ADULT CARE
What to expect.
To parents with a chronically ill child who is going
through the transitional stage from paediatric to adult care.
Part one Brace yourself.
From birth Molly has been poorly.
At just 6 weeks old she was allocated a paediatric consultant who cared for all of
her needs.
All of them collectively.
Because of course she is ONE person. A small one granted but yes all of her problems were collectively
inside her body!. Obviously as a human ( if any aliens
are reading),she is all bound together in the form of a whole. I'm sure there is a mathematical formula I could use here.
Small child = lungs + heart + all innards + skin + eyes + ears + brain + bones + limbs + head + cute face + all other gooey bits. = 1
So as things progress through the journey of life with a poorly child, other consultants were introduced. To Help the mother ship controller consultant . She called upon them to help put the wobbly, unknown problem areas of her, back together. The bits of broken jigsaw that other consultants specialised in.... * refer to the maths.
So as things progress through the journey of life with a poorly child, other consultants were introduced. To Help the mother ship controller consultant . She called upon them to help put the wobbly, unknown problem areas of her, back together. The bits of broken jigsaw that other consultants specialised in.... * refer to the maths.
This enables the controller
consultant to look at your human as 1 part.... Just one.
SO You end up with a tree!
This is our tree. From 0 to 19
SO You end up with a tree!
This is our tree. From 0 to 19
* first tree below
At the centre of the tree is My Molly.
'The enigma' the child who baffles medical science. The child who can run about the playground like a crazy squirrel with a cold one minute, and then BOOM! The next be lying in an oxygen tent with double pneumonia. (She goes down quickly was soon written in red on her notes) :/
She is interesting. She is a challenge. No one can fathom her out.
The branches, which I tell you were very extensive by age 14 were full of amazing people. Call us the Mother oak tree of all oak trees which ever existed on planet earth!
Well they all confer with the king branch the Mother trunk! And this would be Dr J !! Molly's paediatric consultant. We shall call her 'The J Dawg#'
Now despite the fact molly was undiagnosed for 14 years. The J Dawg did her very best for the first 11 years of her life. She saw her in clinic every 3 months. She oversaw her care in hospital on the many occasions she was admitted. She spoke at length to colleagues about the complexity of Molly's condition & the baffling symptoms she presented.
The thing was Molly presented with primarily a bad chest so this was the main concentration of her care. J Dawg would sometimes just look at us in clinic and shake her head at the immensity of molls recurring illnesses.
At the centre of the tree is My Molly.
'The enigma' the child who baffles medical science. The child who can run about the playground like a crazy squirrel with a cold one minute, and then BOOM! The next be lying in an oxygen tent with double pneumonia. (She goes down quickly was soon written in red on her notes) :/
She is interesting. She is a challenge. No one can fathom her out.
The branches, which I tell you were very extensive by age 14 were full of amazing people. Call us the Mother oak tree of all oak trees which ever existed on planet earth!
Well they all confer with the king branch the Mother trunk! And this would be Dr J !! Molly's paediatric consultant. We shall call her 'The J Dawg#'
Now despite the fact molly was undiagnosed for 14 years. The J Dawg did her very best for the first 11 years of her life. She saw her in clinic every 3 months. She oversaw her care in hospital on the many occasions she was admitted. She spoke at length to colleagues about the complexity of Molly's condition & the baffling symptoms she presented.
The thing was Molly presented with primarily a bad chest so this was the main concentration of her care. J Dawg would sometimes just look at us in clinic and shake her head at the immensity of molls recurring illnesses.
Baffled!.. we were all baffled.
Moll was 6 when she started seeing Dr H upon the J Dawgs referral. Dr H was a genius!! The head in his field of chest / lung and respiratory care. Good one Dr J ! Dr H was a very welcomed addition to our tree.
There was one thing concerning Dr H which always sticks in mind. At 7 or 8 after he had searched high and low only discovering some floppy tubes in Molly's lung. He came to this conclusion. That while Moll did appear to now have a chronic lung condition it was secondary...TO SOMETHING ELSE!! (Never was a truer observation made although diagnosis was still 6 years away.
