First question: Can anyone tell me what to expect from a genetics appointment? We have one coming up soon and I heard the doctor is great, but I have no idea what to expect.
Second question: Same as above except for an ophthalmologist?
First question: Can anyone tell me what to expect from a genetics appointment? We have one coming up soon and I heard the doctor is great, but I have no idea what to expect.
Second question: Same as above except for an ophthalmologist?
Thanks! Hope everyone had a nice weekend...
I can answer the second question, but not the first one.
DS was born with bilateral congenital cataracts, so he's been seeing a pediatric ophthalmologist since he was a few weeks. He just had surgery last wednesday to remove his left cataract and have an IOL (implant) put in.
Why is your LO seeing an ophthalmologist and how old? The appointments really depend on what eye issue(s) the child has and how old they are.
Thanks for answering triplea598. How are the eye drops going for your DS? Any better?
DD has been squinting and blinking a lot. She will do it randomly, but mostly when she's trying to focus on something, like a book or a movie. Her OT and service coordinator from EI put the referral in. She's being seen in April. DD is 2.
ABA can't tell if its just visual stims or if she really has having trouble seeing.
Post by mrsbuttinski on Feb 16, 2015 8:54:54 GMT -5
Wise to get the eyes checked out. It's always best to be certain a behavior doesn't have a physiological antecedent before assuming it's a stim.
ETA: Genetics can be tough sometimes. Often geneticists can be rather abrupt when looking at kids's physical features as clues to underlying conditions. It can be hard to hear as a parent.
My DD just turned 2 and we've been going to the eye people since she was tiny. Her last appt was the first one where they actually tried to test her vision. They had her sit in a chair and name pictures on the wall, and apparently there was a matching option if she couldn't do that. They wanted her to then wear and patch and do it, but she would not. Also wanted her to do a test where she wears sunglasses, but she didn't do that. They didn't really care, and thought the 2 eye vision was enough for this appt. At visits before this last one, she would have drops, wait, and then the doctor would do a ton of holding lens up to her eye, which is how they can estimate vision. There was a fair amount of history and a short standard light-in-eyes exam that you probably have done at your own eye appts. Maybe some looking at cards, watch the puppy dance, etc. stuff that is painless. Perhaps it's because we go to a university, but we always see a resident or two, perhaps some kind of nurse, and then the doctor, so there is a lot of waiting and the appt can take a couple hours. It is a snack-heavy event.
Post by brachysira on Feb 16, 2015 12:26:37 GMT -5
Oh, and maybe bring sunglasses. If they use the drops, it's nice to have them. We rarely bring them and no one has ever told us to, but we always have the stroller with a shade.
Post by BostonKisses on Feb 17, 2015 10:12:54 GMT -5
Yes, get her vision checked. We knew we'd have vision problems because she had ROP, but we weren't anticipating things manifesting as early as they did, even with follow ups. She has fine motor delays as it is, but the delays were further compounded by the fact that she couldn't see what she was doing when it was a task that was close to her, she had a hard time discerning where to put things (like shapes in a shape sorter), and has issues with color contrasts. At her next follow up, I made sure to tell her opthto about all of this, and on top of the farsightedness progressing, we started having her wear glasses. She was about 2 when we did this, and we saw some instant improvements in various areas.
At this age, they use different screening methods, so it's not going to be like an eye exam for an older child, teen or adult. Our ped ophtho uses tools that look like prisms, various lenses, and different pictures to check her eyes. Once she was old enough to name shapes, she used charts on the computer screen across the room, and decreased the size until she couldn't make them out. Since she knows her uppercase letters, we use the more familiar letter based chart.
Yes, get her vision checked. We knew we'd have vision problems because she had ROP, but we weren't anticipating things manifesting as early as they did, even with follow ups. She has fine motor delays as it is, but the delays were further compounded by the fact that she couldn't see what she was doing when it was a task that was close to her, she had a hard time discerning where to put things (like shapes in a shape sorter), and has issues with color contrasts. At her next follow up, I made sure to tell her opthto about all of this, and on top of the farsightedness progressing, we started having her wear glasses. She was about 2 when we did this, and we saw some instant improvements in various areas.
At this age, they use different screening methods, so it's not going to be like an eye exam for an older child, teen or adult. Our ped ophtho uses tools that look like prisms, various lenses, and different pictures to check her eyes. Once she was old enough to name shapes, she used charts on the computer screen across the room, and decreased the size until she couldn't make them out. Since she knows her uppercase letters, we use the more familiar letter based chart.
I was going to say the bolded. Since my DS doesn't talk yet, the ophthalmologist just uses his tools. DS hates it, but it's just what has to be done.
No real insight into ophthalmology at a young age. But as for genetics, we've been around the block on that. The initial genetics appointment for my DD was very long. We first met with a genetic counselor who took a very long and detailed personal and family history and explained the general workings of the genetics department. We then met with the geneticist (as well as a fellow and a resident) who did a full physical examination and asked their own series of questions. We then talked about their various theories regarding DD's possible condition. We discussed testing option (we made no decisions at that point, but rather came back for a blood test later) and the geneticist made referrals to several other doctors (for us there were concerns about dermatology, neurology, and cardiology). It was a 2+ hour appoint for us.
As someone else mentioned geneticists are not known for being warm and fuzzy. They tend to be clinical and will point out anything they think might be an abnormality while searching for genetic clues. Our main geneticist is reasonably friendly in his approach, but still tends to be quite clinical. We've found that geneticists we've run into tend to rely on the counselors for the emotional processing of things.
1) genetics - I suppose it depends what your child is being seen for. Our geneticist was amazing. He only does pediatric neurology, mostly epilepsy. We went over DS's history, any familiar history of seizures. The doctor talked to us about the possibilities he was testing for. He explained what each mutation would mean to us. He also explained what the next step was if DS tested positive or negative for the mutations. After the office visit we had blood drawn and got the results back in about 4 months.
2) ophthalmology - we went thru ROP clinics as preemies. We had a follow up with DD and DS with a doctor at the children's hospital when they turned 1. The doctor used different machines to look into their eyes while they sat on my lap - very easy. We went to a local doctor (not pediatric specialist) when they turned 3. My DD was nonverbal at the time and they were...less than cooperative. It went fine. He looked in their eyes. They wore special glasses at pointed out the picture that looked 3d. I had no concerns and got an "all clear" from the doctor.
Thank you guys for all your thorough responses. I feel much better prepared or at least have a realistic idea of what to expect at these appointments. I appreciate you guys taking the time to answer these questions for me.
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