Hello I would like to introduce myself to you. I have a lot of experience in areas that I think might be able to help other parents; but first a little about me.
My son Callum but he does not have a diagnosis of Fetal Anti-Convulsant Syndrome, but he ticks many of the boxes
My son was not affected by sodium valproate as in pregnancy, But I took Anti convulsant Meds Carbamazepine 1200mg a day, Clobazam 40mg a day, and anti-depressant Citalopram 60mg a day.
My areas of speciality are
Heart Problems (cardiac) My Son was born with Tetralogy of Fallot (Severe), Pulmonary Atresia, with Sub Aortic Stenosis, V.S.D(Ventricular Septal Defect), R.V.O.T.O (Right Ventricular Outflow Tract Obstruction), D.O.R.V (Double Outlet Right Ventricle), P.F.O (Patent Foramen Ovale), A.S.D (Atrial Septal Defect), Severe Hypoplastic right pulmonary Artery, Callum was born in poor condition, with Respiratory distress, resuscitated+ taken to S.C.B.U, where he was intubated+ ventilated, then transfered to Alderhey hospital in Critical condition to Intensive Care Unit, He was required urgent treatment+ survival very uncertain. He had meconium staining, cyanosed (Blue due to deficency of Oxygen in blood), left Pneumothorax (Collapsed lung), required blood transfusions. He has Cardiac valve leak, soft systolic murmor, Sinus Rhythm with First Degree AV bock, Right Bundle Branch block pattern.
Callum had his first surgery on his heart at 2 weeks of age. He has had 26 operations to date (He is 5 years old), I will give you more information, once I have introduced Myself!!
Gastrostomy feeding, Callum is fully Gastrostromy fed via feed Pump, via MIC/KEY Button, So i have a very vast knowledge of all aspects of this, he has many Gastroenterogolical contiditions , including G.O.R.D (Gatro-Oesophageal Reflux Disease), Gastric Dumping Syndrome, has had 2 Fundoplication operations, and alot more!
Central Apnea, Where Callum stops breathing in his Sleep, He did have Sleep Apnea for which he had an Adanoidectomy, and It improved, Now developed Central apnea, Which we have a SATS machine on him over night, to let me know when he De-Sats, but this has worsened and we have an appointment coming up for.
I will attach a file of Callum's full conditions soon.
Please feel free to ask me anything at all, I want to share the Knowledge that I have gained and support other parents who would like My help and support. Jo Peace xxx
(contact via the OACS contact form)