A Life For Ethan
Ok, so here’s our history. Born at 27 weeks my little Pea had a whole range of problems and was in and out of hospital for the majority of 3 years. During this time he began getting flare ups of what we thought was baby eczema which the GP treated with a range of emollients and moisturisers. It was then suggested that these flare ups were allergy related and so the testing began. It turned out Ethan was allergic to dairy and eggs and thus his diet was changed accordingly. Yet still the eczema continued. Only now the small patches of irritation had grown to large weeping, angry red areas all over his body. He would cry with the pain, we would be up during the night to cream and medicate him, he was dosed with strong antihistamines regularly during the day and night and nothing helped.
We were finally referred to dermatology at the age of 3 and Pea was diagnosed with Atopic Eczema and from there the fight really started. We tried every emollient, bath wash, shampoo; a whole host of steroids were tried to no avail, it was an endless fight to keep it under control. More allergy tests were carried out and found him to be allergic to raisins, dust, pollen, grass, nuts and fish; but in addition to this high sugary foods, including fruit also caused flare ups. Once again we were back on a restrictive diet and even underwent months of photo light therapy involving Ethan to stand in a giant UV light machine for 6 minutes three times per week and then be bandaged in wet bandages in between. This again proved futile.
We have spent a small fortune on homeopathic treatments, promised miracles and ointments all to no avail. We are now at the end of the road with the NHS.....at the age of 6 my brave soldier is on 2 different potent creams which are prescribed only to adults (which is a fight every time we try and collect them from the pharmacy) and chemotherapy to suppress his immune system and so far this isn’t working. It is heartbreaking to see him in so much pain despite his treatments. If this doens’t work there are no more options on the NHS except to just keep upping the dose.
And so this is where we are now: Ethan is at the point where he can’t go to an indoor play area due to the dust; he can’t play in the garden due to the grass; he can’t go to gymnastics which he loved because the bandages restrict his movement and the dust on the floor caused his fingers to flare up; he can’t go swimming as it hurts him so much and he bandaged too often; he can’t have a birthday cake, or chocolate or even a banana; he has to have constant blood tests because the chemotherapy causes kidney and liver failure; there is a chance he will never have children because of the medications he is on; he does not sleep properly due to the irritation and pain and so he is constantly tired and grumpy; he is struggling in school and even had to re-sit the year because he attendance is so low due to his illnesses; he has been in cold, wet bandages for most of his life; he screams whenever I bath him as it is agonising for him to simply sit in water; he cries that he is ugly; he has no self confidence!!! And for a mother to watch this it is heartbreaking. It kills me every time I bathe and dress him; I cry with him when he says he doesn’t want to be Ethan anymore.....this disease is controlling his life.
But something can be done – I am seeking assistance in raising funds to provide help and relief to this brave little boy. There is a treatment which is provided as standard eczema treatment in France, however as someone from UK we need to pay for this. The whole treatment plan is supervised by a doctor and has helped several other children in Ethan’s situation. I am asking that you please donate whatever you can, no matter how small.
A huge thank you for taking the time to read our story
Sorry it has been a while. This last year has been very crazy. Last May, after another mistake at school meme decided to home school me so we have had to focus on that for a while. I am happy to say I am doing very well at home school. My teachers are happy with my progress and thanks to memes patience I can now read and love reading David Walliams with her. I have started kuk sool which is martial arts and I really love it. I have made friends at home ed too and get to spend time with meme and my new cousin Tahlia who likes to pull my hair. Since I've been at home my health has improved loads and I've actually grown bigger and stronger. My lungs have been much better Thanks to all my meds working.
Everything was going great! Up until last week. Then after a few parties playing in the grass my eczema flared and got infected so I needed antibiotics. Then my herpeticum flared up so I needed aciclovir. Now my dyshidrotic has stated to flare so meme has been giving me plenty of meds and let's me rest between lessons so it's not too bad.
Thank you all for still following and messaging meme.
Love you lots
Now I have been diagnosed with a 3rd type of eczema called eczema herpeticum. It has made cold sores come all over my body. The first time I had it they thought it was shingles, the second time they said it was herpes virus but now they know what it is. It is very sore and has made me feel achey. I am very sad and weepy but meme said it's probably because I am so tired and my temperature is high. I don't know if she's right but all I know is I wish it would go away as I am fed up being in pain. It's my birthday soon so I really hope it goes by then
Thank you for reading
Love pea xx
Love Ethan xx
Hope it gets better for my swimming lesson at the weekend because I had to miss it last week with this silly skin
Thanks for reading
Love pea xx
Hi, I resd this esrlier and couldnt get you out of my head all day. My heart goes out to you all as my child suffered EXACTLY like Ethan for 17 years - from birth until 5 months ago. For the last 3 years they were also on immunesuppressants with little success and we'd exhausted all NHS options. I know you will have had a lot of well-meaning advice over the years (I know we did! ) but please please PLEASE look up Dr Aron treatment support group on Facebook. Our lives have utterly changed and my child's skin is silky smooth for the first time. It's not a cure, cos as you know eczema can't be cured (yet!) but is a highly effective, life changing and stunningly simple management. You have nothing to lose by looking it up and reading the stories. Loads of pics and progress reports. Our life is totally changed. Eczema doesn't rule our lives anymore. I promise you won't regret it, I just wish I'd find Dr Aron years ago so my child didn't suffer as they did for 17 years. We've even been discharged from the dermatologist and the GP is on board with the treatment. I'm happy to answer questions. DM me on FB if you want. Thinking of you.
