Go with your gut
Disclaimer: I am a big advocate of the NHS and we have received the best care a lot of the time:
a GP sending our eldest straight to hospital when remembering seeing him the previous month and noticing the rapid decline in his health, this led to a diagnosis of coeliac disease;
a midwife and nurse team noticing our middle child’s distress and rushing us to the theatre room to perform a crash section to get her out in time before she stopped breathing;
a junior doctor - working at the weekend - not being happy to let us go home with our youngest after birth on account of his heartbeat and deciding to monitor his breathing and then calling the consultant, this led to a diagnosis of pneumonia.
I rarely like to think of what could have been if these wonderful NHS people had not been there and not acted so quickly and on impulse of something not being quite right.
A year ago, I walked into the GP’s room apprehensive that anything would come of this consultation. I was not pinning any hope on this visit being the solution, however it was also my last resort. I was broken, I was over exhausted, an emotional wreck and feeling like I was failing as a mother. I knew we couldn’t go on as we were, sleep deprived and worn down from Micaiah’s (our youngest) constant waking in the night and mood swings.
A year ago - as it is this week - was Mental Health Awareness week. Following weeks of our youngest waking up at 3am and being awake for the rest of the day we made an appointment to see our GP. I sat down next to the GP and told her how I was feeling and how I was worried that I would hurt my child if this pattern of constant broken sleep was to continue.
Her response shocked me: ‘There is nothing I can do.’ I continued pleading: ‘I just can’t go on like this, I am worried that I will hurt my child, can we not change his diet? Can we not see why he is waking up constantly in pain?’ Her response: ‘A change in diet will not help, he is too young. There is nothing I can do.’ That was the end of the consultation (a few weeks later I wrote to that GP’s surgery about my experience and highlighting that it had been Mental Health Awareness week saying that I did not feel that I had received the advice I ought to have received. The response from the surgery was good). I got up and left the room feeling worse than when I had entered it. My last hope of a change happening dashed in a couple of minutes. Thankfully for us, although we had no appointment, our Health Visitor agreed to come and see us there and then. I broke down in tears and again said ‘I just can’t do it anymore. I am so tired and worn out and worried that I will hurt him if this continues.’ Our health visitor listened with great care and suggested a few things we could try, followed by a promise of calling paediatrics.
Later that day as I walking home from school, the health visitor rung me to see how I was and to let me know about her call to paediatrics. As we were a few weeks away from moving from Scotland to Manchester, the advice was to wait until we had moved and to ask for a referral from our new GP for Micaiah to be seen by the paediatric team. After my floods of tears, the health visitor regularly called and visited.
Nothing changed. Our youngest would still be waking on a good night twice, and on a bad night up to six times. Sometimes it would take ten minutes to settle him back down, at other times it could take up to an hour.
Nothing changed in his sleep pattern or in his behaviour.
Nothing changed, apart from our life.
We stopped working, we moved country, we eased up on the stress, we relaxed, we learned a new rhythm of life.
Our youngest didn’t improve.
He would constantly be up during the night screaming out in pain. Since birth, he has slept a handful of full nights, he has always struggled with passing stools and his moods have often gone from one extreme to another.
In September of last year, I took Micaiah to our new GP to ask for a referral for him to be tested for Coeliac Disease. Our GP’s response was this: ‘He doesn’t look Coeliac.’ I stated his symptoms and that his older brother had been diagnosed at the age of 20 months. Again the GP refused to refer him, it took everything in me not to scream at him or burst into tears, however he had seen my anguish and reluctantly agreed to refer him to the hospital on accounts of his ‘sleep issues’ but just because he felt I really wanted him to be referred (in other words, this referral is pointless and will cost the surgery money that could be better spent is what I could hear from this GP’s tone).
In December, Micaiah had his first visit at the age of 3 years and 3 months with a consultant who was and remains amazing. ‘Of course, he should be tested for Coeliac Disease if his brother has it.’ [NICE guidelines state that first-degree relatives of people with coeliac disease should be tested regardless of symptoms]
Hallelujah! Finally, someone willing to investigate the cause of our youngest’s behaviour. He asked for bloods to be taken to look at vitamin levels and to test for Coeliac Disease.
Fast forward five months - following 3 visits to the hospital for blood tests, 2 visits from a health visitor at home and a visit to the continence team - to this weekend when we received a letter from the consultant.
Micaiah’s Anti-TTG (IgA level) was >250 [to put this in perspective his older brother had a level of 210 at diagnosis and his blood tests taken last year showed a level of 0.2] and he has antibodies to Endomysuem positive in his blood test which indicate that he has a strong possibility of Coeliac Disease. Micaiah has now been referred to the gastroenterology team and we await this appointment for an official diagnosis. Meanwhile it breaks my heart having to continue to feed him food containing gluten knowing it is doing further damage to his gut – however if we were to start a gluten free diet and an endoscopy was needed for diagnosis it would affect the results. I am now praying that we do not have a long a wait. How long has Micaiah had ceoliac disease, we have no idea. Whenever we would ask him if he had pain in his tummy, he would always say no. Has he always had it? Could it be that what would be excruciating pain to others is his norm?
I am relieved that we finally have an answer. I am also angry and sad that it has taken years to get the answer, the cost and time it has been for the NHS to have all these appointments with various professionals when all it would have taken was one blood test. Since receiving the consultant’s letter I have written to our GP surgery to make them aware of what was said at our GP appointment last year and to ask that in future should any other family with a history of coeliac disease come to them asking for a test to determine whether their child has coeliac disease, to please listen and act. Who knows the damage that has been done to our Micaiah’s gut and how long it will take to repair?
Parents go with your gut instinct – if something doesn’t feel right to you – get advice, seek help, ask for support, do your research and fight like mad for your child to be seen by the right people. Trust your gut and what it is telling you.
For information on Coeliac Disease and diagnosis visit: www.coeliac.org.uk
Coeliac UK are amazing and have being our source of knowledge, support and strength for the past six and a bit years since our eldest’s diagnosis.