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#24290 - 04/29/09 12:25 PM Has anyone gone to Dr. James Treat
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
I just took both kids (Alex for the icthyosis, and Lizzie for some warts) to see Dr. Treat at CHOP. I was very happy with him. He new what he was talking about and wasn't pushy about trying new creams, or using some sort of steroid or acid type cream on Alex (we have been against both until he is more concerned with how his skin looks, for now he is comfortable with just plain Aveno cream) I didn't feel like we were a science experiment because he has both xli and kallmans. He understood that Alex is a little nervous around Dr.'s right now due to some rough ENT appts. and didn't automatically want to freeze off the small wart on his nose.

Overall I was very happy and was wondering if anybody else has had any experience with him good or bad.
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#24292 - 04/29/09 06:21 PM Re: Has anyone gone to Dr. James Treat [Re: jrmiss86]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
I know the feeling about them being nervous. My son Jack is petrified at the moment because of a nightmare ENT visit - I'm petrified myself at the thought of the next one!

It's such a relief when you find a doctor that puts them at ease and treats them as a person and not talk about them. It makes it a lot easier on parents too!!!

Yvonne.

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#24295 - 04/29/09 07:32 PM Re: Has anyone gone to Dr. James Treat [Re: yr]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
I too know where you're coming from on this! Our derm is fantastic! He always talks directly to our daughter - and she's only 2 - but he makes sure that we get what his point is! I think it's great how he `includes' her at such a young age! His approach is excellent!

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#24303 - 04/30/09 09:51 PM Re: Has anyone gone to Dr. James Treat [Re: BritMum]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
yr when you say nightmare ENT visit, can you clarify?? TJ went in for a hearing screen and when they tried to do the test where they puff air into his ears, the dr. tore the skin at the outside of his ear canal... AND they only then decided to have his ears cleaned out before getting new tubes and having a thorough hearing test done. (since the skin and earwax have built up in his ears.)
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#24316 - 05/01/09 07:30 PM Re: Has anyone gone to Dr. James Treat [Re: Cindie]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
Hi Cindie,

Jack is now 9 and has had his ears cleaned out so many times that he knows what to expect- they have a procedure called micro T and suction under general anaesthetic. Basically the ENT man hoovers out the ears. Sometimes though the wax and skin form keratin - which you probably know anyway - is the stuff that hardens your nails and then they scrape the ear, taking a layer of skin off the drum.

Jack always wakes up in pain and with a headache and the time before last he had trauma to his ear drum and they bled. The second last time it took 3 nurses and myself and the anaesthetist to hold him down while they put him out so it was decided to give him a pre-med and put him first on the list. It was awful as he had no control over himself and could'nt even cry, just whimper because he was so sedated, but he did'nt remember anything so it was judged to be a success.

This time round they gave him the premed, but forgot to put him top of the list eventhough I asked. Again he had no control and wet himself. By the time it was the turn of the child before Jack, the premed had worn off and they had apparently given him enough to knock a horse out! So again it took 4 of us - I had to lie across him and the anaesthetist held his head and put him out. I was very distressed and Jack was very frightened. He woke up in a distressed state and was again in pain.

We get on really well with the ENT man and the anaesthetist, but it was a disaster. They said they will have to re-think the whole thing for next time, but it's too severe to do it in their senses. Otherwise I can't fault them. I think the surgeon is next to God and would put their lives in his hands if I had to.

Gary does'nt have this problem and comes out of it smiling! This is the least traumatic way of doing the procedure for them and I really cannot fault the hospital otherwise, even down to the nurses. They know he is frightened and everything is done while he is asleep, the problem is getting him to sleep!

Yvonne.

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#24317 - 05/01/09 07:34 PM Re: Has anyone gone to Dr. James Treat [Re: yr]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
Hi again Cindie,

I just spotted TJ's date of birth. It must be very difficult to do any of those tests to a baby so young. How can you keep a baby from wriggling and moving? Would'nt it be better to put him out for it? Ours only takes 15 mins and he's back in bed in less than 3/4 of an hour.

Yvonne.

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#24319 - 05/01/09 08:22 PM Re: Has anyone gone to Dr. James Treat [Re: yr]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Our ent did all the tests - hearing and checking the pressure and response of the drum (air blowing thingy) and told us that while they all remain in "normal" limits they believe cleaning under a GA is a drastic measure. He did tell us that if we notice any change or have any concerns he will review our daughter and re-evaluate. While we were at the appt though, I asked him to have a go at cleaning what he could get hold of out of her ears and he did. She's really compliant with stuff like that for a 2 yr old, but she got fed up as I was totally unprepared and hadn't taken anything with me to distract her with so all I had was the paper and plastic wrapper off the "knitting needle" that he was using!

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#24321 - 05/01/09 09:07 PM Re: Has anyone gone to Dr. James Treat [Re: BritMum]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
The old saying that doctor's differ.... is really true is'nt it? Our ENT guy says this is the way to go because what he does is too severe while they are children. A friend of ours whose son has ichthyosis goes to him too and he has the same procedure. Jack is almost deaf before he gets them done - he can only hear you if he can see your face, the t.v. is turned up full blast etc.
We tried using olive oil and audiclean is good, but eventually, he needs them done by Prof Fenton. I asked him about cleaning them out ourselves and said that it always ended up that they needed to be done by him so he said not to worry about trying to clean them, just let it to him.
A colleague of our g.p.'s tried it one day with the warm water and syringe thing on Gary and he nearly lost his life! He went ballistic. So now they won't even attempt to clean them and tell us to ring the Prof. It's funny though that Gary does'nt have as much trouble with his as Jack does.
Has anyone's children ever had a cyst in the ear? Gary had one once and it was on the drum, but a layer of skin grew over it and the g.p. could'nt see it. Eventually is started to weep black stuff and he went into the day ward to the Prof and he cleaned them and found the cyst. It was infected and full of puss and skin!
A few months later, I noticed that a bead was missing off a cushion. Searched high up and low down only to discover on Boxing Day that it was in the ear that had the infected cyst! The ENT on call was called in and said that he was so brave and his mum would get him something nice. I barked out that it was a good job santa had been cos he would'nt have got anything.... It's funny now but I was not impressed at the time!

Yvonne.

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#24462 - 05/21/09 04:44 AM Re: Has anyone gone to Dr. James Treat [Re: yr]
blinky Offline
Member

Registered: 10/24/07
Posts: 39
Loc: Pottstown, PA USA
I have seen Dr. Treat he is very nice and is great with the kids.
_________________________
mom to:
Wyatt 6-22-07 ??? ich
Dakota - 2
Gavin - 7
Ryleigh - 8
Erin - 17

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