Hi my name is Trina,
I am the mother of 7 yr old daughter Kamber (ttts survivor) and 4yr old son Clay.
I was wondering if anyone has had a similar experience or knew of any fairly current studies regarding the long term neurodevelopmental out come of twin-twin transfusion syndrome (ttts) survivors and preterm babies as well. Or were I could find more information on this subject.
More specifically I am wondering if babies and small children that seem fine at a young age and show no signs of developmental delays, may still have learning disabilities show up later in there life. (example 1st or 2nd grade)
My daughter has always been very bright. Even as a pre term baby she had very little developmental catching up to do. (As far as size, she had cot up by age two.)
As a 3 year old Kamber knew all of her letters and there sounds. At 4 and 5 she was reading "Dick and Jane" and other beginner books. She loved to read and was doing so well for her age. We began to see regression in kindergarten. She seemed to be slowly loosing ground with her reading. I thought that it was from less time spent reading and more time coloring and practicing ABC's in kindergarten.
By 1st grade Kamber had been completely passed up and was quickly falling behind.
She is currently in the title reading class yet continues to struggle with reading. Her reading teacher says he has really seen some ups and downs. Some days she is able to read well and smoothly and other days she is back to sounding out each letter and struggling on through. This seems to happen with any words. Even words she has seen often and has been able to repeatedly read with out hesitation. We also see these same ups and downs at home. One day Kamber is able to read so well and seems to understand and enjoy what she has read. Other days she just struggles. Even to the point that she forgets letters and sounds.
Her teachers agree that what she is going through is not normal, is not lack of trying, and is in no way a behavioral issue. The special education teacher at her school even recommended that we see a neurologist. With out knowing the problems the teachers and I have described to him, are doctor would consider are daughter to be a healthy normal 7 year old. But knowing that something is not quite right we have, with are doctor, explored other health possibilities including but not limited to diabetes, iron levels, and led poisoning. All of witch, have come back normal (as expected). She has also had one normal EEG at age 6. Are doctor has told us that even though an EEG is normal, this dose not mean that a child is not having neurological problems and he would like to refer us to a pediatric neurologist. (possibly looking for petty mal seizures).
Witch brings me back to the long term neurodevelopmental out come of ttts babies. At first I thought there really could be no connection. But, the more information I find, I wonder if it could. I wonder just how many ttts babies do end up with neurological problems (to what ever degree) and I wonder what new studies have found. This seems to be a very under studied area.
And the biggest question for me is if there can first be no signs of problems and then be problems. I guess there could always be problems arise that have nothing to do with ttts or prematurity, but I thought it was worth looking in to.
Any similar personal experiences, information or thoughts on were to look for information would be greatly appreciated.
Thank you for your time!
We are looking at possible eye and vision issues. At age 4 Kamber was seen by an Optometrist and her vision was fine. In November 2008, age 6, her vision was still good. But, we were referred to a Pediatric Optometrist to look at a possible wondering eye. He said it was not bad but if we noticed it getting worse to come back. We also have a 6 month fallow up appoint in Sep. to see if they notice any change.