I am so sorry your little one (and your family) is suffering so severely through this. I here Avene in France truly helps calm a lot of the symptoms so I hope Ethan finds some relief in this. I'm guessing he's been checked for any auto-immune disorders as well as if he has an infection. Just so heart breaking. I am going through TSW (topical steroid withdrawal) and see so many children suffering through it as well and regardless if that is what your son is going through or not, I send so much love to your courageous family. There are so many things I could share with you but I know this process is overwhelming and I don't want to be one of those that causes anxiety. My website is brwren.com if you ever wish to look or chat. Big hugs. xx
Hi I'm so sorry your boy is suffering. Considering he's been using many steroids he is likely suffering. From red skin syndrome. My daughter was and her skin looked like your son and everything u said about his pain and itching also was the case with my daughter. You have to stop and look up red skin syndrome and topical steroid addiction and itsan.org. If your son was like my daughter which I think is 99% chance the treatment is not medical but medical is causing the damage. Trust me do some research in this and you will see a lot of owople going through the same. Please do not hesitate to reach out. Also contact dr rapport , dermatologist in Beverly Hills USA. He has healed 1000s of patients like your son. He can talk to your drs and help you. Best and courage, as a mom I know you are also suffering trying to help heal your baby
Ethan looks exactly like I did 2 years ago. It is likely he is going through Topical Steroid Withdrawal (steroid creams stop working and skin becomes progressively worse). The only cure is to stop all steroids immediately. There are excellent FB support groups on this with thousands of people from all round the globe. Docs and Derms generally will not agree at all but I went from full body to clear in 18 months. Long torturous road. Please read the www.itsan.org website and view this blog http://isaiahquinn.blogspot.ie/.
Hi, Ethan looks like me in his pictures. Please consider he might be having TSW... Doctors dont believe in this condition, but it is real.. https://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/ Please take a loot at the facebook page topical steroid withdrawal support group.. Big hugs n hope Ethan with get some relieve soonxx
Agree with many of the comments. Please look up Itsan. Your wee boy looks like our boys did. This is our story.. www.ouritchyboy.blogspot.com TSW is one hell of a hard road. Totally worth it. One of our boys is still on immunosuppresants and ones just finished. Wishing your wee man good health xx
Had the same conversation with my son once. I wrote about that experience just this morning. Give Dr. Aron a look. You won't regret it. It just works. Join the group here. https://www.facebook.com/groups/draron
prayers for your little boy. Its for any parent to watch their baby suffer this way. Topical Steroid Withdrawal can help him out and I know how much of a warrior you have to be to fight this battle because I myself am going through tsw but it gets better. itsan.org will give you more information if interested. I hope he finds relief soon.
Dear parents of Ethan: I saw the news article last night before going to bed. I could not sleep most of the night as Ethan was on my heart. I then wrote a special blog post for you guys: http://lightsupnorth.com/2016/09/650/ Please read it. I know you have tried a lot but maybe there is something that has helped my sons that you may not have tried. Praying for you all. Erin
In reading how severe your son's eczema is, I suggest at least trying the skin serum Tepezcohuite from Mexico? It is used for burn victims. I used it for my eczema and it cured it. My cousin has severe eczema and it is helping her tremendously. It can be ordered online. It comes in pure serum, cream, soap and powder forms. I use the serum and cream. Maybe it can provide some relief and get away from the chemo meds. Best wishes.
Hi, I hope he finds some relief with the chemo. I sort of understand what you are going through - my husband was ill for 5 years with virtually the same thing. It must be worse though when its your child. We tried everything, oils, ointments, creams, steroids, UV treatment, immunosuppressants. His skin looked like he'd been burned and he lost his career due to the illness. Anyway, the reason I comment is to suggest (and I realise that you've probably tried a million and one things like we did) but have you tried Aveeno? Its an oat based range of products like bath oil, cleansers, creams, shampoo etc. You an get in on prescription (we did through Broadgreen Derm department) It was the only thing in the end that helped his skin settle (in addition to immune suppressants). It was a long slog but his skin has been in remission now for over 2 years and he can finally wear shoes again (he couldn't for years as when his skin warmed up in shoes it would blister and crack). Apologies if I'm telling granny to suck eggs, and I hope he (and you) gets some relief soon. Take care:)
Please pm me via Facebook. I am certain that I can help. Many people have been helped here in Ireland . Thanks.
Please message me on Facebook Melissa James I really need to talk to you!!
So sorry for the suffering your son is going through and the hardship it's causing you as well. Further to what Voula said, I urge you to look at Dr. Marvin Rapaport's website: www.red-skin-syndrome.com and especially his current blog. He has cured thousands (including me) of eczema sufferers around the world. He can help you. His contact information is on his website.
PLEASE as someone already wrote below contact DR. ARON (there is a group on the FB (https://www.facebook.com/groups/draron/) He helped so many people withsevere cases of eczema like your son has. Please look at the pictures of people whose kids have their life back. But hurry if you want to contact him and register for treatment since he is making a pause soon till beggining of 2017. PLEASE PLEASE take a look. Good luck and all the best to you and your wonderful brave boy!!
Please read https://www.facebook.com/UnderstandingRedSkinSyndrome/posts/512151952310582?notif_t=page_post_share¬if_id=1472749462060184
Please look into Dr. Aron's treatment. Google him. He has treated so many children with eczema like this who have their lives back now!