Lliam’s Chronicles

I cannot believe it has been more than a year since Lliam was diagnosed with Aplastic Anemia. It’s been a long year, but all in all a good year. As you may know we have been “promoted” to seeing the specialists only once every three months at this stage, and today was D-day again. Lliam actually said that he was nervous on his way to the hospital…he regards his blood count results almost as a report card. Today, he had a good one! His hemoglobin is up to 115, platelets 72 and neutrophil count 1.3. In short, we have broken through the plateau and in the doctor’s words “Everything is moving in the right direction.” We are still a long way off full recovery – his white and red blood counts have just reached the very bottom ranges of normal and his platelets are not quite halfway, but at least we are getting there even though it is a slow process.


Aside from the checkups Lliam has a normal life now. He can participate in almost any sport or activities he likes (we are still not comfortable enough for him to do gymnastics and ice skating), he can go on any rides at theme parks, doesn’t have to be taken out of school when there are outbreaks of chickenpox or whooping cough, and the last blood transfusion he had was way back in March! We are all looking forward to a three week holiday in Queensland (Gold Coast, Sunshine Coast and Brisbane). We will visit Warner Bros theme park, Wet ‘n Wild, and Sea World where Jahna and Lliam will have the opportunity to swim with the dolphins!

I wanted to do a posting about the next issue earlier, but just didn’t have the time. Through a newspaper column we became aware of another boy (Lachlan) now also living in Sydney who acquired aplastic anemia in South Africa. One of the possible causes for Lachlan’s aplastic anemia has been listed as Gambex, a popular lice shampoo used in South Africa. Gambex contains a pesticide called lindane. Lachlan’s mother started communicating their experience to friends and family to make sure that as many people as possible are informed about the dangers of using Gambex. The story eventually reached the newspapers, and was forwarded to us by friends. Aplastic Anemia is even listed as a possible side effect on the pamphlet! The scary thing is that very few people know what aplastic anemia is, so they would probably use the product anyway, even if they noticed the warning in the pamphlet. Gambex is available without prescription in most South African pharmacies. Last I heard from Lachlan’s mom, Sharon, he was doing fine, following a bone marrow transplant. One of the articles on Gambex as written by Wendy Knowler can be found here.

I discussed the Gambex issue with our specialists today, and she indicated that she will look into the possibility. She explained that Lliam’s positive response to the immuno suppressive therapy was a strong indication that his aplastic anemia was caused by an auto immune response that can develop spontaneously, as result of another virus, or as result of an indirect trigger. When aplastic anemia is caused by exposure to chemical compounds, it can happen in one of two ways. Firstly the compound directly attacks the bone marrow, in which case the patient would not respond to immuno-suppressive therapy and will need a bone marrow transplant to get better. Secondly, the drug or chemical compound can trigger the overactive immune response leading to autoimmune disease.

In Lliam’s case we will probably never know exactly what caused this disease, but we include the Gambex discussion in this post to help spread the message of how dangerous Gambex is. The lesson for us in all of this has been to be far more careful in the use of all medications, disinfectants, cosmetics and lotions. You never know what is hidden in the fine print…

We wish all of you a merry Christmas and a wonderful new year!