To the average person, Suryaa looks normal and is very intelligent and active.  However, most of the time he lives in pain from recurrent mouth ulcers. When Suryaa was about three months of age, it was discovered that he had ulcers/lesions and inflamed lining on the sides of the pallet to the back of his mouth similar to that of a ‘burst mouth’ as well as other symptoms such as elevated body temperature (reaching 38 degrees Celsius), large round swellings on the inside of the cheeks, small bursts and swellings on the inside of cheeks and at the corner of the lips, pin hole red spots on the tongue and inner cheeks, sore throat, red areas on the roof and other parts of his mouth.

Some of these symptoms occur before the areas burst open. He has been to several doctors both private and public. Blood tests have been done in both Trinidad and abroad. However, from the results of the blood tests, it was discovered that he has a low neutrophil and immunoglobulins igG, igM and igA. Due to this immunological disadvantage, he can be quite vulnerable to infections, viruses and diseases.

Suryaa has been on medications every day since three months of age and has continuous symptoms related to the ulcers. Among the list of medications tried are steroids, antivirals, antibiotics, pain killers and local anesthetic/antiseptic. When these ulcers flare more than usual he is in extreme pain and is unable to eat and drink.

The Trinidad and Tobago doctors are unable to say why and how my son is suffering from these symptoms. The tests and specialties required to find out what has and is happening to him are not available in Trinidad.  His local doctors advised us to take him abroad, and they highly recommended The Great Ormond Street Children’s Hospital in London. Together with loans, some public funding and a contribution from the Ministry of Health, we took him to this hospital in 2010; however, all of the tests were not done because of lack of funds and he must return as soon as possible to prevent further complications.

The estimated cost of the travel, hospital services and stay is approximately $30,000 pounds. The Trinidad and Tobago Children’s Life Fund is not supporting my son for the medical tests and investigations needed to finish his evaluation. The officials from the fund stated that my son does not fit their profile because they do not support kids for medical tests and investigations.

I need help to get new tests done so doctors can reach a diagnosis. It  is difficult not knowing what is happening to Suryaa and it is frustrating and heart breaking to give antibiotics and painkillers to my baby every day.  If anyone can get my case to doctors in the United States, I would appreciate it or if anyone has ideas on what this rare condition might be, please let me know by emailing me at: rowtiesingh@hotmail.com.

4 thoughts on “Mom Seeks Diagnosis For Baby’s Undiagnosed Rare Disease That Causes Painful Mouth Ulcers”

  1. Dear Global Genes Project,

    Thank you for posting this family’s story. Another family that our org, The NOMID Alliance has been assisting in their efforts to find a diagnosis for their children found this story about this child and shared it with us. We were able to connect with the mother of this child, and per the request of the family, we have been able to facilitate their contact with some expert doctors in the US at the National Institutes of Health (NIH) that are willing to help with this child’s diagnosis and care. The family is so thankful that they are now getting help from some specialists that may be able to help this child. We cannot thank you enough for posting this story for people to see, so this family could get help. Thanks to the families that are so supportive and caring to look out for others too.

    Sincerely,

    Karen Durrant
    nomidalliance.org

  2. Karen, this is incredibly comforting news. Unity creates hope and collaborative efforts are the core to ensuring all patients have the ability to find the supportive assistance they deserve. Providing awareness is key to our efforts. Thank you for sharing this wonderful news. And please feel free to keep us posted!

    All our best.

    – The Global Genes Team

  3. Rowtie Singh says:

    Thank you kindly,we are still in the process of getting all medical records it is taking longer than expected then we have to organize some money for visa, airplane tickets sustainance etc money is a great keep back.thank you again Global Genes and Karen.

  4. toni seddon says:

    My 6 month old son is currently experiencing exactly the same mouth sores for the last 4 months. Do you have any information on a diagnosis and how it was reached and treatment? I’m desperate to help my baby now

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