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K Wehrle
March 15th, 2004, 11:37 PM
I think this was being addressed somewhere else, but I can't find it now...
My son, Peter, has Hunter Syndrome. He is going to be 12 in July - I dont' know how that happened so fast! Anyway, what he hates the most about having this syndrome is that he is so short! He is around 42" tall. He and I are wondering (he's sitting here helping me with this post...) if other boys w/Hunters are also this short? It seems to me I have seen many kids with hunters who are taller - maybe close to 5'?
Also, does anyone know if the kids in the ERT have grown taller?
Peter says thank you to anyone who responds! :kiss:

Kristin and Peter :angel:

March 16th, 2004, 12:37 AM
Kristin and Peter,
My son is almost 5 and has Hunters as well. Our Geneticist says Seth will grow and then will reach a point and then stop, I dont know if thats gonna be sooner or later. I have also heard that dwarfism is a trait of Hunters. My son is, as I said before, 5, but he is 46in tall. I know that he is VERY tall for his age (I think its 75% for hieght) but from what Ive been told we will have to just expect that he will stop growing UP and only growing OUT. I think it depends on where the MPS is building up at and how fast its progressing

SOMEONE CORRECT ME IF IM WRONG :roll:

Misty :D

Deidra Hicks
March 16th, 2004, 03:04 AM
:) Hi Kristin and Peter,
My name is Deidra and I have a 10.5 year old with hunter's and we have never been able to get an accurate hieght on my son(B.J.). Last month they said he was about 4'2. But I'm not to sure. He is the hieght of an average 5 year old. To me, that is very short. He has always stood on his toes. No one believes his age when I tell them.



Peter please don't let your hieght prevent you from achieving your goals! :angel:


Deidra

Laura Brodie
March 16th, 2004, 02:02 PM
Hi Peter,
Will is 4yrs and a good height for his age but we also have been told he will stop growing between 4 and 5ft.
I myself am only just 5ft at age 41 when I was younger it bothered me too but I know its made me a stronger person when I had to make myself felt in other ways :lol: My sister was at a christning the otherday and she said everyone was towering over her so she sat down and so did they! Love Laura

Sharon Cochenour
March 16th, 2004, 07:09 PM
My son Andrew has Hunters and has always been short for his age. He went through a growth spurt last year and actually grew 5 inches. He is 46 inches tall, and the same height as my 4 yr. old. (who is tall for his age). He is 6 yrs. old.
People ask me all the time if they are twins. I believe that almost every child with Hunters that I have seen are below average height for there age, it seems to be a Hunter trait.
Sharon

Anne Cairns
March 16th, 2004, 08:10 PM
Hello Kristin and Peter
My understanding is that the average hight for hunters children is 4 foot 7 inches to 5 feet tall.
Sebastien will be 4 years old this July and he is already 3 foot 7 inches tall .
I am still hoping for 6 foot 4 inches :lol:
Anne

ChrisMPS2
March 17th, 2004, 09:20 AM
William has been 4 feet tall for the last few years. He is 14 1/2. I am 5 feet and Lou is 6 foot 1.

My Dad was 5 feet. Everywhere he went he had lady friends. When I started taking the bus to work, there were all of these ladies on the bus that knew I must be his daughter from my height and bus stop. They couldn't stop talking about how nice he was and how much they missed him since he retired. He thought his height and sense of humor made people feel comfortable around him. I don't think his height held him back in too many things except being an army cook in WWII. His arms were too short and he kept getting burnt reaching over the stoves!

Chris

K Wehrle
March 17th, 2004, 06:45 PM
Thank you all for your responses! Peter liked the comment from Chris about her dad & all the ladies around him - Peter does like the ladies!!
It's really hard for Peter to be so small amongst all his tall "regular" friends! He's headed off to middle school next fall, & this is becoming a bigger concern for him. He's a trooper, though, and has lots of great "typical" friends...

Thanks again,

Peter & Kristin

cole74
March 21st, 2004, 11:46 PM
I presume Peter has 'mild' Hunters. How is he going? I have a 3 yr old son and 4 yr old nephew with Hunter Syndrome (mild). I too am of the understanding that Hunter boys are smaller in stature. My uncle had it and apparently he was short but not abnormally so. Interestingly both my nephew and son are very tall for their age. My son is in top 2% for his height/age! Who knows how long that will last! I'd love to hear from or about Peter, if he wants to share some of his story!

Thanks Nicole

mpssoc
March 22nd, 2004, 06:48 PM
Adam is 4' 11'' or 11 1/2" depending on who measures him. He stopped growing about the age of 13. He would give anything to have gotten one more inch to be 5 feet. Most of the adult's that I know of with mild Hunter syndrome are on the short side. There are some that are average height though.

