Age: 4.0
Sex: M
Vaccine: MMR, VARCEL
Symptoms: Computerised tomogram normal, Haemoglobin decreased, Hypersplenism, Nuclear magnetic resonance imaging normal, Seizure
Clinical narrative: Child f/u in our clinic since 11/21/1 and had just 3 visits since. According to mother family was leaving elsewhere before. Child was diagnosed with Hb SThal disease. Patient had a history of hospitalizations and blood transfusions. Also was diagnosed with Developmental delay, but did not get any services and according to mother was not seen by neurologist. Since moved here was seen by a Hematologist at Hospital. Record from Hospital was requested. Only one visit from 8/16 was faxed. At this visit child was s/p splenic sequestration and blood transfusion, advised f/u in 2 mo. During visit 11/21 mother stated that she does not want to continue to see hematologist at Hospital because she does not like this hospital. She asked to make an appointment in another Hospital and appointment was made at Hospital center for 11/30/16. Also child was referred to neurologist, development pediatrician - mother provided with Information to make an appointment and with genetics-appointment was made for 1/31/17. Also appointment for audiologist was made. Mother did not f/u with any specialists. Also mother was asked to provide a copy of pneumococcal and meningococcal vaccinations that necessary for sickle cell patient. Child was admitted to Hospital center 12/16/16-12/21/16 with his third episode of splenic sequestration and HB 4.5. After discharge she f/u in hematology clinic with Dr. 12/21/16 and advised splenectomy as well as hydroxyurea treatment. Mother did not want to proceed with treatment. Child was admitted again 1/25/17 for the fourth episode of splenic sequestration. Mother advised to take child for splenectomy at this time again and was agreed, but after arrangement for surgical consult were made, she missed f/u appointments with hematologist 2/3/17, 2/9/17, 2/15/17. She also did not provide necessary vaccination record. I was called by hematologist, Dr. and Informed that mother want to come for vaccinations 2/24/17 and than has f/u with hematologist. Hematologist was very concerned that delay of splenectomy can be extremely dangerous for this child During the visit 2/24 I again was asking mother to provide documentation of pneumococcal vaccine, but she stated that child had it but she did not get a record. I encouraged mother keep f/u appointment with hematologist, but during this visit mother stated that she want to f/u In different Hospital. When I asked her if she has an appointment she stated that she will make it at her convenience. I contacted Dr. and she informed me that mother is still going for meetings with Hospital support group. During this visit I also asked mother why child did not f/u with other specialists - neurology, developmental, audiology as well as did not have educational evaluation and mother stated that she will do it late. During this visit mother was very upset and stated that she knows better than specialist what does her child need. During the visit 2/24 child received MMR and Varicella vaccination. 2/27/17 Doctor called me again that child missed an appointment. She contacted hematologist from Hospital, Dr. and she informed that 2/24 child was admitted to hospital with seizures and had to f/u with PMD 2/27/17. Hospital hematologist called me and informed that child was admitted, mother refused to give PMD Information to the hospital. Child reported to have normal CT and MRI. Poor compliance was discussed with Dr. and she wanted me to discuss it also with a nurse who was in closer contact with mother and I had a long conversation with nurse. She reassured me that she will talk with mother and she will f/u with hematologist and me. I also tried to call mother and left a messages.