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Forum: Children with Special Needs

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  #1  
May 6th, 2011, 07:20 AM
sweetmelissa's Avatar Live.Laugh.Love.
Join Date: Jan 2007
Location: Some Beach in Florida
Posts: 9,613
When Rachel was a month old we took her to a genetics doctor who said she had Klippel-Trenaunay Syndrome or KTS. The doctor said come back in two years. Well when Rachel was 5 months we moved to Florida and her ped wanted her to see a genetics doctor at All Childrens Hospital. They then said that they believe she has Proteus Syndrome. They did say through that they can't give us a 100% answer because there is no test they can do to test for it. We just have to see what her symptons are and try to fit them to something. This was in January 2010.

Well my mom refuses to believe it and swears that she has KTS. She won't even say Proteus Syndrome. She keeps looking up KTS and sending me stuff on it swearing that its just like Rachel. What my mom is doing is finding stories of other people who have one or two things like Rachel and then swearing that she can't have Proteus because she has this in common with people who have KTS... She refuses to think its Proteus Syndrome.

She's really starting to irritate me. I keep telling her that she didn't go through medical school and to let the doctors do their job but she just won't budge. She keeps saying she hates her genetics doctors and that they don't know what they are doing. She keeps wanting to go with us to Rachel's genetics appointments and I keep saying no. I like these doctors and I know my mom will try to get in the doctors face and tell her that she's wrong..

I've asked my mom to stop. I've stopped answering her when she says something and I just now ignore her but she's still at it. This has been going on since the day we told her they think she has Proteus Syndrome.

Has anyone else been through this? How do I finally get my mom to stop?
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  #2  
May 6th, 2011, 08:29 AM
greenchild's Avatar Platinum Supermommy
Join Date: Jul 2006
Location: MN
Posts: 15,839
you may not like my answer but coming from the opposite experience where most of Kaiden's dr's have been idiots (and now we need to change pedi's again! ) . . . I would do my own research between KTS and Proteus and see what *I* think based on Rachel's symptoms. If you do the research and agree with your Mom, that's one thing . . . but if you do the research and agree with the doctors, then you may need to bring her to an appt so the dr can lay it out for your mom if she won't listen to you. And there's always the possibility she fits some of both syndromes - doesn't mean she has both, just that kids are different and symptoms can show up differently.

In my experience, doctors don't always know best and Kaiden would not be where he is today if I had listened to them. I always urge others to do their own research.
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  #3  
May 6th, 2011, 08:46 AM
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Join Date: Mar 2011
Location: SE Maryland
Posts: 63
I had a simmilar situation with my mum, not exactly the same though.
We had all these tests and whatnot proving something was/is wrong, the doctors just didn't/don't know what it is. My mum decided it was all in my head and i was fabricating everything to get attenetion, she even had DH convinced of this for awhile when he was deployed to bahrain. I took her to appointments where the doctors would point out "this, this, and that are deffinantly not quite right, we just don't know why" she still insisted it was all me. She went so far as to tell the feeding team DD saw that i thought her having a feeding tube was fun (UGH).

When DH got back from bahrain and realized she was full of s*** we decided to cut her out of our lives for a while. She was out of our lives for almost 6 months. Then she started having her own medical problems and realized it's not so fun afterall. She will actually listen and take things into consideration now, although when new things pop up it's still hard for her to accept it.

(I hope you don't have to take steps that drastic, but i just wanted to share that with you, you are deffinantly not alone with family being difficult)

I also agree with greenchild. Do some research youself, maybe you can find something that lists typical symptoms of each one. Maybe try circleing/highlighting all the things that match her in each one and show your mum, especailly if she has more circles/highlights in the proteus list the the KTS list.

I hope you can get your mum to come around.
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  #4  
May 6th, 2011, 03:37 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
Been there... actually still there in some ways.

When Carrie was teeny, I'd get told (even by DH) that there was nothing wrong and it was all me being paranoid. When she was diagnosed delayed MIL and a few others went straight to autism and wouldn't let up. We still have a hard time with that battle, but pointing out all the "not" symptoms really helped me. There are several symptoms that Carrie exhibits that are common with autism, but there are some key ASD symptoms that Carrie absolutely does not have.

I sat them down and told them that while we don't *know* what she has, we've ruled out autism because of... (and listed the signs she does not show). Then just to stop them from correcting me I told them. We're keeping informed about anything that it COULD be. Since we have no definitive tests we want to know everything that we could potentially face. That argument really helped because now I have something to say each time I'm told not to worry about her future because "she'll be fine" even though the doctors say she won't be able to live on her own. I just go back to "we're preparing for the worst and hoping for the best, we want to be prepared since there is no testing that can give us real answers".

I think it helped mostly cause I wasn't telling them that they were wrong. I was even telling them that they could possibly be right but that I had to protect my daughter by covering all our bases. No one wants to argue with protecting your child.
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  #5  
May 9th, 2011, 05:39 AM
sweetmelissa's Avatar Live.Laugh.Love.
Join Date: Jan 2007
Location: Some Beach in Florida
Posts: 9,613
Thanks ladies. I have done some research and Rachel is missing a lot of the symptoms/signs of KTS. There's a list of 10 that people usually have at least 8 of and Rachel has 2. Proteus has a list of 10 and Rachel has 9.

I did find a doctor who's doing a study on Proteus & 25 other growth hormone syndromes and her genetics and neurosurgeon are sending him copies of her files for him to look at. He's doing a study to see how Proteus Syndrome & ten of the other syndromes affect kids from birth to age 25. So he said he'll review Rachel's file and see if she would be a good fit for the study. (If she is then he'll work with her doctors and just monitor her. It'll be one more doctor looking over test results, one more doctor to say "hey this doesn't look right - try this".).
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  #6  
May 14th, 2011, 09:57 PM
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Join Date: Nov 2010
Location: Arkansas
Posts: 117
It sounds like your mom is in a bit of denaial. Thank her for what she is doing, because she does only mean the best, then send her some of your own research. Maybe having her go to these doc appts will help her work through her denial. Hang in there though, it does get bbetter and they do back off.
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