NOAH AOC

Hi all,

I have been reading posts for a couple weeks now. My son Liam is 3 months old today and was diagnosed with albinism at his 2 month appointment.  I have been reading the other post from parents with a new diagnosis and learning from what everyone has said. We have his first appointment with a PO (dr. yoon) at childrens memorial hospital here in chicago at the end of next week. I am hoping for some insight on what to expect from the PO appointment (what can they tell at 3 months?) and what questions should I remembver to ask? Does anyone else have experience with doctors in Chicago (recommendations?).

Thanks so much!

Nicole (Liam's Mom)

 

 

Nicole, welcome to NOAH and congratulations on your new little one!  The PO will most likely dilate Liam's eyes for a better look in order to confirm the albinism diagnosis.  He will look for things like iris transillumination, an underdeveloped fovea (retina), decreased pigment at the back of the eye, etc.  He will also check for nystagmus, which you should be able to see yourself if he exhibits it (back and forth eye movement).  As far as how well he sees, the PO is not going to be able to tell you much at all at this stage.  He will get some initial impressions and then follow his development to watch for strabismus (crossed eyes), amblyopia (lazy eye) and abnormal head tilt (null point).  I don't have any recommendations for the Chicago area specifically, but if you e-mail Lori at info@albinism.org, she can put you in touch with other families and people with albinism in your area.  Let us know how the appt. goes!

Hi, welcome and congratulations on your little boy! I hope his first appointment goes well. We would love to hear how it went. I think Brittany covered most of it but let us know if you have any more questions. Roxanne

Hi Nicole,

Congrats on baby Liam! 

My son was just diagnosed last week at 11 weeks of age, so our baby boys are very close in age!  I don't have much advice, but wanted to throw my support your way.  The first PO we saw (in Kansas) was not very helpful, so we are seeing a second one (in St. Louis) next week.  At Jack's first appointment, they dilated his eyes and also tried to get him to follow a light, follow a moving object, etc.  I was very worried because he didn't follow anything, but then I realized that he's also very young, so it's hard to know if he's just a little behind or he truly can't follow the object.  We set up early intervention services for him, and his vision therapist evaluated him today and says he will learn to follow objects soon enough.  It's great that you're getting help for him so early...be sure to ask your PO about getting Early Intervention set up for him. 

I was VERY upset when the PO told me that Jack was blind...then I found out that it is a common practice to declare them legally blind so they can get the services they need.  Unfortunately, the PO can't really tell at this age what the baby can see, but as he gets older we'll know more about his vision.  So if they tell you your son is blind, just know that it's really a guessing game at this point as to how much he can see, so they may want to state that he's legally blind and then change it later when they have a better understanding of what he can see.

I wish I had more insight to offer, but at this point I don't know much, either!  I'll look forward to hearing about your appointment and what your PO says.

Amy :-)

We are taking our 4-month old son Neal to see a PO this afernoon, in about a hour. We saw an ophthalmologist when he was 1 month old. The dodctor isn't a pediatric specialist, but he did dilate his eyes and checked to make sure there is no pigment at the back of his eye.  Today, we are going to see a PO so hopefully she can tell us more.  Will keep you updated.

Just came back from our first PO appointment at the Hong Kong Eye Hospital.  Neal did a great job today and was cooperative throughout the whole process.  He also didn't fight against his sunglasses.  He was so cute with the sunglasses that everyone was looking at him with a smile.

Dr. Fan is so nice and patient and knowledgable. We are so glad that we found her.  It's a long process. It took us about 3 hours to complete the whole process with some wait time.  When we first went into Dr. Fan's office, we basically told her everything that we knew about Neal, his condition, what we had learned about albinism and its potential impact on Neal's vision (nystagmus, strabismus, null point and the whole 9 yards).  I'm sure she thought we were very well informed and didn't get offended at all (some docs seem to get offended if you talk too much :). 

He then sent us to another doctor, who is also very nice.  By this time, Neal was hungary so we fed him there. Immediately after he is done, we told the second doctor that Neal was ready.  The doctor first used a big white cube with a large upper case E on it to check whethe Neal is able to follow object well, which he did.  He also tried to see how far he can see. It seems Neal stopped looking at the object at around 12 inches.  The doctor also used a flash light in the dark to see how well he could follow. Neal did that with great ease. The outcome is really much better than we thought.

 The doctors then had Neal's eyes dilated.  Thank god, he started sleeping at this point and dilating drops were easily administered.  15 minutes later, just as the dilation was in full effect, Neal woke up just ready for the eye exam.  Dr. Fan looked at his eyes through some instrument.  The conclusion is that he has slight far-sightedness and slight astigmutism, which is not unusual even for normal-sighted children of his age.  So no glasses are needed now. 

Dr. Fan then told us that they can perform the Keysanbaum procedure later if it's needed.  When we mentioned tenotomy and Dr. Hertel, she doesn't seem to be aware of it. But she said we should keep an open mind about it.  Basically, she said all the right thing a good doctor should say. 

Even though HK doesn't have early intervention services, but a local organization provides assistance to visually impaired children so that's the best news we got today.

 Overall, it's a great experience with knowledgeable and genuinely nice doctors. The results were much better than we expected too.

I am so glad to hear that Neal had a good appointment and that there is some assistance available to him. I am sure that is a comfort to you.

 Hi my name is Nicole (I see another Nicole on this thread) so everyone can reffer to me as Nicki. I just joined a few minutes ago and am excited at all the information provided by this great site. I am a mum of 3 and foster mum of two siblings, a five year old girl and her 11 week old baby brother, who she is very proud of. Ricky was diognosed 2 weeks ago with OCA. Does any one know if this is worse than OC for an infants vision? 

I was told by the Pediatrician Opthalmologist that Ricky can not see much at all right now, but will reassess him in 6 months time. Dr Forrest thinks he is very far sighted as well and will need glasses.  He reffered me to a low vission clinic that is attached to the education system here in Brisbane Australia. Many things made sense like little Ricky being photo sensitive, so with some small changes life is not as streesful with a screaming baby. Once I bought him some sunglasses he stopped screaming every time I took him out side.  

Nicki.

Welcome Nicki! Bless you for fostering those little angels :) OCA does vary greatly, but all forms of albinism do have significant vision impairment. My son appears to have teh "worst" OCA1a, and his acuity with glasses seems to be at the lower end of the range as well, but you would not know how bad it is just watching him play and be a kid. What you were told sounds very typical for an almost 3 month old. My son showed no real signs of usable vision until around 6 mos, and got his first glasses at 9 mos. He is almost 5 now, plays soccer, rides horses, does gymnastics, swims...... For now, keep light behind him, my son saw BRIGHT green and yellow first (think almost fluorescent--the bright tropical colors) Slowly put toys close to his face, about a hands width away, and move them slowly to see if he starts tracking. I am not in Australia, there is a group there, the Albinism Fellowship of Australia that would be of great help to you with what resources are available. Good Luck!!

Bless you. As a former foster parent I know what your doing is extremely hard and very honorable.

I'm not too sure what OC is. I know OA is ocular albinism. Which I believe can be just a serious visually as OCA.

My daughter has OCA2. Her hair is darker grey as that is where she has pigment. Her skin and eyes are typical of a child with OCA1 I have been told, but less eye muscle issues then OCA1. She is still legally blind.

I'm am glad your getting the services now and I am sure you will find somone from your country that will be able to offer some more specific advice. Good luck and welcome.