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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.
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.
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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.
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.
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.
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 @ firstname.lastname@example.org