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Raines Family
March 1st, 2004, 08:41 PM
My daughter Caylin has MPS III, we were having trouble with the tubes in her ears :( then on the fourth pair her doc decided to put T- tubes in and we have't had a problem since. :) We love them. We also had her tonsils removed and that helped her breath so much better cuz nothing was blocking her airways.

Priscilla Raftery
March 1st, 2004, 09:23 PM
T-tubes worked well on Joey (MPS IIIB), too. Glad Caylin is doing better with her breathing! :) Priscilla

Sheila George
March 1st, 2004, 10:34 PM
Yes the t-tube worked good on Shelby, too, so good it would not come out, we finally had to have it removed because it was the only ear she was getting an infection in, but that is another story all together. Now she has a hole in her ear where it did not heal from having the tube removed. If I had it to do over I would not have had it removed, we would have just found a way to make her keep the ear plug in for water protection. :)

The Rea Family
March 2nd, 2004, 09:12 AM
I'm glad that Caylin is doing so well.

Jessica
March 2nd, 2004, 09:30 AM
Now she has a hole in her ear where it did not heal from having the tube removed.

Kaity's did the exact same thing Sheila! The hole actually allows for drainage, so if there is no tube at least it has a way of escaping. Holding all the fluid in is what makes the ear hurt.

Kaity's ears are a mess...always have been. It is her #1 problem with Hurler's. Just like some of you, we went through four sets of tubes before they put T-tubes in which finally seemed to stay.

Well...for a few years anyway. :wink:

Barbara Pryor
March 2nd, 2004, 10:08 AM
We just had to replace the t-tubes in my foster sons ears this past October. One of them fell in behind the ear drum. The doctor said that this was the first time he had ever seen this. He had them put in two years ago and they are fine. His infections are due to his supressed immune system from his kidney transplant. Other than that his ears have been fine. :)

Paulina Jump
March 2nd, 2004, 10:13 AM
We had Andrew's tonsils removed before we knew he had Sanfiliippo. He probally needs tubes, but he doctor doesn't want to put any in because of the risk.

Paulina

Laura Brodie
March 2nd, 2004, 05:55 PM
Will has had two sets of tubes so far -not T tubes- but they have really made a difference both times! However we had to wait 6 months for the last lot which made me very angry :? and we only got them done then because you can't be any longer than 6 months on a waiting list here-well according to '[The Patients Charter!]].Still it was worth it in the end. Love Laura

Sharon Cochenour
March 2nd, 2004, 09:52 PM
My son Andrew has had 3 set of ear tubes. He also had his adnoids out twice (due to regrowth) and tonsils once. That was before the MPS diagnosis. It made a huge difference in his breathing. The doctor decided to put in T-tubes this time under twilight sedation since he has Hunters, no IV and he was sedated but not asleep. It took only 5 mins. for surgery and we haven't had a problem since. :P

Sharon

ChrisMPS2
March 3rd, 2004, 12:09 AM
William had his little front teeth capped the same time he got his T-tubes. The T-tubes worked great, they stopped the endless ear infections and really cut down on the trips to the Doctor for antibiotics not to mention the way his noise level would go way up when his ears were full of fluid. The tubes lasted 18 months, then they kind of slid to the entrance of his ear slowly until one day I could grab them with tweezers.