14 month old just out of hospital. Want to do Chemo. Help!

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dadonmission
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Joined: Wed Aug 26, 2015 11:39 pm
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by dadonmission on Thu Aug 27, 2015 11:20 pm

14 month old just out of hospital. Want to do Chemo. Help!

We'll both parents had very bad eczema. He got his at 4 months and it just gets worse. We have been to UCLA MED Center and seen one of the top pediatric dermatologists. She's great and well trained.

His skin is so bad he is just constantly suffering and dad stays home full time to give wet wraps, meds and lotions. We have eliminated all things he's allergic to and all the standard stuff. Mom is in health care and we both have a lifetime of experience with this but never seen someone this bad. He spent 4 days in the hospital and it was a horrible experience.

They're at a lost practically of what to do. A newer treatment is chemo therapy to lower the autoimmune response since they think his eczema is systemic. It's had great results but now they aren't sure as no one this young has had it. We obviously don't want this. It's a last resort.

But he is suffering so much and always getting infections and having to get back on antibiotics and prednisone. We know the bad effects and don't want him on this. We are doing everything we can and have been told.

Here is a pic of him last week. He's better now but only for now since he was on an IV drip of meds. It will just get bad again.

Anyone have any advice or experience similar? Looking for something to ease his pain and suffering. We are desperate and beyond depressed and worried.

Keep in mind we haven't neglected him. We are well educated in this and he is seeing a ton of doctors. This got so bad over such a short time too. We are doing what's recommended all day and all night. It just gets worse.

Thanks for reading.

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Marcie Mom
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by Marcie Mom on Fri Aug 28, 2015 8:15 am

Re: 14 month old just out of hospital. Want to do Chemo. Hel

Sorry to hear this, hugs! I understand when you mentioned about seeing the best doctor, getting the right treatment and already acting on right information - yet, sometimes the eczema doesn't seem to resolve. My daughter had responded well to a course of predinoslone at 7 month old, since then, the eczema became manageable. I'm thankful and know that it's not due to my credit or having done the right things that my child recovers - many other parents (including those I met in my support group) are doing all the right things but the skin didn't recover. Have no 'cure'/ suggestion, just want to say to not blame yourself/ feel guilty if ever such thoughts cross your mind, hugs!
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xxwxshan
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Joined: Mon Oct 12, 2015 4:13 am
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by xxwxshan on Mon Oct 12, 2015 8:45 am

Re: 14 month old just out of hospital. Want to do Chemo. Hel

Hi, dadonmission
I understand your feeling. My daughter had eczema since she was six months old. The eczema covered all her body. When she was young, we often took her to the hospital, and had seen a lot of doctors. We have tried more than ten kinds of ointment, and some ointment which contained hormone. At that time the obvious phenomenon is that she did not perspire much. We had a dark period at that time and I often played with her outside in order to make her perspire. Under the help of diet and excercise, now she is 11 years old and she became better, but still there is eczema on part of her body. The itch may be so bad that she scratches her skin until it bleeds, which can make her rash even worse, leading to even more inflammation and itching.
Fortunately, several months ago, I tried a kind of ointment which is natural and consists only of Chinese herbs, such as Matrine-Loremusers, Tribulusterrestris-Loremusers,
Quicalamina-Loremusers, Alumen-Loremusers, Cocklebure-Loremusers,Smilax-Loremusers, etc., After applying this ointment for two weeks, the eczema is healed. Of all the ointment I have tried, this one is the best.
Wish you all the best.
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VenusGenetrix
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by VenusGenetrix on Sat Feb 06, 2016 9:14 pm

Re: 14 month old just out of hospital. Want to do Chemo. Hel

God! I could not help posting a reply although it is early for my plan. What plan?
My son is 2 month old and diagnosed atopic dermatitis. He has got it only on the cheeks and under the chin. Doctor recommended Bioderma preventive but they did not disappear. While searching the web, I found a herbalist in Turkey, he makes totally organic creams at home almost for 15 years and that cream completely eliminates infant eczema. He mixes essential oils eith herbs and makes a green mixture. It is not a white cream. I have been using this cream and the red dots have almost gone!
I am planning to introduce this mixture to the world with a blog but you seem to need immediate help, so i had to write. I can send you pics of treated infants.
Hope you did not start chemo:(

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