I’ve had some radio silence lately and I thought I would catch you up on the main reasons for my extended absence.
We went to the doctors and decorated!!
Seeing as this post sounds as exciting as watching our paint dry, let me explain. A few months ago Boo had to go to A&E for a minor issue, whilst there her whole medical history came out and resulted in us being told by the doctor that the hospital had failed my daughter and we should seek help from PALS (Patient Advice and Liaison Service). He also stated he would be sending a strong letter to my GP. I don’t like to make a fuss so never did go through PALS as I am lucky enough to have an awesome set of GPs who made sure upon receiving the letter they signed me up to another paediatrician at a different hospital.
We finally had our appointment and was very impressed for one of the first times ever the doctor actually listened to us and seemed to understand the effect that Boo’s issues have on us as a family. People have always seen issues we have as a trivial issue, which I accept when compared to other family’s with dire medical conditions and needs I can see our troubles might seem minor, however for our family the problems we have are not insignificant and have at times nearly broken us as a family and as individuals. I have suffered from PND which was never allowed a moment to go away, Hiccup suffers being born into a family that is rarely calm and Boo suffers as she knows the effects that her behaviour has but cannot stop herself.
A full blood test was ordered including thyroid and coeliac screen………yup we are back on gluten!!!! Furthermore we were recommended to contact the school nurse for a further hearing test and help with anxiety and a referral was made to Evelina London Children’s Hospital for a sleep study (though we were warned there could be a 2 year waiting list for this).
Anxiety always means that blood tests with Boo are slightly traumatic – especially if you are the kid next in line that hears the screaming from the nurses room!! The results took about a week though we still needs to discuss them with the doctor. Everything came back negative! This is a relief on one hand but on the other it means we are still no further to explaining why Boo has the problems she has.
To really make my week the sleep study came back with a date in December which is amazing. I never dreamed we would get a sleep study so quickly. We have watched videos about what to expect and I will write a blog post when its all over in case any of your children have to have this test. We are currently awaiting results.
The biggest thing has been being back on gluten. I really should have learnt not to be so complacent – at week 2 I was questioning whether gluten even had any effect on Boo and maybe we were barking up the wrong tree, I even thought maybe my time as a GF blogger might be over. Then week 3 on gluten hit and the same old issues returned;
Aggression, irritability, stomach pains, hair falling out, pale complexion and dark circles under the eyes.
On 17th December she had another blood test for her coeliac screen and then she needed to stay on gluten until she got the results. If her test was to come back positive she would be admitted into Brighton Children’s Hospital for an endoscopy under general anastheatic, and then no more tests…..we are done. Answers or not my baby needs to live her life without the constant medical interruptions. As it turns out she is officially not coeliac though she does carry the DQ8 gene (as does Hiccup) this means they are both (conclusively) considered to have Non Coeliac Gluten Hypersensitivity. As you will have read about in my previous posts I’ not sure how I feel about this as we tend to get dropped off the system with no further checks. Hmmm.
In other news, Hiccup has tonsillitis (again!) and anyone following me on Instagram will have been bombarded by pictures of my downstairs being redecorated and re-floored…..I’m in my 40’s; this excites me greatly.
What’s been happening in your worlds?