Hi, 

My 5 year old daughter was diagnosed with Chronic Immune thrombocytopenia (a blood/platelet disorder) 10 months ago. She has consistently low platelets. 
1 month after her diagnosis, we found an enlarged lymph node on her neck. The drs put this down to being left over from an infection/virus. We sought a 2nd opinion, he said the same. 
Its been 9 months now and the node is still enlarged with slight growth, has a cluster of enlarged nodes on her other neck side and enlarged nodes on both sides of groin. Chest has been cleared by X-ray. My daughter is sweaty, but that has been going on for a long time, she does not have much appetite and is small for her age. She is pale, full of bruises from the blood disorder. She is tired, she complains of her legs feeling 'fizzy' sometimes hurting her multiple times daily. She has been incontinent for 7 weeks now too (not sure if this is related). 
 

All blood work has come back as normal with exception to very low platelets. 
 

Im concerned our dr is not taking us seriously. I fear she has Hodgkins Lymphoma but dr keeps telling us that her bloods are fine. I was under the knowledge that a biopsy had to be done to rule out/diagnose. The largest node is three quarters of cm in size according to dr. 
 

Each time we end up on childrens ward with low platelets, they are frantic. I really feel for all the staff. But when we get a duty dr, we get consistently fobbed off and have had 2 major mistakes made that could have put child's life in danger. 
We feel that going private is the only way to help us either sleep at night, or face up to what we fear. But, we really can't afford it so would put us in debt. 
 

Does anyone have any suggestions on how or what to do please?

Thank you!