Four-year-old Samuel Campbell is a very hyper child; on the day of this interview he ran around a section of the Stabroek News’ office, engaging employees and boldly stating his preferences. But according to his mother Deosie Campbell that day was a rarity as many of his days and nights are spent crying out in pain.
Little Samuel has what local doctors have diagnosed as an extreme case of eczema; his mother said they have tried all the prescriptions and remedies suggested but instead of relief the child’s condition has worsened with time.
“I have tried everything and gone everywhere,” the frustrated mother of four told the Sunday Stabroek in tears.
“As a mother it hard to sit and see your child in pain and there is nothing you can do about it,” she continued.
She said at times when he is at school—Samuel attends Josels Educational Institute where his mom is also a Grade Five and Six teacher—he cries because of the pain and irritation of his skin and has to be taken out of the class.
“Sometimes I am upstairs and I would hear him screaming, the headmistress would sometimes take him in her office but as a mother to hear him screaming and knowing that no one can touch him because of the pain it is really hard,” the mother said.
Because of his condition, which sees his feet and arms being the most affected, while other parts of his body including his head also bear evidence of the condition, Samuel is always dressed in long-sleeve shirts and long pants.
As his mother spoke, he busied himself around the office but at times he appeared to pay attention to her words and at one time during the interview he said, “I don’t like it when my skin scratch, it is too scratchy.”
Asked to pull his pants or sleeves up the child boldly refused and his mother explained that he is very sensitive and always ensures that his skin is covered. “We don’t go anywhere, just school and church,” the woman, who has two older children and one younger than Samuel, said.
Campbell and Samuel are expected to leave Guyana today for the US where, through the assistance of Dianne Madray of the Caribbean American Domestic Violence Awareness (CADVA), he will see Dr Howard Pride, Chairman of Dermatology at Geisinger Medical Center in Pennsylvania, USA, for a proper diagnosis of his condition.
Campbell said she made contact with Madray after reading the story of teenager Sasha Bharrat, who went to the US through the assistance of Madray and received assistance for the skin condition she has, in the Sunday Stabroek. Sasha has been diagnosed with Autosomal Recessive Congenital Ichthyosis Lamellar Ichthyosis, which occurs in approximately 1 in 300,000 births. Recessive genes, similar to those that result in persons having blue eyes, cause lamellar ichthyosis. The genetic abnormalities result in the shedding of skin and according to information obtained online it occurs when both of a child’s parents carry a recessive gene; in such a case, there will be a one-in-four chance that their child will have the condition. The skin usually appears to have large plate-like scales which often are rather dark or brownish in colour. The scaling often involves all of the skin although the face may show milder changes. The condition usually appears in the first few days after birth, lasts for life and can be very severe. There are two variations of the condition; in one case only parts of the skin will be affected, while in the other every part of the body from head to soles is affected.
In Samuel’s condition his skin does shed as his mother showed this newspaper clumps of dead skins she is forced to sweep up at times, but unlike Sasha his affected areas—his arms and legs—are very dark and his mother said it is obvious that it is very painful.
Campbell said her baby was three weeks old when she realized something was wrong with him as he was held by someone else and when he was returned to her he had a huge red rash on his neck and face.
At that time, it was felt that he was allergic maybe to the cologne the person had worn but after this incident there were other times when he got the rash and Campbell said they stopped allowing persons outside of the home to hold him.
When he was six weeks old, Samuel developed the rash on his neck and he was diagnosed with eczema but it was at age six months when he stopped nursing and started eating from the pot that the rash got worse.
He was just getting the rash under his neck but when he started attending day care his mom said the rash spread to little Samuel’s entire body and she took him from doctor to doctor and changed “from one day care to the other because I was told that it was too much dust, carpet animals… The only private hospitals I didn’t visit was Mercy and Prashads, I even went to the Palms and visited the herbal doctor,” the mother said.
She also saw a dermatologist and was told it was eczema and the child was placed on Benadryl and he was prescribed with creams that had steroids but none gave the needed relief as it was all just temporary. He was also placed on antibiotics.
While Samuel had an allergy testing which turned out to be negative, Campbell said she was not pleased with the fact that doctor took the sample from an affected area of his skin instead of a part of the skin that was not affected and when she pointed out this fact she was told to return for another test.
“But I did not go back… I have had some bad experiences with doctors,” she said with a sad shake of the head adding that at one time when she visited the Georgetown Public Hospital she would observe the doctors doing research on their mobile phones before prescribing treatment which angered her.
“The hardest part is that he does not sleep at night. Right now, I am in pain because I can’t sleep; he is up crying for hours… hurting and I really can’t do anything to help him. I purchased one of those soft baby brushes but sometimes you can’t even touch him,” the mother said.
“Sometimes to tell you the truth I feel like I am going crazy, I can’t hold or touch him at times. You know what it is to have your child like that and you can’t help him, it is really frustrating because you don’t know how to help and you have tried everything,” the woman said in tears.
She said sometimes at night Samuel goes to sleep at around 11 and by 2 he is up again crying and he would return to bed around 5 but she is forced to wake him up shortly after to prepare him for school.
He has not had a bath for months because he cries out and Campbell said that she sponges him off the best way she can.
‘My scratchy legs’
Shown a photograph of his legs little Samuel was asked if he knew what they were and he said, “This is my scratchy legs.”
Asked how he felt he said: “I am not feeling nice, because I don’t like feeling scratchy,” before scampering off.
His mother called after him and just for about half of a minute he sat on her lap and rested his head on her breast. She wrapped her arms around him and the contentment on her face was obvious but the moment quickly came to an end when he jumped off; she attempted to pull him up back but he was having none of it.
It is his mother’s hope that when he is seen by the skin specialist Samuel will be helped as she pointed out that the condition is worsening as he grows older.
“I can’t take him out because people always asking questions and then they would tell me try this and try that and to tell you the truth I have tried almost everything,” the mother said.
At present, Samuel is off of all dairy foods, as was advised by the herbal doctor, and he eats mostly provision and peas but Campbell said the condition has gotten worse and the flakes “fall all over the house and he has his only little corner to sleep in.
“Sometimes for days he does not walk, he creeps and go where he wants or I have to lift him. And so when he is running like now I just leave him because there are days when he does not move and you have to do everything for him.
“I just want him to go back to the child who was active. Now many days he is one place and don’t play.”