Genetic Testing (again) - Small Update Page 3

djtippietoes · May 2014

Has anyone undergone genetic testing for a baby that wasn't growing well?

Alexander weighs 11.75 lbs at 4 months. He only gained .75 lb last month. Our pediatrician is concerned. As some of you may remember, I had a very high risk of down syndrome when I was pregnant with him (due to high levels of beta HGC) and had an amnio to rule that out. Our pediatrician wants to look at the amnio results and see if he sees anything. He also mentioned the possibility of a microarray. He said it could be nothing. He could just be slow growing. He said he doesn't see anything that immediately scream a problem but there are some slight things - Alexander has very big and bulbous eyes for one. Also, his toes overlap. These might just be random things, but they could be indicators of something bigger.

ShePersisted · May 2014

Oh hun! I'm so sorry. I don't have any info but wanted to offer T&Ps that it's nothing. I'm glad your pedi is doing the due diligence though.

RondackHiker · May 2014

((Hugs)) I'm sorry.

Codypup · May 2014

I'm in a similar boat with a slow gainer, so I wanted to offer hugs. It's so stressful. My pedi suggested a visit to a GI doctor if she hasn't started gaining by her appointment next week, but didn't mention genetic testing (yet.)

I hope it turns out that he's just a slow gainer!

ziggy903 · May 2014

How are Alexander's other stats? If his weight is the only concern(aka his length and head circumference are both on track) have you considered trying higher-calorie formula?

((Hugs))
I know you've been having fears that something was not quite right with Alexander from day one- I hate that your fears have been justified, but I'm glad that your pedi is seeing what you're seeing too. I think having some testing done can't be a bad thing, it can only help.
I know personally in my situation, which is of course different from yours, I felt a little better knowing what the issue was. Almost like a diagnosis wasn't raising a bunch of questions, it was answering them. I hope that having testing done helps you feel a little better too.

Let me know if there's anything I can do for you.

Firefly9 · May 2014

Big hugs.

inluv4life2 · May 2014

Hugs, mama.

courtls22 · May 2014

((Hugs!)) Thinking of you!

gucciman3 · May 2014

Hugs momma, try to stay positive and leave google alone. Harder done than said I know but try to be positive

djtippietoes · May 2014

@codypup is your lo just not gaining weight or is she small all together? Alex is all over.

djtippietoes · May 2014

@TyrannosaurusLex‌ he's doing fine developmentally. So that part is reassuring. He makes plenty of eye contact now and smiles a lot.

djtippietoes · May 2014

@ziggy903‌ it's not just weight. Slow to grow all over. I asked if we could just feed him more and the doc said if he wasn't eating enough or getting enough calories, his head and length would advance while his weight lagged.

sdlaura · May 2014

Due to DS's heart defects, we had asked about whether it makes sense to do some genetic testing. I didn't end up having an amnio during pregnancy because the defects weren't discovered until 26 weeks and I didn't want to take the risk of a really premature baby with heart defects if something went wrong with the amnio. The cardiologists have said they don't see a reason to do further testing since there are no obvious issues physically other than the heart defects. I wouldn't have hesitated to do it, though, if there was any indication of an issue, since I think more knowledge is better.

FWIW, my almost-3-year-old nephew has super overlapping toes and has no genetic issues. They were so bad that he's already seen a specialist.

ziggy903 · May 2014

djtippietoes said:
@ziggy903‌ it's not just weight. Slow to grow all over. I asked if we could just feed him more and the doc said if he wasn't eating enough or getting enough calories, his head and length would advance while his weight lagged.

Gotcha. I was grasping at straws, but hoping he just needed higher calorie formula

I'll be thinking of you.

coralreefmom · May 2014

Hugs! Thinking of you!

spicysurro · May 2014

Lots of hugs and support!!

ramfan05 · May 2014

Thinking of you and Alexander. ((hugs))

rachaelmary · May 2014

Hugs to you!

Lemon81 · May 2014

T&P to you and your sweet Alexander. Hopefully you get some answers soon!

Codypup · May 2014

djtippietoes said:

@codypup is your lo just not gaining weight or is she small all together? Alex is all over.

She's tiny in general, but ok on length. She's been below the 5th percentile for weight since birth. She was 5'10" when we left the hospital, and was hovering around 10lbs for the past 3 weeks. Just now she was 10.10 with her diaper on, so there might (?) be some gain, but it's also the end of the day, so it could be different tomorrow morning.