So the tree grew further. It blossomed into a magnificent tree of amazing doctors, specialists nurses, physiotherapists and consultants of all kinds. Still at the centre my Molly. Still poorly.
Well at the age of about 11 The J Dawg had held on to Moll as long as she could and so passed us to the general paediatric consultant for older children. He also specialised in chronic chest problems. The tree kept on growing, and growing, unfortunately molly did not. She was now 11 but in age 7 to 8' clothes. 😥 Because I'm small (5ft) it was not seen to be that much of a problem. 😲 she was small because I was small ( big mistake) always be growth aware. I can understand this in a way because the tree branches were concentrating on keeping her alive. The bouts of pneumonia, chest infections, chronic asthma And now allergies to antibiotics were rife 😥
So to the tree was added immunology. Molls immune system surely was faulty, she was still poorly every 3 to 4 weeks.
Another day another branch. Branches branched off of branches and branches branched off of them.
Moll was 6 when she started seeing Dr H upon the J Dawgs referral. Dr H was a genius!! The head in his field of chest / lung and respiratory care. Good one Dr J ! Dr H was a very welcomed addition to our tree.
There was one thing concerning Dr H which always sticks in mind. At 7 or 8 after he had searched high and low only discovering some floppy tubes in Molly's lung. He came to this conclusion. That while Moll did appear to now have a chronic lung condition it was secondary...TO SOMETHING ELSE!! (Never was a truer observation made although diagnosis was still 6 years away.
So the tree grew further. It blossomed into a magnificent tree of amazing doctors, specialists nurses, physiotherapists and consultants of all kinds. Still at the centre my Molly. Still poorly.
Well at the age of about 11 The J Dawg had held on to Moll as long as she could and so passed us to the general paediatric consultant for older children. He also specialised in chronic chest problems. The tree kept on growing, and growing, unfortunately molly did not. She was now 11 but in age 7 to 8' clothes. 😥 Because I'm small (5ft) it was not seen to be that much of a problem. 😲 she was small because I was small ( big mistake) always be growth aware. I can understand this in a way because the tree branches were concentrating on keeping her alive. The bouts of pneumonia, chest infections, chronic asthma And now allergies to antibiotics were rife 😥
So to the tree was added immunology. Molls immune system surely was faulty, she was still poorly every 3 to 4 weeks.
Another day another branch. Branches branched off of branches and branches branched off of them.
Although I'm seen as an activist mother now, back then I was totally trusting and happy about molls care. It was not by my asking that the tree was growing bigger. I was not a fussy
mother. The efforts were the efforts of the mother controller J Dawg who I trusted implicitly.
Lets fast forward a few years. Moll is 16 her tree is massive they have a diagnosis. Its a scary diagnosis a life threatening diagnosis Hypopituritsm, with Adrenal insufficiency. DR H GETS MY STAR BRANCH AWARD! He and J Dawg knew there was an underlying condition. The problem was it was a 1 in 100,000 condition. No wonder our tree was so huge.
It took 7 further years to find this from the referral to immunology!
Lets fast forward a few years. Moll is 16 her tree is massive they have a diagnosis. Its a scary diagnosis a life threatening diagnosis Hypopituritsm, with Adrenal insufficiency. DR H GETS MY STAR BRANCH AWARD! He and J Dawg knew there was an underlying condition. The problem was it was a 1 in 100,000 condition. No wonder our tree was so huge.
It took 7 further years to find this from the referral to immunology!
They found it! They saved her life. Lizzie the phlebotomist was the nicest blood
taking lady I ever met I also give her a star branch award we even hugged when moll left immuniology, i thanked her and her department for actually saving her life.
So My Baby
the all in one human with the Massive tree had been walking around her whole life with a life threatening illness. But that is a different matter of which I have ranted
about many times.
Part 2
* make a note big changes happen now.
So here we are 16.
Almost over night the branches (which were fading in numbers a little now) start talking in clinic to my human and not me!😮
For 16 years myself and the branches have only really spoken to each other. I have relayed Molly's history to different branches so many times I could do it in my sleep.
