Seeing Light

Dear Reader,

Here is our family last update, Lémuel has been under detox medication for around 9 weeks now, at his last doctor visit, the doctor decided to switch his medication from IV injection to oral intake, it allows the treatment to be given in a more stable way. We received Lémuel's food allergy test and Yukyin took the loving decision to live on rice, potatoes and sweet potatoes so that she does not trigger his allergies through breastmilk, I really thank God for such a loving wife, she is a model for me. In the same time, Yukyin got her heavy metal test result and she has 12 times the reference value for Lead, which is quite astonishing. Hence, she picked up on the treatment too, we'll see how she fares but her rashes has been under control so far.

Lémuel's skin is a bit better, we went from daily steroids to steroids once every two days, it does not mean that he is completely clean from rashes, it is just that his rashes does not peak suddenly one day to the other. First day after steroid application, he usually get a lighter tone, second day one would see clouds of red rashes a bit everywhere. In the last 3 weeks we have seen a slight improvement as on that second day, he has a bit less rashes every time. So we keep praying that he will get completely clean one day. Also, his rashes are a bit different from before, we do a lot of efforts to keep his rashes disinfected, as we moist them with a lot of greasy product and do a wet wrapped treatment at nighttime, it is important that his skin is free from bacteria before doing so, luckily, the doctor prescribed a disinfecting ointment that we can freely apply on his skin. That helps his skin being free from bacteria and avoid infection. His rashes are drier now, they don't ooze liquid as we could have in the past, which is a good thing.

Improvements... but at what cost? Yukyin's diet is boring and we are just staying home every week... hence you don't see a lot of pictures of them. Hopefully, we will finally have him off those medication and he will be able to start eating like a normal person.

Myrtille, on her side, is growing too, she is now in K2, she does love her brother, but we see some hints of hate and love relationship growing. She loves it when she manages to get him laughing non-stop, but she does not like that all of our time is spent taking care of him which is not so surprising but in the mid of despair, she surprisingly started to act like him in an attempt catch our attention. Anyway, we know her needs, we will address it, we just need help from above and from your prayers as always.

Thank you for your prayers and support to us.

Ah! Last thing, we are all sick, it started with Myrtille, then Mama, then, Lémuel and now me... Our helper is the one next on the list. Nowadays, our bodies are just unfit to fight against a simple flu.

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.

Rashes, 2nd run

Dear Reader,

Today, I need to pour out my sorrow into this blog... Lémuel is suffering from rashes that covers approximately 95% of his body. It started maybe in January, at first, we did not care as we thought it would slowly disappear, but as time flies, rashes started to spread, more and more. Around Chinese New Year, his skin was rough, like sandpaper, completely opposite from what we should expect from a baby skin. When he took bath, he was scratching his knees, scratching his tummy, and as he has some pretty sharp nails, it bleed. We thought that we would never have to go through this again after our first experience with Myrtille and her dust mite allergy... we were wrong. Lémuel has a wider spread rash and he is developing that a lot more early than Myrtille.

As his condition did not improve, we went to see a doctor, he gave us some steroids and bath oil. After a week, we did not see any improvement, so we tried to treat him the same way as Myrtille, wet wrap method with a low let down ratio of corticoid cream. It cleaned his body, but we forgot about the small injuries he inflicted himself and they started to get infected. So we went back to the doctor again and I got yelled at because I should not have treat him the same way as Myrtille... having the same symptoms does not lead to the same treatment, so I clench my teeth and took it all. Lémuel developed an infection and we got a cream for that, we stopped the corticoid and continue the wet wrap, but after two days, rashes were back again. We were lost. The rashes even spread wider in area. :( Things were getting out of control, so I contacted the fellowship, and Yukyin contacted Myrtille's classmates mom and have them prayed for us.

One of the mom called Yukyin back, she shared a similar experience and advised a dermatologist. We went to consult him on Monday, he told us that we made a lot of things wrong, we should not have used the corticoid, we should stop using paraffin based cream, etc... he gave us a bunch of bath oil, moisturizing cream and we started a new treatment. He noted that Lémuel had a bunch of microbes on his head so gave us plenty of disinfectant soap. He stated that baby should be healed by 1 year old, but that's still sooo far away!

4 days through the treatment, Lémuel is peeling around the exposed area (neck, face, head) and the non exposed area are still reddish with little bumps around. For the last two days, Lémuel started to cry in pain every time we would apply his cream, like something is stinging his whole body, he moves his body so as to avoid our touch. His whole body feels like burning hot.

We feel helpless. In top of that, Yukyin has a blocked milk duct following a yeast infection.

God I know that you read that blog... because You know everything, anything that I write, think, You know them even before it reaches my mind, some of these thoughts, some of my acts, You are the one who suggests them to me, plant them in my mind as we plant a seed on the ground. To let you know, I would rather live with Lémuel's skin issue than look at him everyday going through that pain, living with an ever itching skin, living with the stinging reaction of moisturizing cream applied on his skin. I know that he is meant to be one of your child, I know that it breaks Your heart every time You hear him cry, I know that You are with us when we hold down his four limbs as we apply his creams. I know that You are there bearing his suffering with us. Give us patience O Lord, so that we can go through this, strengthen our faith in you. 
In Your Holy name, Amen.

Brother and Sister.

If you have 2 minutes in your busy schedule, please pray for us. Thanks for reading.