Hi,
my names Laura and I am mummy to my little 3 year old boy. Back in march this year my little boy became increasingly unwell. He has developed a rash, to which we were just fobbed off as chicken pox, but as a mother and my gut feeling I knew it wasn’t. One day a couple of weeks after this said rash, he completely lost the use of his left leg, he had enlarged lymph nodes on his neck, armpit and groin. I took him to two hospitals who were quick to send us home, with no tests, no X-rays, no scans, and telling me the limp and pain was due to having a virus. I insisted this was not right, but went home with my little boy. I returned the next day, my son was barely able to walk, to which we were finally listened to and admitted to a ward. Then we had x rays and bloods on my son’s chest and knees. The blood test results came back with raised LDH levels, and the x ray on his knee showed inflammation. After staying in hospital for 2 days we were discharged, with consultants informing me, the limp, inflammation in knee and swollen lymph’s were due to him recovering from a really bad virus. To which I thought to myself I’m going to have to listen to what they say, they are the professionals. But still something still didn’t sit right. Over the next coming weeks and months, my son was suffering with severe headaches during the night and day, causing him to vomit, he was refusing to eat, complained of stomach pains, tiredness, just genuinely unwell… also still walking with a slight limp and crying in pain. We had our follow up appointment in the May with the paeds consultant, who repeated bloods and x ray on knees, I also shared my concerns that the lymphnodes were still enlarged in all 3 areas and have not gone down at all. When we received blood test results, he was now Anaemic, but the LDH level had come back down to the correct level….. fast forward now to November,new have had another follow up appointment in clinic, where I expressed my sons lymphnodes are still swollen, and a lot bigger than they were at the beginning, and consultant herself said there was a ‘significant amount’, the ones in his groin are more of a long shape, and feel like some have matted together to form ones that are bigger, they even go down his leg slightly, the consultant says they are 1.5cm which isn’t not clinically anything to worry about but, to me they feel so large, he is still complaining of pains in his knee, his still off his food, he has sweat pooling on his for head when he is sleeping and I have noticed, he is waking more in the night and his hair is wet with sweat! He has now started to make a noise with his throat every time he is eating and saying there is something in his throat. He had bloods repeated at this appointment, which again has shown a rise in his LDH, raised basophils, eosinophils, he is still showing as anaemic with low ferritin and b12. We have had another x ray which I am assuming has come back ok, because I haven’t been told. This time the consultant has referred us to Paediatric Haematology at QMC. I am absolutely worried sick, I have not slept in days, we have an appointment though with oncology in December and I am just looking for advice and people to talk to who have possibly been through this? I have honestly felt like they thought I was loosing the plot, but now I’m starting to believe my gut instinct has been right. I’m petrified his has Lymphoma, this is a mums gut instinct I’ve had for months and months and don’t feel like anyone wanted to listen because blood tests aren’t showing anything alarming….. I haven also noticed there’s some more lymph’s appearing in his groin…. Thank you for taking the time to read, and reply. I’d just like to hear from anyone in the same position. Do I push for biopsy and ultrasounds?