Undiagnosed and Invisible. Written in 2013.

Did you know that it is possible to be sick and have a list of medical issues as long as your arm and yet still no one can tell you what the problem is.

Did you also know that it is possible to look absolutely fine while still having all of these problems.

F is a SWAN (syndrome without a name) i didn't realise that this was even a thing until i had him and was thrown into this confusing complicated world of fighting for everything.

i'm nearly a nurse and believe in medical science and that people get sick, get diagnosed and get treated. i never thought that their were families out there fighting to get reconised. i see people every day coming through the hospital being treated for problems that has symptoms similar to F's yet we cant get help because we don't know what to treat.

Imagine not being able to tell people what is wrong with your child or why they need to be tube fed or sign makaton.

Imagine having to defend your actions and your childs treatment because your child looks fine.

Did you know that if a child looks fine and has no diagnosis then people presume they are fine and it is the parents fault/problem/issue.

Seems unbelievable in this day and age that such ignorance exists but it happens all the time, sometimes it is heartbreaking like last week after a week in hospital, lots of trouble with F's tummy and tube, lack of sleep and him being so ill  a member of staff at his nursery made an off the cuff remark about well he doesn't need the tube anyway. Followed by the phrase "he looks fine".

Hmmm what he looks like has no bearing of whether his insides work or not but thanks for the opinion that i didnt ask for or need.

Even in hospital it raises eyebrows.

Why is he jejunostomy fed? we dont know.
Why is he so low toned? we dont know
Why is his speech delayed? we dont know
Why does he need a supported chair? we dont know why just because he is low toned and no we dont know why.

then we lead on to filling out forms or answering hospital questions.
What condition does your child have?

Seens like an easy question to answer but when you don't have a diagnosis, all you have are a list of little problems that don't count as a diagnosis and means that you don't get the help that you receive.

Each specialist that you see only deals with the one little problem that you see them for and because they have no underlying diagnosis to work with no one works with the other so each person sees their problem as no big deal and it is left to us, Finleys parents to push for help.

F has two issues that effect his posture and ability to sit and walk. he is both hyper mobile and has hypotonia, this means that his joints are loose and bend more than they should and also he is floppier that normal as his muscles are weaker too.

Together this means that he has a lot of trouble especially when tired to even sit up. those who know him will notice that he can walk and play and sit up ok but once tired he has trouble even holding his head up as he gets so floppy.

This happens much more than it should for a child who is nearly 3 yrs old and leaves him floppy like a newborn and in pain from overdoing it.

Then because we see a different physio for each problem only one problem is taken into consideration at once so we are just left to deal with it and have had to get help from a charity to fund a specialist pushchair and car seat that can deal with F when he is floppy.

If he had a diagnosis of cerebral palsy or something similar he would have a team of people that all address his postural needs and making sure that he was dealt with but because F is just seen as low toned by his physio it isn't felt that he needs a team around him.

Confusing, tell me about it, we feel let down and i struggle with the feelings of being helpless, i also suffer with a confidence crisis that surely if he has a serious problem then they would know what it is so therefore i must be worrying over nothing. This is an awful feeling and one that is rubbish. the hospital see what we see and they are trying to find out the answers to some questions.

This is just something that gets to me every now and then, usually when i have had questions on what is wrong with F,

Some days i feel like typing all his problems into Google and seeing what it comes up with but that doesn't help anyone, Dr Google is one scary doctor.

For now i will go back to what i do every day, i chase doctors and specialists. 20 to be exact. 20 different people involved with my little one and try and get them to talk to each other.

We have to get ready for F to go to school in September so that is more meetings on top of several appointments a week with all of these people to look at their part of F

and hope that one day soon we will get an answer to what is wrong.

Whether we like it or not.

Life after the Gastrojejunostomy

So the last time I posted F was going in to Leeds for his gastro jejunal tube putting in.

The surgery went well. The tube went in without too much trouble and we have been able to get his feeds back up.

He seemed to be great for a couple of weeks. Tummy distending had gone down. The facial rashes and swelling were gone too but they have all been back in the last 6 weeks.

We are giving piriton and citirizine as needed to try and stop any swelling or calm down any flared skin.

He seems to always have a pot belly now whereas he never did before. There isn't always wind in his tummy either.

We do have a referral in to Leeds to see a gastroenterologist to see if they can possibly get to the root of the problem.

The best thing is that we can still feed him while resting his stomach and venting him so he is still getting fed. Xx

Memory lapse or child confusion.

I think lack of sleep and being too busy catches up with you eventually. I had a phone call that showed this up this week.

F has been referred to the Ehlers Danlos genetics service at Sheffield children's hospital and they ring up before hand for an in depth medical history and family tree.

All sounds ok up until now. Well the night before O had been up with tummy pain and needed her wheat bag heating. J had been awake and F's pump leaked all over himself. Leading to a very tired mummy.

So when the poor nurse started asking me questions my memory had gone. I kept forgetting things or getting mixed up on children lol.

I'd tell her about one thing then she would say "anything else" I'd say no, then she asked has he ever had a hernia? I'm saying oh no, not that I ..... Erm actually he does have an umbilical hernia. Then again I said nothing else so she asks if he has had his heart checked and yet again I had forgotten about his tachacardia and ECG's.

She must think that I'm stupid but I did get there in the end with her prompting so hopefully when we get the appointment they will know what is going on with F and see if they can help at all.