6 Years on and still it affects me!

Six years ago our school nurse decided becaase she did not understand the problems we were telling her our children had then they could not possibly exist and we were making them up. Effectively she was acusing us of Munchausen by Proxy.
She persuaded her manager and other lesser professionals that there was a need to investigate us. She contrived to convene a meeting to discuss our parenting of our children where she persuaded others involved with our children to question issues we raised with them about the children.

We were very fortunate at that time that our Peadiatrician knew our children, all four of them then, and knew them well. He also knew us and worked with us to ensure the childrens medical needs were addressed appropriately. He had raised concerns and addressed them for each child, he had also supported us in our concerns and investigated some and suggested we wait and see with others...we always felt he listened and gave good explanations as to why he did not feel it appropriate to investigate some issues and yet investigated others vigorously. On the whole working together we came to diagnosis and agreed treatment or non treatment plans that we fully agreed over.
Thankfully on being approached to attend this meeting he was disgusted! He felt there was no case to answer, no concerns at all about our management of the children's health issues and would not waste his time attending sucha meeting!
We also had a Social Worker who knew us well and who was prepared to speak up on our behalf at the meeting.
Non of the acusations was upheld...there were some riddiculous conclusions arrived at which the Consultant totally overrode ultimately. There was one feeble appology at a much later date from the School Nurse...but the damage was done.

I now question my own judgement all the time. I constantly worry about what others think of my concerns. I permanently wonder if I am overreacting, exagerating, seeing somthing that is not there etc etc. This has the more serious knock on effect of me not knowing when to ask for advice...when to take a problem to a doctor, how to express what I am worried about. It also means I question my decisions and wory about others oppinions of my decisions. It leaves me feeling vulnerable and to a degree puts my children at risk becuase I am worried about voiving my concerns in case I am thought to be paranoid, over reacting, over protective or any of the other labels that woman tried to pin on me!

Yesterday Eve gave school cause for concern, they called me, I was flumoxed..not sure of what to make of how she was! There was nothing to pin point concern! No chesty cough, no retching or diaroeaoh, no temperature...just a child who was more floppy, less reactive, less....just less!
I took her home, to allow her to sleep and hopefully improve but she didnt, her oxygenm requirement increased, her pallor was worsening but still nothing to give me a clue. I did not know who to contact...The Metabolic Nurse at the Children's hospital seemed a good starting point so I frantically tried to find her contact details and three persons down the line I discovered she doesnt work Mondays!
I tried the secretary of the Metabolic Consultant...an answerphone message told me she was on holiday. I gave up on the children's hospital and rang our local ward....engaged engaged engaged...in desperation by now I rang the GP....he was very kind, very concerned but said he was out of his depth! Try Children's ward again....eventually I spoke to a senior nurse there who decided I really ought to take Eve in!
And so at 2.15 we set off to the hospital...arriving on the ward at 3.15 still nothing to really pin point a problem.
I started by saying I could well be over reacting but I did not know what to think, whether there was something further going on or whether this was just Eve! I just was not sure and felt out of my depth.
Nurses were lovely, reassured me I had done the right thing. Temp was marginally raised but apart from Sats being low nothing remarkable.
So we waited for the doctor...and waited and waited. By 8 pm I was losing it! We had been told to bring Eve in she needed to be seen! I had waited until I felt it was unsafe to wait anylonger before seeking advice! The advice was she needed to be seen...so why had she not been seen?
I spoke to the nurse caring for us...appologised that she was the person who I had to vent my frustrations on and assured her it was not her I was angry with but this was unacceptable, I asked her to check Eve's blood sugar as Hypoglyceamia could explain why she was so flat. I also asked her to check her temp again. Temp wsa lower than normal and Blood Sugar was fine. I said that I would now ring David to come and collect us as I could do as much at home as was happening here. There was a lot of nasty infection on the ward and Eve certainly did not need to pick up anything else! Nurse said she would chivvy Doctors again.
I rang David but Joshua told me he was already on his way here. So I started to organise our belongings and in walks Doctor exactly 5 hours since we arrived on the ward!
I told him how angry I was by the wait...of course I remained calm and polite...so was he when he told me he wished he could have seen us earlier but he didnt....odd kind of appology but then an appology was not what I was loking for....and in fairness as the most junior of doctors this was not his fault! He probably was doing the best he could!
Anyway having gone through her history and the recent events he examined her. Chest clear, Ears Clear, bowel sounds present, no temp nothing to really explain the deterioration we were seeing. Could it be urine...have we got a specimine yet? No that hadn't been considered. So he felt it was a case of wait and see if anything showed itself...I asked if we could take equipment to catch a urine home and observe her at home as I really was not ahppy staying in hospital if they were not doing anything I couldn't...thankfully he was happy for that and so I continued to gather what I needed, rading the stock cupboard for the things i ws running out of at home...Nurses were fantastic at finding me what I needed.
And so David arrived and off we went. Eve has slept pretty much round the clock...she did awake enough to give the OT a smile this morning and has enjoyed some TV but is now sleeping the afternoon away again.
Just before lunch I eventually managed to track down the Metabolic Nurse Specialist and offload my frustrations anxieties and fears on her. She was very reassuring that I had done the right thing and was doing a good job of managing this new and frightening territory. Her oppinion is we are probably seeing a general deterioration in Eve's overall condition. She thinks our gut instincts are leading us on the right path. What we are seeing is typical of the pathway we can expect.
I mentioned to her that we had tried giving Eve a low flow of Oxygen whilst on a day out a fortnight ago and had seen that she was mor alert and brighter...she felt that was probably a good move and although she was not qualified to tell us to do that she felt we had stumbled on something that would work for Eve...there is much talk amongst various consultants and therapists about Bipap or trachy and this may just be a step in that direction.
Dispite hearing news that was unwelcome I did come off the phone feeling less anxious....reassured that in this department at least my parenting was praised not critisised, my fears and feeling acknowledged and accepted not riddiculed and dismissed.
However it still leaves a truth that is hard to accept. Eve is not as well as she was this time last week and probably wont get back there.

