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New Mommy. Daugther has Proteus Syndrome.


Forum: Children with Special Needs

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  • 1 Post By cablanken
  • 1 Post By mamma_anna

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  #1  
April 4th, 2011, 06:22 PM
sweetmelissa's Avatar Live.Laugh.Love.
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edit to protect my child
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Last edited by sweetmelissa; January 22nd, 2012 at 04:38 PM.
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  #2  
April 4th, 2011, 07:34 PM
mamma_anna's Avatar Mega Super Mommy
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Welcome to the board. Glad you posted here. It's definitely the right place for you. Our kiddo's have a wide variety of special needs but we all have things in common.

I'm Anna. My dh Rick and I have 4 daughters. Our youngest is Ellie. She has cerebral palsy, chronic lung disease and ptsd.

I'm looking forward to getting to know you and your little one!
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  #3  
April 5th, 2011, 02:33 AM
mom2myJo's's Avatar Mega Super Mommy
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Welcome !

I am Carin and I have two kids , Joseph (2.5) who has autism and Jocelyn (4.5 months) who has moderate hypotonia for which we will never know why.
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  #4  
April 5th, 2011, 07:42 AM
greenchild's Avatar Platinum Supermommy
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Hi Melissa!
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  #5  
April 6th, 2011, 11:45 AM
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Hi and welcome to the SN board! My name is Hope. My SN DD is currently inpatient (which is why I'm just now responding). She has Mitochondrial disease.

I hope you stay and join us here. We are a diverse group and a great support.
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  #6  
April 6th, 2011, 02:28 PM
C&K'sMama's Avatar Platinum Supermommy
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Hi Melissa! I remember you! (We used to post on the Dec 07 PR and were friends with Cynthia and Gabe ) I remember what you went through when she was born trying to find an answer.

I'm Alycia, mama to Carrie and Katie. Carrie has slow brain waves but we still don't know why and likely never will. She's just learning to walk. Says only "mama" and has a couple signs.

In my experience the dev'd delayed board is mostly autistism but we lurk there a lot too. I hope you stick around here (I don't mean to imply it's either/or lol)

Glad you found us!!
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Last edited by C&K'sMama; April 6th, 2011 at 02:44 PM.
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  #7  
April 6th, 2011, 03:39 PM
sweetmelissa's Avatar Live.Laugh.Love.
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Thanks ladies. Its nice to see some familiar faces & to meet new people.

She just had her first First Steps appt and they put her at a 18 month old level for fine & gross moter skill. And they put her at a 9 - 12 month old level for communication. Our 5 month old daughter is saying da & ma now.. She has the same vocabulary as Rachel. It was a happy yet sad moment.
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  #8  
April 8th, 2011, 05:42 PM
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welcome I'm Kaytee, Avery is my sn and is legally blind.
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  #9  
April 8th, 2011, 08:26 PM
C&K'sMama's Avatar Platinum Supermommy
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Melissa - I have those moments with Katie. Carrie has less words than Kate does and Kate walks well where Carrie doesn't. It's sad days for me when Kate does things that Carrie can't but it really motivates Carrie to do new things. I worry much more than she does and it gets her doing things sooner than she normally would.
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  #10  
April 12th, 2011, 04:10 PM
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Hi Melissa,

When I read you post I Have to say I felt an instant bond. My daughter (26 months old) has Hemihyperplasia Multiple Lipomatosis. It is a very syndrome that is related to proteus in the sence that it is an over growth disorder and is treated the same way as prtoeus. the syndrome was only discovered maybe 12 years ago. Dr. Biesecker @ the NIH is the Dr. Currently studying proteus and he discovered this syndrome. He told us many of the patients are first diagnosed with proteus however they do not usually have bone envolvement. Instead they have lipomas or fatty tissue that grows randomly everywhere. Proteus usually doesn't show itself til a child is a bit older. With my daughter we saw some of the symptoms at birth and she is developing more and more symptoms as she gets older.

At birth she suffered ......

2 strokes causing mild cerebral palsy
had bilateral hip displasia
deformed feet - they look like monkeys feet
deformed legs - on is bigger than the other and the knees bend weird

At about 3 months of age we noticed....

GI issues Belly got really distended alergic to milk eggs and soy
the lipomas (fatty tumers) started to grow.

The first lipoma we noticed was on her belly near her bellly button. Looks like an egg sticking out from her belly. the next was on her back. Since then she has had one grow inside her spinal column that had to be removed surgically. Now her back is completely covered and her torso is very lumpy.
She doesn't eat well not sure if its the syndrome or not. but her little arms and chest are very thin.

Developmentally her speach is very delayed she is testing at 9-12 month range, cognition is at age level her fine motor is off on her right side due to the CP and she drags her feet. She didn't start walking til she was 22 months old. We asked for a walker to help her and after 2 months she was going on her own. She still uses it when she wants to run or get tired.

When I read the part about you daughters fatty tumer I imediately thought about our daughter. I too am always looking for someone to connect with. Being that it is such a rare disorder there arent many people out there to talk to. If you are interested I would love to give you my e-mail or phone # to keep in touch.

Take care
Erin
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  #11  
April 12th, 2011, 04:33 PM
sweetmelissa's Avatar Live.Laugh.Love.
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Erin I have to say I started to tear up when I read your reply. I instantly thought finally someone going through something so similar its not even funny! Its really hard to find anyone who's in the same ball park as Rachel. I'm a member of several Special Needs websites but no one has anything close to Rachel so I'm always the outsider.

I would love to do e-mail and add you on facebook if you don't mind. My husband is a worry wart and doesn't like it when I give out my number to strangers. But I wouldn't mind talking to you more at all.
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  #12  
March 22nd, 2012, 09:24 AM
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Hi Erin and Melissa,

I just stumbled on this message board searching for HHML. I hope you still read this site, it has been awhile since you posted.

I too have a daughter with multiple lipomas throughout her little body. She was diagnosed with Cloves Syndrome through Boston but back in the day (2 years ago) Dr. Biesecker thought she might have HHML.

Emaleigh's right side is bigger than her left, she has subcutaneous lipomas all over, a significant leg length descrepancy, a larger left kidney, bilateral Wilms tumor, Large feet (they looked like hands - the toes were on the side), large right leg, and very thin arms, face, and neck.
I would love to talk to you.

Thanks,
Adrienne
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  #13  
March 23rd, 2012, 10:42 AM
mamma_anna's Avatar Mega Super Mommy
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Hi Adrienne! I just wanted to say welcome to JM! I hope you'll stick around. We'd love to get to know you and your little one.
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  #14  
April 12th, 2012, 08:03 PM
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Hi Anna!

Thank you, I'm not a big forum person yet. I'll need to turn on emails, so I don't forget! Look forward to keeping in touch.
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  #15  
April 12th, 2012, 08:42 PM
mamma_anna's Avatar Mega Super Mommy
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Good to see you again! It took me a while to get used to the forum thing too. Now I'm kind of addicted.
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  #16  
May 3rd, 2012, 04:59 PM
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Adrienne,
Sorry it to me so long to reply. I am not on jm that often. Sorry to hear about your daughter. as Makena gets older she is progressing more and more into a proteus patient. we are working with Dr. Biesecker and his team at the NIH to have her tested for the Proteus Gene. And we may be heading to the NIH some time this year to be evaluated.
Please feel free to email me @ scubadiver_77@hotmail.com
take care
Erin
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