It is the weirdest thing. The branches will do this!! They will do it to your child when they hit 16. What ever condition or stage of emotional age they are they will do this. The first time it happened Moll was sent in to massive panic stations. (She wasn't expecting to have to actually speak. It threw me too) She looked at me in total fear as though someone had just asked her to complete a masters degree in history. To be fair its not dissimilar 😥 pale faced and scared looking I felt so bad for her. I'd just take over the chat at this point.
By 18 I was still doing this and the consultants probably just got the impression that I was the biggest fuss pot with the biggest
gob in the entire universe. The thing is I've built my hopes on every single consultation molls has EVER had. Still do. There is no end to my hopes and expectations
I've literally met 100's of branches. I think my over the top optimism
has what's got me through this 🤔 I
feel I'm possibly delusional in my thoughts, may be that's also a medical condition.
Part 3
The biggest part of this story
The Child to adult transition.
To be fair this part is not long.
We all arrive at hospital. There is the paediatric consultant, and the adult consultant together in their covern ... i mean consultation room 😠
In summary they stated there will be no more communicating with any other medical professionals. Unless its to do with hormones.
Its amazing!!! Moll hits 19 and the one whole human I thought she was for 19 years has erm suddenly separated! Its all a bit Dr who! (He's not on my list of branches unfortunately)
Her pituitary gland, adrenal glands
her thyroid and her growth hormone production have suddenly parted from the the mother board ...
To be honest I felt a bit like a fool had I been using this magnificent branch IN FRONT OF ME as my local gp for 5 years? this was how they were making me feel.
To be honest I felt a bit like a fool had I been using this magnificent branch IN FRONT OF ME as my local gp for 5 years? this was how they were making me feel.
I didn't like the cut of their jib! and the adult new branch
was annoyed by that 😮
It became very apparent that the rest of molls body was now to be looked after by the gp THE ONE THAT ALWAYS SAYS... ASK HER CONSULTANT 🤔 what is this? No main trunk branch anymore? the days of the J Dawg are long gone. Molly basically has no consultant to look after her as a whole person. Like they said there is no consultant in the world who could specialise in Molly!!. I got the impression they thought it was something I had done when they told me she'd already seen every consultant in the whole universe. 😠 Like id been the one instigating the branch additions, ALL OF THESE YEARS. , like i am the most pushy mother who ever lived.
It became very apparent that the rest of molls body was now to be looked after by the gp THE ONE THAT ALWAYS SAYS... ASK HER CONSULTANT 🤔 what is this? No main trunk branch anymore? the days of the J Dawg are long gone. Molly basically has no consultant to look after her as a whole person. Like they said there is no consultant in the world who could specialise in Molly!!. I got the impression they thought it was something I had done when they told me she'd already seen every consultant in the whole universe. 😠 Like id been the one instigating the branch additions, ALL OF THESE YEARS. , like i am the most pushy mother who ever lived.
I felt like telling them that the J Dawg started growing
that tree when moll was a baby and all I've ever wanted was for her to be well. But I didn't, I could feel the chainsaw cutting off all of the branches one by one around us. We were basically told she's seen everyone there is to see and this is it.
My once active unicycling on well days little girl was being given up on. Left in a wheelchair with not much quality of life.
They will be there just to keep her hormones managed but that's it. Goodbye.
We left .... actually they didn't even say goodbye.
So that's it.
The branches have all been sawn off they have all gone. Molly is 19 not cured but in a worse state than she was before. The chainsaw = the adult care system. (new maths)
This is our tree now. (*second tree)
Be prepared.
They will be there just to keep her hormones managed but that's it. Goodbye.
We left .... actually they didn't even say goodbye.
So that's it.
The branches have all been sawn off they have all gone. Molly is 19 not cured but in a worse state than she was before. The chainsaw = the adult care system. (new maths)
This is our tree now. (*second tree)
Be prepared.
All names have been changed to protect the innocent
Paediatric care
Adult care
Janet Butler
Rachel, you have said it just as it is until they reach the magical age of 18, when they are assumed to be an adult. We know our special children with their myriad of health problems are not ready.
Angela Milnes
I was told nothing more could be done for me. I was in a wheelchair. I was told this was it. That to forget any further treatment. I fought. I got the pump and I have a better quality of life.