Vasculitis UK
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Parents meeting at school

Hey all, hope you all had a nice weekend.

This is a tough one, my son Harrison has found it difficult to settle at school & like most children he likes to make his friends laugh. He's a comedian!

His low mood has caused a concern for all of his teachers. He's 13 years old & I am aware of his mixed emotions & hormones but the saddest part about it is. He's been extremely low because of.. "my health"

We normally talk about anything & everything. But hes so fearful that something bad is going to happen to me. He thinks he's going to get a call to say I have died... 😭😭

If it effects me.. it effects him. & to know he's so afraid makes me feel terrible., he's failing in all his classes, & the only thing he's interested in is me..

i feel like it's my fault.. & I've failed as a mother.

He's been seeing a councillor at school once a week, & today I have to go & see his form teacher. My illness has been a battle for me but also it's been a scary time for Harrison. I think I need to put on a brave face from now on & show him that I can play football with him, I can walk for miles to a grassy green spot lay back & look up at the sky. Like we used to. I can go into town & enjoy a shopping spree we can go out to dinner & I will eat all of my meal.

I'm emotional today because harry/Harrison is my universe & i do not want him suffering because of me.. the quicker I get to Birmingham the better because being here in this room, waiting & wondering baring a heavy load on my shoulders & feeling like Harrison's worst nightmare.

If anyone else has been through or are going through something like this any comment would be most appreciated. ♥️

From a loving mother to another x

12 Replies

Hi Laura, you sound a wonderful mum and feeling guilty because your too unwell to do the things you and Harrison enjoy together is part of it. Harrison is also reaching Puberty which is a difficult time for him with all those hormones rushing about. I read a very interesting article on puberty which explains a bit how testosterone affects boys! Their personality and moods. My daughter is having problems with her son. I looked on google. I can't remember the name of the article, sorry.

Why not do different things together like a film night at home with popcorn etc., whilst your so unwell. You probably have. Once your condition is under control you will feel well enough to do these things again.

It's been a long and difficult road for you and I do hope you will get your appointment with Birmingham very soon.

Take heart Laura things will get better.

Best wishes Ludo

1 like

Hi Ludo,

Awe thank you, very kind. Yes your very right, puberty is hellfire! I will have a look on google for some self help, I'll do Anything to help him. We have our cake baking weekends, & we both sing when I'm feeling ok too. We're both into photography so little by little we're getting out more even if it's sitting in our front garden next to the river taking photos. My appointment is in the post, & have the copy of the letter from my doctor today.. they always make you out to be just fine.. ANCA positive. & nothing to really worry about..

hmm but it's on it's way to me.. sooner the better.

How did it go when you first arrived at Birmingham ? Was it a slow process & were you looked after well x

Thank you Ludo 🤞🏻


Hi Laura, I was seen promptly at Birmingham and put on the correct medication which gradually bought me into remission. I was seen weekly then 2 weekly for a while then when I became more stable the time between visits was longer. I see them every 3 months now at their vasculitis clinic which is held on a Thursday afternoon. I can honestly say they saved my life with their knowledge, expertise, interest and research.

I'm sure you will experience the same, and once in remission you will start to feel human again.

Aren't those letters frustrating! Luckily Birmingham will recognise the importance of your symptoms and ANCA result.

Good luck, please let us all know how your consultation goes.

Take care.

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That's so refreshing to hear Ludo. I'm so so glad you were seen promptly & treated with so much love & care that you deserve. Sorry for all the questions, but how did you deal with the medication & side effects at first.? I struggle with tablets due to my GORD.

I just hope they can Inject me, or I can crush them. I can't wait to feel human again, I'm glad your in a stable condition now & you still get good follow ups. Awe that's wonderful ! They sound wonderful !

I've had a stomach issue god knows what's going on but I feel better if I don't eat, when I start eating & time after I'm in so much pain. Never ever had it before.

I really just don't feel well, & loosing more weight. I want my curves back haha!

I will most definitely keep you posted, thank you though your comments mean a lot



Hi Laura, I was eventually referred to Birmingham in 2005 and commenced on Mycophenolate and prednisolone tablets which have bought me into remission. I tolerated them well fortunately. There are new regimes of medication now, often given by infusions. I'm sure if you share your concerns with the doctors they will be able to reassure you and find medications which suit you best.

Your stomach pains sound horrid. I didn't have that. you will be feeling even worse if your not able to eat. Loosing weight is one of the symptoms. I managed to keep my 'curves' sadly!!!

The sooner your seen the better. Hope it's very soon. I'm happy to answer any questions if it helps.

Wishing you well. X

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Hey Ludo, hope the sun is shining where ever you are 🌞I'm SO happy to hear your in remission.. wow! I.. have read some of the treatments cytotoxic.. I'm scared a little, but I need a better quality of life, & to exist like this is not a life at all. So any treatment given I will bite the bullet & the goal.. remission !!

Yes not being able to eat makes me feel worse. So much weaker than before, I've been sick this morning after just having a few sips of water. It's not a virus, I've just got over the flu.. it's just acidic & painful.. along with my exhaustive Vasculitis symptoms.. but hey ho I will soldier on 🤞🏻

my son goes on holiday tomorrow - a week in Barcelona- football tournament! So hopefully this week away from home, he can have a think about everything that's happened at school & home & hopefully come back with a brand new attitude.. hopeful. He's gunna have an awesome time, Sun sea sand & football.

I look forward to Birmingham it's like a lighthouse. I will keep you posted Ludo.

& thank you ever so much from the bottom of my heart for all your messages encouragement & support. X


Hi Laura, what an exciting time your sons going to have. Lucky boy. Hope that you can spend that time resting. I was wondering if the nausea may be related to any pain killers you may be on. I found co coda oil, tramadol and oramorph really made me feel sick. If this is the cause your GP can give you tablets to prevent this. In the meantime your chemist may be able to suggest something. Alternatively ginger is good for nausea. Ginger tea or Ginger beer not the a diet version though. Hope it helps.

You have to be careful not to become dehydrated especially in this weather. If you can't keep any fluids down then I should ring 111 for advise.

Take care x


Hi Laura

Your post has really struck a cord with me, I will get in contact in more detail over the next few days when I have the time to compose a detailed message.

It sounds like we share similar feelings.

Take Care of Yourself


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Hi Jenny, thank you for your message, I look forward to hearing from you. You too. X


Just sent you a PM x


Thinking of you.. it does impact every area of your family life. Try and stay positive I know its hard and I look at myself and think yes I should be heeding my own advice more. You are a good mum and things will get better for you

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Hi Johanna, thank you so much for taking the time to comment. The meeting went well, My son was present. A few tears & giggles. A nice balance. I'm doing my best to stay positive, just feel like I have the weight of the world on my shoulders. But Harrison is my priority & making his frown turn upside down is my goal. Thank you x


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