Joan Cohen

K Wehrle
March 23rd, 2004, 10:27 AM
Hmmm...I've wondered if perhaps Peter has a form of dwarfism to go along with his Hunters. What he wouldn't give to be 4'11"!!!!! Being 3'6" is very tough for a kid going into 6th grade. Though he is behind somewhat in his academics, he still attends school with typical peers & spends the majority of his day in w/regular ed kids. Next year there'll be so many new faces w/3+ elementary schools feeding into this middle school & he's concerned about all the staring that is sure to be focused on him (which he HATES!!!!) :whatthe?: .
We keep pushing the "you are awesome just the way you are" thoughts, but ... remember what it's like heading off to middle school??? I know all his friends from elementary will be there to help him & fend off any bullies!

Thanks!

Kristin

momtoty
April 13th, 2004, 07:59 PM
I am sorry it took so long for me to reply to this post, but I may have some insight for Peter into middle school and girls anyways?
My 16 year old is very large for his age. He always has been. In middle school he was 5'9" and taller, and he is built like a man- large shoulders shaving at 13!!! Anyways, he is very cute too and I thought I would be beating the girls off with a stick! NOPE! (little mommy yay on that one, I wasn't ready for the girls!) I asked him one time about the girls and who liked whom, you know middle school type stuff and he said: "I have a lot of friends who are girls but the girls don't seem to like me, like me you know" and I asked him if he had any ideas why, he said "yes, I'm not small enough! The girls are crazy over the small guys" I was very surprised, but then I remembered back (as well as I could, it was soooo long ago) to my jr high days(it was not middle school then) and all the popular boys durring those two years were very short and small and funny. That seemed to be the "popular guy" combination short, small, comedians!
So Peter, the moral of this story is; you already have the upper hand in the height department, for middle school. If you are not already a good joke teller, brush up over the summer. Jokes are always a great icebreaker with new kids, and a great way to make new friends.
You know Kristin, I don't think the kids in middle school are quite as evil as they used to be when we were kids, the boys aren't anyways. Bryson also had some acne problems in middle school- it wasnt terrible but enough that I worried about him being teased. I asked him all the time if he was teased and he said "never- the guys don't tease you about those types of things, mom" So that was very reassuring to me that there are still many kind kids out there. There was a boy with tourettes syndrome and some pretty severe delay issues. Once in a while the jerky kids would try to mess with him- but Bryson and his football buddies would have Chase come sit with them at lunch and turn the tables on the bullies.
Good luck Peter, I think you'll do great in middle school!

Tressia
April 14th, 2004, 08:30 AM
My son, Cameron, Hunter Syndrome, is about 4' 4" and will be 12 this weekend. He started middle school this year and I was terrified because of his height, also because school has been a nightmare for us.

Guess what? He is the shortest person in all the 6th grade but he gets along well with the kids at school. I prayed that God would send him just one good friend to help him this year and boy did he ever. He has a girl friend that is taller than him and she watches out for him like a hawk. He even got detention one morning for passing notes in class. The note was from another girl who liked him. A copy of the note was sent home. I'll keep that note forever it was wonderful to see that he was fitting in. The best thing about my son is his smile, he always has one and he can melt a room with it. Good luck in middle school and remember GOD is with us.

Tressia

momtoty
April 14th, 2004, 09:06 AM
Tressia,
I got goosebumps reading your post :angel: Thanks for sharing that story with us!
Love,
Kim

Vibe
April 14th, 2004, 09:26 AM
My name is Vibeke, and I know how you feeling...
I was also short when I was 12-13 years old, I am not tall now either...
I dont know to use inches and feet like that, we use centimetres in norway. So I am 140 cm.
I dont have som good advice but if someone stares and say bad things at you, just hold your head high. I know how it is when someone laughing and stares, I hate it. Someone is still doing it now, adults.... Kids are just curious, but adult and grown up they should know better. Its hurting to see it. Some of the adults and grown up is laughing at me too. :mad:

:hug: from Vibeke.

Priscilla Raftery
April 14th, 2004, 11:49 AM
Vibeke, you most certainly are beautiful :angel: ! Priscilla

Laura Brodie
April 14th, 2004, 01:27 PM
Vibeke-hugs hugs and more hugs comming your way from England :cheers: Love Laura

Vibe
April 14th, 2004, 01:37 PM
Thanks Priscilla and Laura I give you hugs bavk to you :). Good to have this forum, its good to have someone to tell andsee that someone else is just like me :) Thanks for this forum. I love it.!!

From your norwegian friend!

K Wehrle
April 19th, 2004, 08:08 PM
Thank you Kim for your nice comments!! Now if I could get Peter to be a bit less shy - maybe he'd tell a joke or two! I do hear a lot of comments from his friends - boys and girls - about how funny he is. He's awful cute, too. And yes, I think the kids in middle school are much nicer now. I feel pretty confident that he'll be fine - it's just that he wishes he were taller - & you know how heartbreaking that can be!

Kristin

Sharon Cochenour
April 20th, 2004, 09:53 AM
Vibe and Peter,
Hugs to both of you. We don't care how under tall you are. I know from being the tallest girl in my class when I was younger, when I go back to my class reunions, the kids that make funny of you are usually fat and bald. :D
Sharon