I had planned to write in the blog either weekly or fortnightly but I just wasn't feeling well enough to multitask and I was trying to concentrate on my TikTok videos but I just dont know if it's going anywhere. I'm planning on doing a bit more updates on here over the next few weeks anyway. This blog will hopefully become a resource for families affected with FVSD and go on as an account of what happened. so good news first BOTH my sons have been accepted to be seen by the genomics team at Sheffield and I'm not leaving that appointment without an agreement that I'm happy with. 

Summer is the worst time of year and best time of year. All the pleasures of summer with the worst parts of having adrenal insufficiency. I am reasonably confident that I have secondary adrenal insufficiency due to a pituitary cyst that has magically disappeared according to my doctor. I don't think that is the case at all and have been struggling immensely with dehydration, migraines and fatigue for the last few weeks. Spinal problems are causing flares of low cortisol and fatigue which makes normal life just that bit harder. Despite my husband reminding me to drink I feel no thirst and feel sick when I try to drink anyway. It's thoroughly unpleasant. I think Starmer leaving is a good thing because he never struck me as a confident man who had the ability to appear calm on the surface. Will it help the FVSD community? Unlikely.

Well, what a week it's been in my house. My Oldest son lost his first tooth. It's half term so absolute chaos with four kids. We had a few updates on the medical front. First of all We were told that we could be referred to genetics for my older son to see if we could find a cause for his unexplained hypoglycaemia which is being treated as ketotic hypoglycaemia And according to the Nhs guidelines, he should have grown out of more than a year ago. He's had a metabolic disease panel done before but I think it's possibly something hormonal or something either so rare or so simple that's been missed. I dunno that's why they're the doctors. We have got good support in place. So we shall see. 

In a slightly unexpected way I got into trouble with TikTok this week for spreading misinformation. I created a pair of videos discussing the situation of the FVSD families and how the government has responded. The second video was posted no issues however the first video which was posted they took issue with claiming disinformation and political posturing which honestly it was neither. It threw up warnings and was taken down by TikTok. I appealed and it was rejected and then when I tried to complain there was no response. It's a common issue with the platform that creators don't have the ability to discuss complaints or issues with a human. I'll post the videos and let you decide if it was inappropriate. Please email me with your feedback. Jockamum@gmail.com