The 3 week span with little weight gain really scared me, hence why I called my pediatrician. The game plan for now is to up her feeding frequency to every 2 - 2.5 hours, and I'm topping her off with formula after her 4oz bottles in the mornings and evenings.

I sort of felt like the pedi jumped the gun a little with his GI referral, considering that W has zero GI issues that we can see. But we'll reassess at her 4 month appointment next week. I think genetics plays a strong role here, but I'm also a scared FTM who just wants everything to be "normal." Stupid growth charts.

Does that sound anything like Alex? 11.75 at 4 months sounded great to me, honestly, but I'm no doctor and I don't know what Alex's curve is like.

iwubrory · May 2014

Hugs, I hope you get answers soon.

1linedrawing · May 2014

Just want to send ((hugs))!

slwprincess · May 2014

The eye thing makes me wonder about his thyroid? That was how my pedi diagnosed me with overactive thyroid- my eyes were big and I was not gaining weight. At 17 yrs old, I was barely 90 lbs and had basically stopped growing at 13. Even if he passed his screening at birth, its worth double checking as long as they are drawing blood. Hugs mama- I hope everything comes back normal and he's just on his own growth curve!

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TessyMessy · May 2014

Big ((hugs)) DJ. I'm sorry you guys are still going through this and I hope you get answers soon.

emar129 · May 2014

I've got a little baby too. It's kind of scary when they aren't gaining! I hope the doc can combine that with other possible concerns and figure it out!!! Thinking of you and Alexander!

MissDemeanor · May 2014

T&P's for you and Alexander

Noethola · May 2014

((Hugs)) sweetie!

keags5496 · May 2014

Huge hugs! Send lots of comforting thoughts your way. We're here for us when you need us

cattuccino · May 2014

Sending you all the hugs.

ScaredOfCats · May 2014

I hope you get the answers you need soon. Prayers being sent to your family.

djtippietoes · May 2014

@junebugz1 What did they discover was wrong with your LO?

djtippietoes · May 2014

@jammersc no, they didn't say anything about a pediatric endocrinologist.

Thanks for everyone's support. Hopefully he's just small.

southerngal07 · May 2014

Hugs momma! Keeping you guys in my thoughts.

MamaHollywood27 · May 2014

((((Hugs)))) my LO was just around 12lbs at his 4 month apt but 25 3/4 inches. He had gained 3lbs from his 3 month apt so doc said he is just suuuper long and appears "thin". I think 11.75 is a good weight BUT I see your concern is not just that but a few factors. Fwiw he is adorable in the HDBD I have seen

hopefully you get answers soon.

Eta: LO was 6.4lbs at 35 weeks- I know your LO was early also , may w that plays a role?

djtippietoes · May 2014

@mamahollywood27 he is 23 3/4 inches. They basically just said that he should be starting to catch up by now and he's not for some reason. They thought that IUGR is generally from a placental issue and since the placenta isn't a factor anymore, he should be catching up. At least that's how it was explained to me.

lihau88 · May 2014

Sending lots of ((hugs)) to you @djtippietoes‌ and Alexander!! I hope you get some answers. While I don't have any advice, I can definitely relate. I feel like Lilly isn't growing as much as she should either. We didn't have a 3 month appt and so we just weighed and measured her on our own and she's definitely not growing like I thought she would. We go to her 4 month appt on Friday but I estimate her to be the same as you mentioned that Alexander is.

My LO doesn't have the other things you mentioned so I can only imagine how scary the 'unknown' is. Keep us posted!!

ziggy903 · May 2014

@Junebugz1‌ the mod on the preemie boards DD has CF, if you wanted someone on TB to talk to

boogerbearoriginal · May 2014

::hugs::

I can't imagine how scary it is with all the unknowns but like PPs mentioned, having a diagnosis is truly helpful in knowing how to address any issues and opens doors for many support systems.

FX that he's just a small guy and it's nothing serious.

djtippietoes · May 2014

@Junebugz1‌ sorry to hear your going through that but glad they were able to figure it out and get him gaining!

ziggy903 · May 2014

Junebugz1 said:

ziggy903 said:
@Junebugz1‌ the mod on the preemie boards DD has CF, if you wanted someone on TB to talk to
@ziggy903‌ would you mind PM'ing me her screenname? Or will it be obvious who the mod is if I lurk?

Eta- nevermind, found it quickly! Thanks!!

I was going to say it'll be obvious

you're welcome! It's wonderful to be able to talk to someone who's been there before

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