DownSyn Forum

Momto4

Hi Everyone! I'm glad to stumble upon this forum.

My name is Jennifer and I'm a mom to 4 girls who are 14 (9th grade), 12 with DS (6th grade), 10 (5th grade) and 8 (3rd grade).

My 12yr old got her first period this past July. I have been teaching her how to use pads. She has more or less got it by now, but is oblivious about when to change. Therefore, her period has penerated into her pants more than once. Those of you who have gone through this, how do you teach them to take care of their hygiene matters? She is mentally about 7-8 years old.

My 12 yr old DS daughter has gained a lot of weight over this year. She is only 4'7'' and hitting close to 100lbs. I think it is a lot considering that her typical 14yr old sister is 5'3'' and 95lbs, I'm 5'4'' and 110lbs and my husband is 5'7'' and around 120lbs. All of us are of Asian descent. One thing on top of my head is probably because we eat dinner at 9pm and my 12yr old daughter sleeps right after dinner. Except my 12yr old daughter, the rest of us are night owls (me, my husband and our eldest DD sleep after midnight) so a 9pm dinner is actually ideal for us. I am wondering:
-Does your kid with DS gain weight more easily than the rest of the family?
-Does your kid with DS sleep more than peers of the same age?

It's getting harder and harder to find clothes that fit decently on my 12 yr old daughter. Last year, she mostly wore gymboree in size 10plus. Now, the 12plus is almost too small width-wise but still too long. I'm a bit of a clothing addict and love to dress my girls sweet and trendy. My 14, 10 and 8yr old DDs usually get their clothes from Justice, gap kids and abercromibe kids. Except for the odd piece here and there, none of these brands fit my 12yr old! Would love to know where you find clothes that flatter a plus size DS figure.

Sorry for the long introduction and numerous questions. I'm so excited to be here!

Thank you,
Jennifer

lespring · Posted: October 12 2010, 11:59 AM Post subject:

Although your daughter's weight puts her in the 75% on the Down syndrome growth charts, she's also tall for a girl her age with DS, and her height is proportional! According to the charts, she seems well proportioned for a girl with DS. But that's according to the charts, since you don't have any pictures posted I'm just going by the charts.

My daughter Angela is 55 inches and 93 lbs at 14,(this puts her right at the 50% on the DS charts) and looking at her body I would NOT want her any thinner than she is now! The pictures in my signature were just taken a week or so ago.

Angela requires more sleep that the rest of the family, and yet she has a hard time sleeping. With medication she is able to sleep 10-12 hours at night, but still gets fatigued during the day. This is partly due to having low muscle tone. It takes more energy to move the body around when you have low muscle tone. Also, when there are learning deficits it takes more energy to concentrate and learn new tasks.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Edensmama · Posted: October 12 2010, 12:01 PM Post subject:

Hello and WELCOME Jennifer! I'm so glad you found Downsyn - it is the best!! I can't really help you on most of your questions since my daughter is only 2 but I can tell you that many adolescents and adults with DS struggle with weight gain. Sometimes it is related to thyroid issues so if you haven't had her levels checked recently I would recommend that. My only other thought would be to make sure to get her activity level up - maybe she could join a sports team or swimming group?

As for clothes, I know our kids tend to be kind of on the "short" side so you may need to get her some adult sizes and alter them...but that can get pricey! Hopefully some of the moms and dads of teenagers can give you some better suggestions there.

Good luck!

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

naomid · Posted: October 12 2010, 3:10 PM Post subject:

Welcome! I'm not quite where you are as I have a 7 1/2 year old and he's a boy!

However the weight may be due to the fact the people with Down Syndrome use less calories than their peers even when eating the same amount and doing the same exercise. Here's an article which explains http://www.ds-health.com/metab.htm so it might be that you need to reduce portion size or increase physical activity. It's probably also due to puberty starting.

As to sleep, yes my child with DS needs more sleep, he gets tired much more easily than his brother and is usually asking to go to bed by 7pm! (he's up sometime between 6am and 7am) About 9 or 10 hours sleep is about average for your daughters age I think.

Clothes are getting to be an issue with us, especially trousers which are always too long. We're just about to take all his school trousers to be altered as we can't find any that fit round the waist and have the right leg length. Callum is about 50th percentile for weight and 75th percentile for height on the DS chart, but he still has a round tummy so unless it's an elasticated waist then nothing fits!

_________________
Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
Read all about us
Our Photo's
Our Video's
Our You Tube Channel

South Manchester Down Syndrome Group

kittycat3376 · Posted: October 12 2010, 3:19 PM Post subject:

I would focus on finding clothes that fit her around and hem them or have them hemmed. A simple hem isn't all that expensive to have done if you don't sew yourself or have a family member who does...and if you have a lot of clothes done at once you can probably get a small discount.

Just be glad she's not super tall and skinny, most of my family is...and it is a LOT easier to shorten clothes than to lengthen them.

Do you have a Fashion Bug?...my daughter and I love to shop there. They have really cute, fasionable clothes for all sizes.

