become poorly then lockdown so all appointments got cancelled.
They have now gone ahead and Mason is awaiting a panel decision on autism or ADHD CO- morbid.

So with that in mind. His Crohn’s consultant rang us last week and said that Mason has juvenile arthritis. This is caused by the Crohn’s as the inflammation as spread in his body. His inflammatory markers in his bloods are high. Mason has been suffering from really bad pains in his hips, knees, ankles. Struggles with stairs and cries in pain after 10-20 min walk. Some days he can’t walk at all.
The Azathioprine and infliximab infusions and steriods will apparently treat this along side his Crohn’s disease.
He has had his first pysio appointment today and had a full assessment which didn’t go well. It was all a little too much to take in so I will understand more when she writes the report. Regarding his co ordination and balance he is very bad, like age 2. He couldn’t follow instructions and had to be manually adjusted into positions. He couldn’t complete the simple exercises, couldn’t walk in a straight line.
She said his leg joints were hot and inflamed and it hurt him when she tried to manipulate the joint movements. She rang someone to organise a fitting for a wheelchair (hopefully for short term use) because he can’t go out anywhere and she doesn’t want us to push him too much until the inflammation in his joints is more controlled. I didn’t really want to accept the wheelchair but she insisted and explained that even if he used it for rests in between walking (walk for 5 mins, rest in chair for 10 mins etc) at least he can get out as he is very down at the moment.
Still no idea of when he can return to school. So Mason is stuck in with me every day while I am trying to force him to complete his homeschooling, take medicine, help him with toilet etc its just me and him with no light at the end of the tunnel.
I know there will be, but it doesn’t feel that way at the moment. I feel so sorry for him.
He still looks so chubby and my heart broke during the assessment because he was flopping and flapping around. They are concerned about his field of vision and depth perception so he needs to see an eye specialist (he already has very poor eyesight, has his prescription changed every 4-6 months) Then he was crying in pain and begging to go home. Poor lad needs a brake.
We are supposed to be going to florida in July for 5 weeks. No idea if that will go ahead or if he will be well enough to go anyway.
He has his next infliximab infusion on Friday so hopefully we will see some improvement soon 🤞🏻🤞🏻🤞🏻

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I am so sorry to read this, I could cry for him (and you) I really could. X

[Orlando 2004]

I'm so sorry that Mason has even more problems. Hopefully now it's been recognised though he will get the help and treatment he needs to make him feel a lot better. Take care and don't worry too much about the schoolwork. Xx

[jndt]

He certainly has a lot going on at the moment. You and he must be exhausted.

I don't know much about his other conditions but my youngest son has autism. My son has a very high pain threshold so Mason could have too which is why he has managed for so long with the pains bless him.

Fingers crossed now the medics are aware they can help him.

[captain-codeye]

So sorry to hear this, I know it’s all so much to take onboard, but there is light at the end of the tunnel, it’s a slow horrible process but the right treatment is there, they just need to find it.

[Michyloulou]

Poor Mason, that is just so much to deal with. Hopefully once they get the meds sorted this will alleviate his pain and make him a lot more comfortable. The use of a wheelchair is a very scary prospect for children and parents (I work with a little boy who uses a walking frame but also has a wheelchair at school and I know his mum was really torn when OH & physio first suggested the wheelchair as she worried it would take his independence away - however the aim from physio perspective is to give him more independence longer term when he is older). Also my late father, through ill health gradually went from using sticks to a frame and then to a wheelchair- he really struggled as an adult to accept this, so I do think (especially with the child I work with) that now he’s used to his wheelchair it can be viewed as just an alternative for those days when he’s really too tired to use the walker, and gets him used to the controls etc (we practice in an empty playground, going around cones etc. Pre Covid we went around the school so he could learn to negotiate doorways & obstacles, but with ‘bubbles’ this isn’t possible at the moment- although we’ve now been out of school (acccompanied by his Mum) as obviously negotiating traffic, uneven pavements etc is a whole other level). Regarding Florida, i’m sure that lovely heat will do his arthritis the world of good, and if you have a wheelchair he’d be able to rest when he needs to.

[Tinkerbell]

So much to deal with at such a young age. Bless you as all xxx