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Slow weight gain and genetic abnormalities - SUPPORT NEEDED

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Expand view Topic review: Slow weight gain and genetic abnormalities - SUPPORT NEEDED

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by milesymommy » Wed Jan 19, 2011 08:09 am

I forgot to mention... I add one scoop of toddler formula to a cup (6-9 oz) whole milk. One scoop is supposed to be mixed with 2 oz of water; I add it to milk because I think toddler formula is a rip-off; whole milk is fine for toddlers. But since I'm trying to maximize calories and nutrients, adding a little bit of it to whole milk just gives Josh a little extra nutrition and calories.

BTW, Josh is about a month older than your daughter. He weighs 21 pounds. His head circumference is ~ 60%, so that's half his weight. lol Most 9-12 month olds are bigger than he is, except his head. lol

I'm glad all the tests have come back negative!!

take care
Aimee

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by glimmer » Tue Jan 18, 2011 11:39 am

Amanda - there are a lot of cons to peeing in the potty. You have to bring extra-trousers everywhere
and there is another tool to exert control. Just wait a few more months....
:-)

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by glimmer » Tue Jan 18, 2011 11:37 am

Milesmommy and Amanda,
thanks for sharing your stories and worries.
We finally had the appointment with the pediatric genticist.
She confirmed that our daughter does not fit any known genetic syndrome. That's a relief!
However, she didn't say that she has nothing, but that it could be something extremely rare and/or subtle.
Well, I don't know what to make about that. I guess they can never give anyone the "all-clear".
They will run some further tests (the micro-array Jamie mentioned) and the results will take months...
All other tests have come back normal and healthy. I guess that's good, although the best-case scenario
would be something that can be easily fixed :-)

We tried pediasure - she liked it for three days and then cooled off. She will have a few sips and is then done.
I am experimenting right now with home-made smoothies with extra-cream and ice-cream right now. At least I like them a lot
better and it's me who finishes them.... (And I do not need extra-high calorie diet by the way...)
The cystic fibrosis has some receipies for high-calorie meals. They also test for cystic fibrosis, which came back negative.
Given that she only had one chest infection when everybody else in the family was sick as well, I had anticipated this result,
but it's still a plus.

My son fell from the 50% to the 12% and is now at 3 years 50% percentile again. But 12% is still a lot better than 0.01% percentile
or something like that. She is 17lb at 15.5 months and I have never seen a chart that show the lower percentiles.

Thanks a lot and good luck to you all.

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by amanda » Tue Jan 18, 2011 01:57 am

Hi - just wanted to chime in and offer my experience....

A couple of things. My pedi always said that as long a a child was growing - gaining at all and was moving forwards on developmental tasks then that was a good sign. I know that my l3 yr old ittle bitty preemie still has talking issues (we are in speech), only weighs 24 pounds, and doesn't really want to eat (and let's not talk about potty training). I agree that somewhere around the 2 yr old mark they all decide that eating is within their control and exert it. I know this is probably bad but I will let her eat anything, anywhere, any time. For example: she *loves* chocolate milk. Loves it. When she goes on a hunger strike she'll always ask for choc-choc. I use whole milk and add cream into it to get her some fat and calories. I'm quite sure that does a lot for wanting it. :)

At this stage I'm probably setting up a bad habit but we do sit down for dinner, require her to eat some food, and then offer more as the night wears on.

Bad mommy I know but I just want her to gain some weight.
Well, I'd like for her to pee in the potty too but I guess I'll just have to wait on that.

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by milesymommy » Thu Jan 13, 2011 02:59 am

You sound a lot like me!
My first DS, Miles, was born at 36 weeks, 7lbs, 6 oz. We had weight issue with him initially - related to him being early and me trying to BF - but then he gained fine. He slowly slipped from about the 60th percentile to the 25th for weight, but otherwise on track developmentally and ped was not concerned.
DS2, Josh, was born at 39 weeks, 7lbs, 14 oz. He started out at the 85%. By 11 months, he was below 5%. Our pediatrician ran the typical tests to rule out issues like celiac disease. All came back negative. Josh eats and eats - he just doesn't gain any weight. The ped had me put him on pediasure - which after 2 months did boost him up to the 15th percentile. We had to wean him off pediasure because it got to the point that he didn't want to eat solids anymore, just wanted pediasure. So he's 16 months now, barely 21 pounds, full of energy and developmentally on track. So were just watching to make sure he continues to be developmentally on track.
I know its hard not to worry - thats what moms do best. I understand what you're going through!

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by glimmer » Wed Jan 05, 2011 12:42 am

Hi Jamie,
thanks for your response and for sharing your experience.
Yes, I agree that some testing is the right way to go. From my online-searches I have learned that there are a number of conditions,
where there is a metabolic component and they can lead to an undernourishment of the brain, which leads to "mental retardation".
So that's an example where an interventions is most helpful and indicated. It's so hard to decide when you have to follow up something and when you
have to "just" adjust too it and stop chasing it.
I read in your log about Anna's button but didn't get to the part aboutt he seizure and subsequent appetite. This is amazing.
So often amazing things happen, that we just do not have control of. Thanks so much for your prayers!

