So DS is in hospital at the moment but the doctors barely seem to be listening to me. I keep getting comments like 'take it you're a first time mum' and 'babies get poorly'. It's only a handful of nurses that have directly seen him when he's having a particularly bad hour that have showed any understanding.
History - in September we were in Turkey (booked pre-covid) he had a hospital admission as his temp was over 40. We gave him calpol and ibuprofen and it didn't come down. (Covid neg). Hospital suggested IV antibiotics but we were leaving soon so we took him home and was on amoxicillin. He improved after about 10 days and his temp came down.
But he's never been 'right' since. He's gone off solid food, he gets regular fevers that last 1-3 days (but come back shortly after), rashes that pop up and just seems to be extremely susceptible to any kind of infection and it always hits him hard. Every time it happens we've taken him to the hospital/GP and they've always just said 'oh it's something viral we can't really do anything about it but come back if it happens again' and sure enough every time we go back we get the same response and they have never referred for admission because he would be more at risk of catching Covid on the ward. Fair enough his temp always went away but why did it keep happening??
Rewind to 11 days ago he started with his usual symptoms of a temp but this time he had cold like symptoms alongside. Rang drs on day 4 of this not going away for them to say get a covid test or we won't see him. Fair enough, Covid test negative. I then go to see a doctor every day as calpol was becoming less effective and his temperature was spiking higher every day. On day 7 he was prescribed antibiotics for suspected tonsillitis, although no two doctors can agree on whether he actually has it or not. Day 10 I go into hospital with him and I'm sobbing to the doctor that I cannot control his symptoms. I woke him up that day, his temp was near 41 and he was barely responding to me. Sods law that as this dr was seeing him DS decided he was having a good hour so although his temp was still above 38 he was trying to walk about and play. So obviously the Dr is dismissive saying 'take it you're a first time mum' and saying this is normal. I demand to be seen on the children's ward.
The ward see his temp is high and that he has had this temp for 10 days and has already been on antibiotics for 2 days so order a chest xray, blood count, urine culture and blood culture. Everything so far has come back as no cause for concern, apart from his white cell count is high (consistent with infection). He’s also had 2 other blood tests this year where his white count is high due to infection. Whilst admitted, his temp was spiking to 40.5 even whilst medicated, his heart rate ranged from 155-194BPM, high respiratory rate and his O2 stats were fine. He’s clearly unwell, and he’s unable to fight it off.
He’s been discharged after a day and told that they can only do what I can atm in terms of his temperature is stabilised about 70% of the time as we have a good routine of ibuprofen/calpol going, but when it’s wearing off his temp is till spiking above 40. Gave me open access to ring back every time his temperature spikes so they’ll be on call if I do need to rush him in if he goes unresponsive and I need to call back within 48 hours (which will be day 13) and if he still has a temp then he’ll have to be readmitted as clearly the antibiotics aren’t working and they’ll have to investigate further. I already know that the antibiotics aren’t working, we’re on day 3 of the course and he’s getting worse not better. The Calpol is managing symptoms for an issue that is just getting worse and I’m worried how far this is going to go.
I’m worried that he has some kind of problem with his immune system. He is constantly getting infections and when he does he’s struggling to fight them off. I raised this with the doctors already and they said he will need 7 overnight admissions before they’ll even consider it!! He would be close to that already if they had admitted him every time he came in, and he was only admitted this time because I broke down crying that this kept happening and basically demanded a second opinion from the paediatric team. I can’t bear the thought of him just having to carry on like this. He can’t do anything or go anywhere and it seems every other week that we’re being housebound completely (I know we’re in lockdown but I can’t even take him to the shops for fear of him getting chills or even picking up something else!). Like what if this is something really serious like god forbid Leukemia or something along those lines? Would they pick up on it blatantly or could something like that go undetected if they’re not looking for it? (I know this is an unlikely scenario and I am not trying to self diagnose him at all!)
I feel like a neurotic mother (because that’s the way I’ve been treated since September except by a handful of doctors that have actually taken their time with us) but I just know something isn’t right. Symptoms that I know he has (like he is currently really unsteady on his feet falling over - being brushed off because they think that’s just how 13m/olds walk but he is typically a VERY confident walker) are being ignored and doctors that aren’t even taking the time to take his full medical history are just saying things like ‘well kids do get ill’ but not like this they don’t!!
I’m terrified that there’s something seriously wrong and that it’s going to be missed until its too late. This is not my healthy little boy that I had for the first 10-11 months of his life. He won’t even eat solid food - a couple bites here and there on his good days - and has gone completely back onto formula (which is already being monitored by HV) and he just seems to have not grown but he’s still within the ‘normal’ parameters for his age (even though he’s plummeted from 90th centile to 25th). All of this info might not be relevant but I know what my gut feeling is.
If you’ve been through similar - How did you convince med profs to take you seriously? Am I just being neurotic? I know mums net is not the place for medical advice but have any of your LOs had similar symptoms?
I’m sorry if this is really ranty and incoherent, I’m getting to the point I’m crying several times a day because Im so scared and I feel like I should be fighting harder for him but I don’t know what else I can do ðŸ˜