Incorrectly Diagnosed

Riyaaz’s Story

This page is dedicated to parents who has child diagnosed incorrectly and has suffered through the faults of the doctor who diagnosed that child. My youngest son Riyaaz, was born in 2010 in Cape Town, after we brought him home from the hospital a few days later he began vomiting, losing weight and his colour changes from baby pink to almost "Midnight Black" We took him to 2 doctors who couldn't diagnose him with anything. After the 2nd doctor's appointment I remember coming home so disappointed thinking "my baby is going to die if I don't do something right now!" I waited till my husband got into the house which gave me a break to get the taxi. I took him to Red Cross Children's Hospital where he eventually became a long term patient in the renal ward under the renal doctors... After spending time in the ICU Riyaaz was moved to E2 renal ward High-Care where I was told that Riyaaz has a rare condition called Pseudohypoaldosteronism type 1 which is a Autosomol Ressesive Salt Wasting condition and also Kidney Failure. He was put on NaCl 18%, NaBic8%, Kayexelate and Omperazole. Over the next four and a half years Riyaaz and I basically moved into the hospital, staying the 1st year 10 months and the 2nd year almost 11 months. Almost forgetting what my other two children looked like... This made me do research and look for more information on PHA and when I couldn't find any doctors in South Africa who knew anything more than what I knew I contacted doctors abroad. Another 2 years had gone by and I started questioning the renal team's diagnosis of my son. I came across another rare condition that symptoms mimicked PHA with other symptoms that Riyaaz now had as well. When I asked if he could be tested for Congenital Adrenal Hyperplasia I was told that I shouldn't look for things were there wasn't anything. Instead I was asked if I was sure I was washing my hands before working with my son. I felt stupid and like I wasn't a good enough mother. At this time Riyaaz was getting admitted at least twice a month. But infact Riyaaz was not on the correct medication and suffered Shock a few times due to dehydration whereby the body pushes all the water up to the brain. He was recently diagnosed with ADHD... His bone age scan came the other day saying he was 13 years old when he is only 6 years. Riyaaz is now under the Endocrine team and we have never heard from the renal doctors since that last renal appointment before he was diagnosed with CAH. I am not interested in taking anyone to court or fighting with them because i too am a human and like all humans I understand their make mistakes. But I do have questions for them... - Like why do I have a discharge letter saying that Riyaaz has Pseudohypoaldosteronism type 1 "Confirmed through genetic testing" Was that just a lie? How could their do that? What kind of people make a medical mistake with someone else's child then just stays away... Avoids the parents...and these were the top renal specialists at Red Cross War Memorial Children's Hospital... There's always the next child...AND