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Avastin AND Retinopathy of prematurity

GrammaK
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My beautiful, handsome grandson was born prematurely on 2/16/09 at 24 weeks gestation at St. Joseph’s Women’s Hospital in Tampa, FL. He will be 12 weeks old 5/11/09 (36 weeks gestation). He has been diagnosed with ROP. As of 5/6/2009 : Stage II-III no plus, 1-2 clock hours-OD & 2-3 clock hours-OS. On 5/4/09: Posterior zone 2 stage II-III, no plus. He has another eye exam tomorrow. We are trying to find out where he could get the Avastin injections vs. laser surgery if he progresses to the stage of needing intervention. This hospital does not offer it. Do we need to apply for an ongoing clinical study in order to get the Avastin injections? Any information would be much appreciated!

Explore topics in this discussion:

Retinal detachment Surgery Retinopathy of prematurity Avastin

11 replies

AnneV

I don't have any information about Avastin. However, my grandson is also at St Joseph's Women's Hospital. He was born at 25 weeks and tomorrow will be 4 weeks old. I will be very iterested in what you find out.

lola_west

Hi,
don't know about Avastin, sorry, but probably give you some hope. My 25-weeker also was diagosed with ROP - stage 2 zone 2. He didn't have surgery while in the NICU, but we have had 6-8 follow ups with ophtalmologist after NICU stay, every 2 wks.. My son's ROP resolved without any medications given... Now we have follow-ups every year, but doctor doesn't see any problem. He told us that probably Johnny will need the glasses when he will go to school, but for this time everything seems to be ok.

God Bless your little one and best wishes,
kathy

GrammaK

Lola . . . That is good to hear. Thanks so much. Of course we are always thinking positive and wishing the ROP to resolve on it's own! (Although, it never hurts to have a backup plan).

Myangle

hey grandma i'm a 22yr old women of a former 26weeker 1lb 9oz. and she was dianosed with numerous condition as well as ROP stage three in bothe eyes and it resolved on it's own but she still had some drifting so on 11-6-08 she was 14 mos. and had muscle eye surgery it went extremely well she was out the hospital the next day her eyes were blood shot red for about 1 week and now she 20 mos. and her vision is great just saw the opthamologist 4 days ago no glasses needed so if in the future this does come up for your grandson to have surgery knw that he will be fine it's a common procedure. It's a a scary rollercoaster with micro preemies but everything works out for the best in the end believe me i've been through EVERYTHING and look at my fat momma now..Smile Good luck

bjlee79

I was also looking for information on Avastin and tried to find everything that I could. My son is a 24 weeker at Health Park in Fort Myers, Florida. He was diagnosed with stage III zone I ROP. I called all over looking for more information and the only clinical trials that I was able to find out about were in Texas. So unless we were going to take Caleb to Texas it wasn't going to happen. My worry about the laser surgery is that so much of my son's eye would have to be operated on. But as of today Caleb is 17 weeks old, 1 week adjusted, and is getting eye exams monthly because his eyes have been doing so much better since surgery. Just keep praying, because it works.

figs337

I never even knew that there was a different option other than the laser surgery! Our lil miracles were born on the same day!! I gave birth to my 30 weeker on 2/16/09!!! His eye exam were always normal , with the exception of immature until about 2 weeks ago. Jake was just dx with ROP Stage lll zone 2 with active dieases and if it doesnt start to resolve by wednesday morning at his next eye exam we will be scheduled for laser this friday!!!

GrammaK

If you click on GrammaK to get to my profile you will find my links at the lower left of the page. The bottom 3 links have to do with the ROP-Avastin clinic trials. Only 50% enrolled will get the injection though. We are trying to get in the trial now . . . waiting for answers. Today our little guy's eyes are worse, 4-5 continous stage III OD-preplus
7-8 continous stage III OS-plus, and they are talking surgery Wed or Fri.
http://clinicaltrials.gov/ct2/show/NCT00622726?term=Avastin+AND+Retinopathy +of+prematurity&recr=Open&rank=1

GrammaK

bjlee79 - There is a different trial for babies that have had the laser surgery.

http://clinicaltrials.gov/ct2/show/NCT00702819?term=Avastin+AND+Retinopathy +of+prematurity&recr=Open&rank=2

Miami, Florida is on the list, but not yet recruting. Email or call them a call if you think your little one might qualify.
Sorry, I am hurried tonight. We have much to process.

alexmom

I wish you luck. My son was 25.5 wks (1lb 4 oz) and had ROP in both eyes. He underwent the laser surgery and did amazingly well. Avastin wasn't available for us, but thankfully, I'm told he could be the poster child for Laser correction. One small note, if you do have the surgery, they tell you about "drainage from the eyes", they're not joking. I expected a moderate amt of drainage, but he kinda looked like a prize fighter. It mostly cleared over the first 24 hrs and he really didn't seem at all bothered by the whole experience. I just wished someone told me what to expect re- the drainage/swelling.

AnneV

My grandson won't have his eyes checked for about three weeks or so. I notice that some babies have the laser surgery early on, but this hospital doesn't start looking at the eyes until around 32 weeks. The pediatrician has told the opthamologist that my daughter is interested in Avastin. She would at least like to get his take on the use of Avastin before our little one is diagnosed.

gin8

My son had laser surgery in both eyes when he was 32weeks. We were not told about avastin . I reviewed and heard good feedback from avastin after his surgery. one thing is it would not destroy the peripheral view of the child . Also, laser surgery needs to be monitored closely since some patients gets retinal detachment during teenage years. hope this info helps.

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