My name is Danielle. My family and I live in Nairobi, Kenya. My husband is in the USA Air Force, and we are currently posted at the US Embassy here. We are in the process of adopting two little Kenyan Boys. Last Friday I took Isaiah (he is 13 almost 14 months old) in for a regular well baby check up. The Dr. noticed that his red reflux didn't appear normal, and recommended we follow up with an appt. to an eye Dr. It just so happened we know an American missionary opthmolgist who is here, so we took Isaiah to see him. He did an ultrasound, and tried to take some pictures of his eye (all while Isaiah was awake). At first he thought it was retnioblastoma, but after looking more closely he was undecided, though he still hasn't "ruled it out". He asked us to wait while he sent out emails with the ultrasound asking for opinions of some retinal specialists in the states, so we did. Please find the email I got this morning from him: ________________________________________________________
Giovanni & Danielle, Please see the message below. You could get additional information online about Coat's Disease, and I think it is reasonable to accept their opinion. There is a chance that the vision could improve with laser treatment, but it is not urgent and can be done in the next weeks or months. I will ask Dr. Kibata to do an EUA , because he is our retinal specialist at Kikuyu. Also, it is worthwhile to ask Dr. Nesbitt to do a TORCHES titer. I think this is relatively good news and you can relax a bit about his situation.
Here is the message that was below:
The consensus opinion of the five retinal surgeons at Walter Reed and National Naval Medical Center was Coat's Disease. Not much testing to do for this disorder. It would be unusual for childhood sarcoidosis which has isolated annular chorioretinal lesions. No one felt that it was retinoblastoma
At this point I have spent the last few days trying to warp speed our adoptions (which has completely drained me, as here things are pain stakingly slow) so that Isaiah can leave Kenya for proper diagnosis, and possible treatments. Now this Dr. is saying it isn't that urgent. I am going to need a letter stating the urgency in order to get a judge to give us a "compassionate hearing".
Saying we can wait a few weeks or months, isn't going to get him out of here for the treatment I feel he is going to need (here in Kenya, they can do an EUA- but they don't have the treatments available). If we can get an urgency letter, our lawyer said he could have him out of here in two weeks. Upon reading your site, I feel it is very urgent, but I am not a Dr. I just wondered if we could get any advice from you, is this something we can wait on, or is it as urgent as I feel?
Also, I wanted to tell you thank you for all of your hard work, for helping get the word out about this disease. We have seven children, five biological and the two boys we are adopting. We have never heard of this disease, or retinoblastoma. Isaiah's eye has been golden in all pictures since August- sadly, we thought our camera had a flash problem.
P.S.- I have also sent you a email, with this information along with a picture if Isaiah for you to see.
Danielle, If Isaiah's eye has been yellow in your photos since August, there is a reasonable chance that his retina is at least partially detached. This need to be determined and treated as soon as possible. I would strongly disagree with the notion that you can wait weeks or months to get treatment. Unfortunately, we are not doctors, so we cannot give you a qualified medical opinion. Can you get a second opinion from an opthamologist with experience in treating Coats' Disease?
Thank you for your reply. We have an appt. today with another ophthalmologist (I do not know if he has any experience with Coats Disease or not). We have a CT scan scheduled for Monday morning to look for any calcification. Unfortunately here in Kenya our resources are very limited. Yesterday we were able to obtain a letter of urgency from Isaiah's ped. I spent all day at our adoption agency pushing to get our last homestudy complete- I left at 7pm with it in hand, and I am sending it off via email to the agency in the states today. I think his best hope is for us to get him to the US as soon as possible. I will let you know what the Dr. today says. I am grateful just for the support and information on this board. Danielle
Hi Danielle, well done so far, just to let you know we have 13 months old son too and going to see specialists in London on 8th November, as it appears that him as well as our older 3 year old got Coat's.Keep us posted and make sure you have the brother checked as well, just in case.
Thank you for your encouragment. The Dr. cancelled the CT scan, and wants us to have an MRI ran on Monday. So we are doing that. Do you know if an MRI can pick up calcification the way a CT scan does? On Tuesday he is going to the third Opthamologist- the one we went to yesterday didn't even examine him. Looked over the reports and said, when will you be going back to America? I am hoping to get a better response on Tuesday. The TORCHES blood test has come back negative. Still working round the clock to get all paper work in order so that we can get him out of here. I will update next week on what if anything further we learn. Wanted to add- the other little boy (Levi) is not his biological brother, They are not related, but I am having him checked as well.
Just a quick note, our 13 months old son was checked today by Mr J Hungerford ( the best specialist in his field and a very kind man) in London and luckily he hasn't got neither Coat's or RB.There might be other ( much less worrying) problem with his retina so we were referred to paediatrician opthalmologists though.You can't emagine how relieved we are!