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by jamie w » Mon Jan 03, 2011 03:35 am

After countless genetic tests, they found nothing. They basically decided she just has cerebral palsy. Her small head, lower set ears, and eye shape are not all that far off from my husband's. She has had 3 different rounds of testing and the last was called a Microarray which is the newest testing offered. It still turned up nothing. I am done with genetics. Sure, as science moves forward I'm certain they will find some genetic flaw in all of us and Anna is no different. I have just decided that if they haven't found it by now then it just isn't worth finding. I do recommend getting the initial testing done like I had said before because sometimes it can provide an easy fix. I hope your case turns out to be just like Trish though where you just have teeny little adorable kids. And for hope...Anna ended up with a G button (feeding tube) that we used for about a year. One day out of the blue she had a seizure and then just started eating like crazy. Her Gbutton is now out and she eats more than her 6 year old sister. Sometimes things just finally click. I remember the wait for the appointment being so hard and then it takes a few weeks to get the results back. I pray you can find some peace in the waiting time. I will be thinking about you often!

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by glimmer » Mon Jan 03, 2011 01:20 am

Jamie and Trish - thanks for your kind words.

Jamie - I have been following your story and blog and you are incredibly strong woman and an excellent writer.
I just love the idea of "life in Holland" and whenever I think there might be a genetic problem, I console myself with thinking "well then I will just live in Holland" meaning that while life will be different from what I expected, I will love her just as much! I wish you the very best for your currant pregnancy and understand so well your worries. I read part of your blog but never what the outcome of the genetic testing was for your daughter? Not that we always have to know, only if it makes a change for the better.

Trish - thanks for your reassuring post. It's good to know that there are small children that are totally fine. It's just what I want to hear :-)
Sometimes I am convinced she is completely normal and sometimes I realize that there is so much out there I just don't know and I wouldn't pick signal of things I just don't know about. I am glad the waiting is soon over. In many ways it will be easier to deal with a diagnosis than with this uncertainty.

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by trish » Thu Dec 30, 2010 10:30 am

(((HUGS))) I don't know anything about genetic abnormalities but all 3 of my girls have been small and slow gainers. My first was full term at 37 weeks & my biggest baby at 6 lbs 13 oz but was only 13 lbs at 6 months and 17 something at a year. My 2nd DD followed along the same path & I remember she was only 26 lbs at 3 years. And that's right where my 3rd DD is (her 3rd b-day was Dec. 27). She wore an 18 month Santa suit this Christmas (that she wore last Christmas too). 24 month & 2T pants & clothes are just fitting now (in the past 2 months). With shoes she was right at 35 inches (based on the "you have to be 'this' high to ride" sign at Disney 3 weeks ago - I haven't had her 3 year WCV yet LOL!)

She was barely premature at 36 weeks so I can't "blame" it on that. With all 3 I BF but we added extra formula if they got an EBM bottle. Then we added formula and/or carnation drink mix to milk, drank pediasure, added butter to everything etc. They all dropped to "below 3rd percentile" at points but still s-l-o-w-l-y gained & continued on their own curve. My Peds weren't overly concerned since they were developing normally but I had many uber concerned extended family members - OYE!

Hopefully she is just being overly cautious & just wants to rule any genetic issues out before starting a weight gain plan. But feel free to vent & ask questions here. We're here for you. (((HUGS)))

Re: Slow weight gain and genetic abnormalities - SUPPORT NEE

Post by jamie w » Wed Dec 29, 2010 10:25 am

I am so sorry you are having to travel this road. I won't go over our whole story but the short of it is this- I was diagnosed with PE at 24 weeks, delivered at 38, and baby and I went home 2 days later and all seemed well. She would not gain weight and we were sent to GI and then neuro and then genetics... My baby ended up having cerebral palsy. I am not saying that is going on with you AT ALL, just telling you where my knowledge base comes from. My daughter also has some subtle physical abnormalities like her small ears and her almond shaped eyes. Anyway...I know it will never be an easy pill to swallow when they start looking for what is wrong if anything at all. The good news is that sometimes they find nothing at all and you just end up boosting calories with things like Duocal and Polycose. If they do find something, some things are easily dealt with. Some kids have different metabolic disturbances that if you feed them certain RX formulas they will do fine and gain weight with no problems. The only way to find those things is through genetic testing which is blood testing. It is far better to do the testing adn find nothing wrong and then just go the calorie boosting route than to just boost calories and delay the testing because if there is a metabolic disturbance you may end up doing more harm than good. Nobody can make this easier for you because if I could, believe me, I would. It has been a hard road but I will tell you that 3 years into it, I wouldn't trade a second of it for what it has taught me. I will not tell you not to worry because that is impossible. I will be here for you though and I am an open book when it comes to all we have been through so do not hesitate to come to me with any questions. I hope this nightmare is over for you soon!

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