_________________
http://www.carepages.com/carepages/DavidLucas

burnsun · Posted: October 12 2010, 3:54 PM Post subject:

Ok...... our school has the girls change their pads every time they go to the bathroom no matter how soiled or not..... to get them in the habit and as they get better (if they can..... they move to talking about when to change them due to soiled amount and odor) and has them go every two hours as soon as that is noticed..... I asked the other month ust so I know what happens.... I was getting scared and freaked out a little early I know..... but I need something to panic about that day......

and I looked on the same charts as Leah and she seems to fit right in...... I would talk with your doctor if you are concerned and start some goals and thisngs to monitor and watch..... but if she is like most girls there is a weight gain for almost all typical girls with the onset of menses

and yes it necessarry to need extra sleep...... Devon does even need more compared to my other children with DS...... he needs tons!!!!!!!!!!!! Almost 12 hours most days to be nice and well behaved!

Welcome!!!!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Tigger · Posted: October 12 2010, 6:10 PM Post subject:

Welcome to the forum!!! We don't have to face the issue yet for my daughter with DS as she is only turning 5 shortly but I have 21 year old and 14 year old girls and both of them have put on extra weight at around the time their periods started. My eldest put on more weight than the younger one and clothing was an issue for a couple of years until she slimmed down a bit. She will always be a bit chunkier than my other kids as her biological father is built that way.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

AliMama · Posted: October 12 2010, 9:32 PM Post subject:

Sorry I don't have any great advice, but I just wanted to say welcome. It's great to have you here. Stumbling upon Downsyn was one of the best things I ever did! Very Happy

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

MarissaMom · Posted: October 13 2010, 11:13 AM Post subject:

Hi Jennifer and welcome! Boy can I relate to your post. My daughter is 19 years old and starting at about the age of your daughter I really had to teach myself how to sew a pants hem! Marissa is really into clothes too. It broke my heart when she started to outgrow childs size clothes. We have had good luck with the size 14/16 plus sizes at JC Pennys and Sears. We shop online as they offer a larger selection and Sears has super cute jeans and capris. We do Gap and old navy a lot too. Justice,American Eagle,Express AB&F just do not fit her well. We do shop at Kohls, Ross, Macy and have found that Jr. Size 7 fit well. Also petite sizes are a good fit. But I always have to hem!

As far as period help-Marissa received great assistance from the school nurse at her Middle School. I bought a few extra pairs of black pants/dark jeans for her to wear during that time of the month in case of leakage. Pads were a big issue! Marissa could not use the kind with "wings"- they were too hard to manipulate and sticky. Also she does not like thin pads. She like the Always Maxi brand. Marissa did not like blood on the pad and so infrequent changing was not a problem for us- in fact in the beginning I think she changed too often. Maybe you could get your daughter a wrist watch and set it to beep every 2 hours and that means it is time to change her pad. She should also wrap her pad in toilet paper to dispose of it or buy those little brown bags to throw them away in. To encourage Marissa to carry her pads with her we bought cute little purses to put the pads in. Marissa suffers from horrible cramps the first day of her period and we use a heating pad, Midol or Motrin to provide relief. It sounds like your daughter is doing really well-just needs a bit more extra help but she will get it!

Puberty is a time of weight gain for girls and as others have posted it sounds like your daughter is doing well. I have found with Marissa that she needs to exercise everyday to maintain a healthy weight. She enjoys walking, dancing, swimming and bike riding. Maybe your family could eat a bit earlier in the evening so your daughter has more time to digest her meal before bed.

Another poster suggested getting Thyroid function checked and I agree- In fact Marissa was around 10 years old when she started on Synthroid for Hypothyroidism. It is a simple blood test.

I am glad you posted and look forward to hearing more about you and your family.

_________________
Mary-Mom to Marissa 21 years old and Greg 16 years old and married 22 years to Mike

sandsmom · Posted: October 18 2011, 8:51 PM Post subject:

As for my daughter she is 11...Ive noticed for whatever reason Gap fits in both waist and length....this year was a little different cause she's filled out at the waist....so this is what I figured. I bought Sydnie an 8 plus skinny jean...still drawed up due to the plus but 10s were just too big and 8s too small but thank you Lord for skinny jeans at least they dont go over her shoes!

_________________
Angie
Mom to Sydnie (5/26/00) and Saylor (4/30/04)

"May God Bless You As He Has Us"

An extra little chromosome,
that’s all it is, you see.
Where all of you were born with two,
I was blessed with three

"My Children are God's gift to me.
How I raise them, is my gift to God."

Excalibur · Posted: October 19 2011, 7:10 PM Post subject:

For cheap jeans and trousers for my 17 yr old boy - who is fit, 5' tall and well-built, not overweight but chunky, I sew the hems myself. For fancy suits and so on I go to Slaters Menswear in Glasgow, which is apparently the largest men's outfitters in the world, and they do all alterations for free, including reducing jacket sleeves and lengths, trouser hems, you name it, they do it; unbelievable value. They have 23 stores across the UK.
http://en.wikipedia.org/wiki/Slater_menswear

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

Catty · Posted: October 26 2011, 10:00 AM Post subject:

JC Penney in the US..has plus size childrens clothing which has been a god sent for us..we do a lot of hemming as well with her trousers. My daughter lives in leggings, and her jeans are from JC but hemmed. YOu can also order online. They have those special ocassion things that hard to find for her size and body shape like xmas dresses.