My little Mamushay has an array of issues. I was told by my agency on several occasions that Mamush's eye problem resulted from a parasite and that he had been treated for it. I'm not sure where they got that information since I never saw a profile on him. I was also told that it was AWOP's responsibility for his medical. You'd think that my agency would ensure that he actually had a medical assessment when they took responsibility of him... Or is this another case of incompetence like Maritu's story? I don't know the answer, but I can say it's bad business... So, what's going on with Mamush? He has a congenital eye problem called coloboma. He never had a freakin parasite! You can tell because he has no residual inflammation in his eye that would be expected had he had a parasite. He is blind in that eye, and it is not treatable. This wouldn't be too bad, and the outcome the same as our worst case senario if his "parasite" diagnosis were true, but a coloboma in a child is indicative of other problems. Now 2+2 is adding up. Here is some information on this condition:
What is Coloboma?
A coloboma is a gap in part of the structures of the eye. This gap can be large or small and is normally in the bottom part of the eye. A coloboma is caused when a baby’s eyes do not develop properly during pregnancy. The eyes develop between the fourth and anything up to the fifteenth week of pregnancy, though development is usually completed around eight weeks. This condition occurs in about 1 in 10,000 births.
Coloboma can affect one eye (unilateral) or both eyes (bilateral). Coloboma can affect a number of different parts of the eye. A coloboma does not mean that there is a hole in the eye, but that certain structures or parts within the eye did not fully form.
Which parts of the eye does a coloboma effect?
A coloboma can affect the iris which is the coloured part at the front of the eye. It can affect the lens, the part of the eye which helps focus light onto the retina. Coloboma can also affect the choroid which is a thin network of blood vessels which help to keep the retina healthy. Finally, it can affect the retina at the back of the eye. Very rarely coloboma can also affect the optic disc or the eyelid.
Does it only affect the eyes?
Sometimes children with coloboma may have other problems and some 'syndromes' which include coloboma, such as CHARGE, a rare condition which stands for:
C - coloboma
H - heart defects
A - atresia of the choanae (problems with the nose passages)
R - retarded growth and developments
G - genital hypoplasia (undescended testicles)
E - ear abnormalities.
Now when I said that 2+2 was adding up, that was because Mamush has most of the Charge problems... I believe this labels Mamush as "special needs." This makes my heart ache for him. It also upsets me because our fees should have been discounted. Now, I guess I'll see how my agency handles this situation. I'll post if they make good on their claim of discounting fees for special needs children... If not, I've got a loud voice... I think this is the test of a good agency, but until then, it looks like we spend our days in the offices of our pediatrician, ENT, urologist, pediatric opthamologist, and cardiologist.
So how's Ms. Maritu? Well, her TB test was negative. So, she never had a difinitive diagnosis of TB. She has also had a negative TB test, negative x-ray, and 3 negative gastric washings. What more could the Health Department want? They've been calling the house but don't leave messages. I've called and left voice mails to no avail, so we'll see how this ends. Surely, they will accept all of this proof and not make her take any more medicines. She has already been exposed to 4 TB meds for a month that she did not need.
On a good note, we evaded lice, scabies, and ring worm! (but not Giardia) Yea!!!