Week of July 23rd: A week after Danny was born he still had only peeked out of his right eye a couple times. The eyelid always looked totally relaxed even when the other one was open. After looking online we thought it was probably ptosis, but since you can't really find anything, we weren't sure. We went to his pediatrician who didn't know what it was and sent us to an opthamologist. They "couldn't" get us in for 3 weeks.
August 14th: Dr. Felt, the opthamologist, thought that his eyelid looked swollen. He said that is not how ptosis usually presents so he wanted us to go to a pediatric specialist to see if there was a mass in his eyelid keeping it from opening. Dr. Felt said he wanted to get it checked soon so they were able to set us up for the next week.
August 22nd: We went to Primary Children's Hospital and saw
Dr. Hoffman who thought there might be a mass, but since the treatment was steriods, wanted to be 100% sure. He said we needed to get his eye open soon, though, so that he could develop vision there. He had us schedule an MRI. Up to this point, we didn't have insurance and were paying cash but my husband, Travis, had gotten a new job with great benefits and those started Sept. 2nd so we asked if it was fine to wait a couple weeks (like they would have got us in sooner anyway...)
and it was. He said he would call us after the MRI to see what the next step would be. We also were told to patch his good eye a couple hours everyday so he could develop vision in is right eye. (We tried this a couple times, but newborns don't stay away a couple hours at a time. If fact, Danny, at this point, barely stayed away for an hour. The couple times we did try to patch seemed pointless. The patch didn't stick good and he would just close the droopy eye and fall asleep.)Sept. 4th: Danny had an MRI of his right orbit to check for a mass or nerve damage, like signs of a seizure. They had to put him out and everything, and even after insurance it still cost almost $600. While in the recovery room the doctor who performed the MRI came and told me everything looked great and there was no mass or nerve damage that they could see, only superficial swelling. Great news except we didn't know where that left us on getting his eye fixed.
Week of Sept 11th:We waited a week before calling Dr. Hoffman to see what was going on. We left a message and they next evening had a message on our phone from him that said he would try calling again later...
Week of Sept. 15th:We still hadn't heard from him so I called again and he was on vacation for a week so I left a message and they said he would call me when he got back.
Week of Sept. 22nd:After STILL not hearing from the doctor I called again and said it has been three weeks and I still didn't know what was going on with my sons eye after his MRI. I sort of pushed them this time and the nurse became an advocate for me but said they would have to find his chart and then call me back. Half an hour later the docto
r called. "We really need to get that eye open," he says. Yeah, thanks for calling me back so soon so we could do that, idiot. Anyway, he said that just because the MRI didn't show a mass doesn't mean there isn't one so he said scheduling would call me in just a minute set up an appointment with someone for an ultrasound on his eye, to be followed immediatly by an appointment with him. They did call right away this time and told me to go to Dr. Harry, then Dr Hoffman on October 1st.October 1st:I showed up at Dr. Harry's office and they told me I was scheduled for the day BEFORE! I said, I know they told me today. She checked her schedule and said they could fit us in at the same time. I asked if she could call dr. Hoffman's office to see if they also had me for yesterday. She was really sweet and called for me. They did have me for the day before but said they could fit me in at the same time my appt was. Funny how if you schedule before it take weeks to get you in but if you just show up they can just get you in right away... Dr. Harry did the ultrasound. He just rubbed the tool on his eyelid like they do to your belly when your pregnant. He said it looked normal and sent me to the next doctor. Doctor Hoffman decided if there was no mass, the swelling was irrelevant and it was ptosis. He wanted to get us scheduled for surgery right away and sent us to his colleauge who specializies in children's opthomology and plastics to have him look at it and get us scheduled. This doctor was at Moran Eye Center which is connected to Primary Children's Hospital where I was. They were also able to get me in right away without an appointment. He looked at his eye, took pictures, and told me about the procedure. Then we scheduled Danny's Frontalis Sling surgery for October 29th (which I made sure was the earliest they could get me in)
7 comments:
Hi Tiffany,
thanks for sharing your son's story. my daughter was born with congential potsis(we did not know this syptom at frist) and almost everyone,even my pediatrician kept telling me that the eye will be open just sooner or later. after 6months had passed, her left eye was still very small, our pediatrician had finally refer us to the pediatric opthomologist and start patching her good eye. she is now 2&1/2 year old and still doing patching, the opthomologist has told us that she is old enough to do surgery. I would like to know how your son's after surgery care, is it difficult to take care and is his eye opens when he close his eyes to sleep? and does his eye blinks normal?
hope your little guy is going good and he is brave!
thanks!
kai
I forgot about posting about his recover, but I've added more now. He does sleep with his eye open, but lots of kids do so its nothing to worry about. He tries to blink, but doesn't do it all the way. It kinda squints shut a little. If he wants to close his eye, though, he can get it shut, especially if he's mad.
Hi Tiffany'
I am 48 years old and have a severe ptosis at my right eye.
Your experience inspires me and I have decided to look for a surgery.
I am in Washington DC area and i hope i will find a good praticien
Thank you for sharing
Kokouvi
Hi Tiffany,
Danny is a beautiful little guy. It's great that you were able to get his ptosis corrected so he can use that eye to see.
Our 4 month old has bilateral (both eyes) congenital ptosis. His eyes do open but only about 1/2 way. We expect him to have surgery sometime between September 2009 and March 2010. Of course, we're concerned parents who, like you, have been looking for as much information as possible. Would you be willing to engage us in e-mail communication so we may ask you, as a parent who has gone through this already, some of our many questions? Is so, please e-mail us directly with "Ptosis" as the subject. Our e-mail is shawnyl8@hotmail.com. Thanks for considering it:-) -Susan & Shawn
My son Ethan was born 10 years ago with congential ptosis in both eyes.It was a nightmare from the beginning,we were scared to death because we didnt know what caused it,I had 4 other children with no problems.He has had numerous surguries and one eye is always closed more than the other one.They have done the permenent surgery but it seems to look worse as he grows.His vision is fine but his eyes water alot,he takes alot of ridicule at school and people stare at him alot,he has a hard time with that.Im hopeing that one day he can just look normal.
my daughter is getting her surgery nest week and im scared for her shell be an hour and half away from me shes only 11 months old..shes was born with congenital ptosis everyone always says she looks tired im like no and i have to explain and there liek oh..i feel for her im worried even with surgery she'll get made fin of at school....
thanks tiffany for you story my daughter was born with the same thing ,i was in a head on collision when i was 5 months pregnant when she was born her eye was completely shut she had her first surgrey(sling procedure) at 3 months so she wouldnt lose her vision .since birth her right eye looked as if it was swollen shut, thats how severe it was. With seeing about 3 different doctors a doctor at a childrens hospital order a mri an surgery , he said once the sling was in the swollening would go down.The mri showed there was trama to the right side of her face which explained a stiffness of her cheek.so after the surgery she seemed to be so much happier. but the swelling hasnt changed at all which isnt a big deal im just happy see can see. GLad to see im not the only one going through this with their child it isnt easy.
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