Yesterday started with a meeting with many professionals to discuss the future of Eve's education. Eve's Statement of Special Educational Needs was completed in June last year. Days before her breathing issues launched us onto this Rollercoaster. 10 months down the road and things are so very different! Eve's needs are very different in some ways. However some needs, her emotional and social needs for instance are the same. How we go about meeting those needs alongside her educational needs is the difficulty. Made the more difficult by her everchanging health needs.
I entered this meeting knowing I was going to have to face up to the schools usual banter of oh she doesnt do that in school. Or Oh she can manage that in School, or she doesnt display that in school.
I was then totally shell shocked and flattened by the words of the Headmaster...someone I really respect and like although we dont always see eye to eye!
This is how he started his presentation.

In our oppinion Eve is well placed within our school. The staff are well trained and well able to meet her needs. However over the last 6-8 weeks we have seen a dramatic degeneration in Eve's general condition. Her stamina is much less and she gets very tired very easily. However we are able to manage that and have the back up of each other to know how to deal with her and the ability to contact others for advice or ring parents to ask advice.

There was no need for me to stress Eve's conditioon, to have to go over what we have seen her lose...here was the Headmaster spelling it out with no opportunity for me to hide behind the possibility of someone telling me I was wrong!

Others at this point acknowledged their views, how they too had seen her losses. And the mood was set, sombre accepting that this was a totally unique review that was going to have to think outside the box to try to give this child the best possible chances whilst she was able to make the most of them.

It was a difficult Review for me...I am used to having to battle for my child to get the best opportunities, I am used to being thwarted to some degree in each of these battles.
Her I am faced with people accepting what I want for Eve, even going further than I had thought of to ensure Eve gets the best chances...and overshadowing the victory was the fact that this is becuase they can see what we have seen...Eve's abilties slipping between our fingers.

It was as we left this review the phone call came.... and even having sat through that thorough acknowledgement that 13 professionals sat around the table with me could see what I could see...I worried was I going to be seen as over anxious........

Mrs K I wonder if you have any understanding of the damage your attitude causes! I kow you still do this to others...I wish you would stop!