Update and looking for DS specialists

[kokie]

Hi All -

We went to our Dr's appointment last Tuesday and they are still worried about him not gaining enough weight. There is a major discrepancy between our scale and their scale. According to our scale he gained 4 or so ounces last week and according to their scale he gained two ounces in the last two weeks. He is a pound and 1 ounce over his birth weight and is on the 5th % for DS weight and 10% for DS length. He is a happy and healthy little boy, so we are not concerned about his low weight gain. The Dr's want to see him get to the 10th % for DS growth. We will try to do that as best as possible, but if he doesn't do that we are not worried. We are going to add some soy formula to my mom's breastmilk and see if that helps boost him at all and to make the Dr's relax a bit.
Anyways, I am looking for DS specialists (Dr's, nurses, etc). I am going to research a ton and try to get a bunch more info to show them when we go this coming Monday that he is fine (even if he doesn't get to the 10th %). I showed them the research I had done last time, but it wasn't enough. I am going to do alot more. Does anyone know of any DS specialists (or where I could find them)? I know of Dr. Leshin and he didn't help us at all in his email back to us (we are going to ask him why he said what he said - Osiyyah should be gaining like a normal baby). I appreciate any and all answers!

Thanks everyone for the help, I appreciate it ,
Qadoshyah
sister to 10 siblings, including b/g twins, Osiyyah (DS) and Yophiyyah (10 wks old)

[meghans_mom]

The first year of life kids w/ DS are usually charted on the typical kids growth chart, not on the chart for kids w/ DS - because as far as I understand growth patterns should follow that of typical babies.
Once they hit the one year mark, then switch over to the DS chart. That is probably why Dr Leshin said what he did.

there are several states w/ DS clinics but I am not sure of where they are or what they are called. Try contacting the NDSS or NDSC (ndss.org ndsc.org) for a list.

good luck, I hope the addition of the soy formula helps Osiyyah gain more weight to make the doctors happy.

laurie

[donnita]

Kokie,
Both of my daughters gained very liitle weight as newborns and had to go to the doctor every week for weigh-ins. One thing I would suggest is to make sure the nurses use the same scales every time. If they are portable scales, have them put a sticker on one set so they know which to use. The nurses that weighed my daughters promised me that both scales were accurate and that it didn't matter which ones they used. So one day when they said that Cassie had actually LOST weight from the week before, I insisted that they use the other scales and sure enough, the scales were different and she had really gained weight.
Cassie's developmenetal therapist had a son that was very premature, only weighed 18 ounces, and was at Riley Children's Hospital for several months. She said the nurses there were very careful to always use the same scales each time.
Cassie had a hard time gaining because of her heart defect and had to go on high calorie formula. But I think that if she didn't have a heart defect that she would have gained weight like a typical baby should.
Your brother is lucky to have you for a big sister. He, and all people with Down syndrome, need all the advocates he can get.

Good Luck,
Donnita

[wrblack]

Dr. Leshin has a listing of Ds clinics in the US, www.ds-health.com/clinics.htm
I'm not sure how up to date nor comprehensive it is.
I believe you are in Calif. So, you might be interested in
Univ. of Calif. at San Francisco
400 Parnassus, ACC Bldg, Room A226
San Francisco, CA
Phone: [phone]
or
Developmental Disabilities Clinic
UCLA Hospital Neuropsychiatric Institute
740 Westwood Plaza
Los Angeles, CA
Phone: [phone]
Then again, maybe one of those clinics could give you some info on something closer to you.
BTW, both of my sons were preemies, each started out at about 2 1/2 lbs. I was always as much interested in them making a nice curve on whatever chart as I was in where that curve was or what chart it was on, Ds, preemie, regular.
HTH -- Bob

[Kristen]

That little bit of powdered formula can make a huge difference. We took Carter to a DS clinic twice. Honestly, they were not very hepful because he didn't have a health/growth problem. You're doing an awesome job! What a great sister you are!

[PaigesMom]

Wow Laurie, I have never heard that. I have heard exactly the opposite - that babies w/Ds should be charted on the DS growth charts until they are 3 because they do gain weight slower and if they are charting on the typical growth charts they could look like they are failing to thrive.

I know there are two sets of DS growth charts - one for height/weight/head circ. birth to age three and then one for ages 2-18.

I wonder if that is new? If so, I'd better update our info in our DS group packets, b/c we STRESS the pediatrician use the DS growth charts for babies.

If you have any more info, I'd appreciate it!!

Debbie

[Jodi]

I don't have any suggestions for DS specialist, but I just wanted you to know that Ryan was in the lower 5th percentile until he was about 3 for kids with DS.

He had 3 small holes in his heart that closed by his first birthday, and he had sleep apnea (went undiagnosed until he was 3) which also affected his growth.

But, as someone told me once, someone has to be in the 5th percentile in order to make the chart work! Now, although I did later find that Ryan had a medical issue that contributed to his slow weight gain, I do believe there is a chance for a healthy child with Ds to be one the small side.

[kokie]

meghans_mom said:

The first year of life kids w/ DS are usually charted on the typical kids growth chart, not on the chart for kids w/ DS - because as far as I understand growth patterns should follow that of typical babies.
Once they hit the one year mark, then switch over to the DS chart. That is probably why Dr Leshin said what he did.

there are several states w/ DS clinics but I am not sure of where they are or what they are called. Try contacting the NDSS or NDSC (ndss.org ndsc.org) for a list.

good luck, I hope the addition of the soy formula helps Osiyyah gain more weight to make the doctors happy.

laurie

Wow, that's interesting. That's the very first time I have heard something like this.

Why do the DS growth charts then start at birth?



Thanks everyone for the help and replies! I appreciate it!

[Chris]

Kokie,

All of Sarah's doctors (pediatrician, geneticist and cardiologist) always used a Ds growth chart from birth. She grew so slowly (due to her heart defect) that she wouldn't even be on the typical growth chart. Once her heart was repaired and she was completely recovered, she grew like a weed and she hasn't slowed down! At three and a half she is now in the 90th percentile.

She was unable to nurse but I did express breastmilk for the first 13 months. When she was having problems gaining weight, I added 1/2 teaspoon Neosure (high calorie formula) to two ounces of breastmilk. It was supposed to make the milk equal 27 calories. Of course, the calories in breastmilk vary.

Your mom is so blessed to have a wonderful daughter like you!

Chris