Living on steroids

Dear Reader,

From my last post, Lémuel went through the worse weeks of his short life. Mid May, just before his 6month check-up, we realised that he lost 1kg which is life threatening for his age, as he was supposed to get 1kg from his 4 month check-up. His rashes got worse and his skin was turned into a humid yellow flaky and bloody swamp. He had very very bad rashes with an severe diaper rash. It's was so severe I better not show any pictures... It still break our hearts looking at pictures of him at that time. 

The doctor (let's call it doctor A) we went to see who did not prescribe any steroids still did not acknowledge that he was going through a painful treatment so, in a call from God, our pastor advised us to go see another doctor (let's call it doctor B). From the beginning, we kept ourselves from using steroids but his condition was too severe to chose not to. Dr B told us that we need to use it because he has too many open wounds and although he can't die from eczema, he could die from infection. So, she put him on antibiotics, swabbed his skin to check if he had any staphylococcus aureus, once his wounds stopped bleeding everywhere, he was to start steroids treatment at a 1:1 ratio, that we scaled down as things were improving. Yukyin had to follow a vegetarian diet as Dr B's is specialist in nutrition and meat, dairy, wheat and egg are a 

After two days, he was clean. All clean, he was so clean, nobody could believe it. Even Dr B couldn't believe it. But our worries continued on, his weight was worrisome. He did not like to drink his prescribed milk "Neocate", a man made milk for extreme allergic kids. On top of that, he started to have swollen feet. During the week-end, Dr B called over and asked us about his condition, she suggested that we still head over the hospital for a blood test to see if he had any hidden issue. So Yukyin spent two days at the hospital. During these days, he was fine, he still did not like to eat anything besides breastmilk. Having him eat his Neocate was quite a challenge, but God also provided us with a helper that is very patient with him.

Weeks passed, he started to gain some weight, but his rashes would come and go, he had a new kind of rashes that we never saw before, so Dr B advised us to seek a dermatologist, Dr C, he confirmed that it was eczema... and his treatment was exactly the same as the treatment for Myrtille... Low let-down ratio with wet wraps... This was kind of a "back to square one" feeling. We did not expected to have to go through all this to find out that we should have kept doing what we were doing at the beginning minus the staphylococcus aureus. Besides, talking about those, his lab report said that he had a heavy growth of them, so he could have died.

Anyway, armed with new creams and treatment, we continued to applied steroids and went back to see Dr B. She was still thinking, why was his condition not improving? he should have started to get better, Mom was eating vegetables, he was on breast milk, we kind of gave up on the Neocate as he was throwing it up, from her point of view, even if her breast milk is wrong, it is still better than formulas. She was at the end of the rope and she gave us two choices: Dr D, a Traditional Chinese Medicine Doctor, and Dr E, a heavy metal specialist. We decided to go with Dr E... 

Meanwhile, at the hospital, we went back for his blood test results, they were bad and all over the map, all the indexes were wrong. But he was visibly getting better. The doctor (Dr F) there was still concerned because of the amount of steroids we were using, but we explained him that we did not really have the choice. :( So, he arranged for another blood test few weeks later to recheck-up on his condition.

Beginning of July, he got his blood tested again, by that time, all indexes were ok, but Dr F said that we MUST stop the steroids because it will have effect on his growth (blindness and bones issue). He gave us Protopic... which is known to give skin cancer. Oh, I nearly forgot, he also did a skin test for allergies and he is allergic to cow and soy milk, almonds, dust mites, pork and wheat.

On the private side, Dr E met him and explained his theory, heavy metals are impacting his immune system and it reacts illogically against healthy external elements. Yukyin did drink a lot of fish soup during the first few months after birth, so that might explain why he has such issues, there might be a link!

Lémuel's urine sample was sent to Paris for testing... and we just got the results a few weeks ago, he has evidences pointing to the fact that he may have high levels of Mercury, Lead and Arsenic, 4-5 times the upper limits. :( Dr E is still confident, he said that he has faced a number of similar cases and that Lémuel is still young, he does not think it will impact his growth, especially his brain. His treatment will still have to last at least 4 months, it can be quicker but the quicker it will be, the heavier his liver and kidneys will be damaged. He still prescribed a huge amount of supplements to boost his immune system. He is going to go through a chelation treatment.

So, here we are, applying steroids nearly every night (current let-down ratio is 1:15 with Eloment Cream), our diet is vegetarian, dairy free, gluten free, egg free, milk free... it does not leave a lot. At home, we have Air Purifier, we bought anti-dust mites beddings for us, we change detergent, we clean air conditioners etc... did a lot of things at home. 

Thanks the Lord, he is still alive :) Now, he eats a lot more, his rashes is half under control, he smiles!!! we went to look at his pictures when he was the worse and I pray that we never see him in such a condition ever again.

Anyway, if you have time, just drop a little minute of prayer for us. We pray that we can overcome his allergies.