Ricky is a 23 month old achon. Again this morning he woke up with a nasty nose bleed. Not to be overly gross, but I was able to pull out a rather large clot...
If the ear bleeds, it usually means that their is a build up of fluid either behind the eardrum, or if there are tubes in place then they are plugged/blocked....
District 2 Spring Regional information and registration form has been posted on the district website. The regional will be in Cherry Hill NJ on March 28-30. It...
Hello all. My name is Stephen, father of 7year old little person, Kyle. Kyle is our fourth child and the only one of small stature. I found the group and...
Stephen, Welcome to the club! What type of dwarfism does Kyle have? If we know this, we can give you better answers to your questions. How effective growth...
Hi Maria and Neal, Thanks for the welcome. I tried to email you directly but I don't think it went through. Please feel free to email me. It would be fun to...
Hi Chris, My name is Laura and I live in NJ. I have a 5 1/2 year old average height daugher and a younger daughter who will be turning 2 on May 9th. Chelsea...
Hello all, Our son Henry is 4 and has a very rare form of dwarfism (FFUS) that there are no specialist in (most dwarfism doctors have never even heard of it)....
Hi Traci- I recommend Dr. Charles Scott, Geneticist, at AI duPont in Wilmington, DE. 302-651-5916. Good luck! Lori ... there are ... it). Henry ... issues he...
Traci, One choice for Henry might be Vernon Tolo at L.A. Children's Hospital. Dr. Tolo is an orthopedic dwarfism specialist and that seems to be more of ...
Dear Chris, Greetings and welcome! Our son Patrick Sapp has also been diagnosed most likely with hypo (not to be confused with Patrick Jones who also has...
Hi Terri, It was neat to hear from you. Cade was diagnosed with hypo when he was 10 months old, he had a DNA test. It was suspected when he had his 4 month...
Hi Chris, I'm Beth, Leah's mom, in Denver. We see Dr. Bellus too. He's wonderful. If you happen to be in town on the 8th (I think that's the date) our Front...
Vita, I tried to contact Dr. Tolo several times last year but he never got back to me. I am really looking for more of a genetics person than an ortho as...
Hi Beth, Cade's appointment is March 10th. Is the microbrewery tour in Feb or March? We just got our newsletter from the Frontrange chapter and I didn't see it...
Traci, I keep forgetting to ask you something else about Henry. I remember you saying that Pauli (or somebody) thought Henry had Kyphomelic Dysplasia, in one...
Traci, I was just reading at the OMIM database about Femoral Hyppplasia- Unusual Facies Syndrome (FHUFS). One of the references is a paper by Dr. Charles...
Vita, Yep, that is the diagnosis we now think Henry has. It has several different abreviations. When I saw Dr. Pauli we were going on Dr. Langers opinion ...
I was traveling through Illinois yesterday with some friends on my way to Chicago and stopped at the Cracker Barrel on I-55 in Springfield Illinois. Behind...
Hi all, I did make an appointment with Dr. Scott today and we will be at DuPont on March 5th. Is anyone else going to be around there that day? I am afraid...
Hi, My name is Erica, I'm the mother of four boys. My youngest son, Alex has achondroplasia. I joined LPA Region 1 last year. I attended the Regional gathering...
I tried to send this to your personal email, but it didn't go through, so I just copied it below: Hi Tanya! Thanks for your message! We haven't been to any...
Hi Erica. My name is Amy, I have three boys and my youngest one is achon. He turned two this past Sept. The other two are 9 and 5. Four boys! I bet you have a...
Hello everyone. I have two sons; a 5 year old (average height) named Tucker and a 22 month old named Audlen (ahcond.). I joined LPA about a month after Aulden...
Hi......... especially to all the new members. Our house in on the market and we have brought a block and signed-up to build a house, changing certain things...
Hi Robyn Watson, I watched your follow-up on MTV on sat. you looked as cute as ever. I met you at the National Lpa conf. in utah in june I have a cute picture...
Hi Traci My name is Sue. I have a 10 month old with campomelic dysplasia. Before they diagnosed the CD they thought she had femoral hypoplasia/unusual...
Erica, Welcome to the club! Living on the Cape and being in District 1, you probably already know about the LPA convention being held in Boston this year....
Erica, I forgot to introduce myself, sorry! I'm Vita, the mom of adult Stefan. Stefan is 27 years old and is diastrophic (DD), one of the _other_ 200+ types...
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