Any mums out there whose baby has Congenital Hypothyroidism?

[x Michelle x]

As the title says really...
Just wondering if there was anyone out there i could talk to?

 

[Emmea12uk]

A friend of mine has a 1yr old who was born with no thyroid. If you are on Facebook I could put you in touch?

 

[x Michelle x]

Just shamelessly bumping this

 

[Ryders_Mommie]

Hey, my name is Katie. I have a 9 month old son named Ryder and he was born with hypothyroidish and panhypapitutarism.

 

[x Michelle x]

Hi
How is your little boy getting on? Was he diagnosed at birth?

 

[Ryders_Mommie]

He was diagnosed when he was a month old. We had no idea of any of the problems when he was born because we had none of the major signs of it. he was also born with gastroschisis, his intestine on the outside of his body, and a semi paralized diaphram. It has been tough to overcome all of it for him, but he is advancing amazing now. Does your daughter have any developmental delays ?

 

[x Michelle x]

Aw sounds like you guys have been thru a lot
Tabitha was born with a goiter (swollen neck) and after 2 days and a lot of blood tests she was diagnosed.
She doesn't seem to have any delays at all, but then I suppose it's kinda hard to tell tho! She rolled really early but hasn't mastered real crawling, just zombie crawling as I call it! She seems quite a sleepy baby, but again as she is my first, it's hard to know if it's due to her condition or that she just likes her sleep! What dose of thyroxine is your little boy on? We are 25mcg one day and 50 the next. Bloods every 8 weeks at the hospital and monitored for her growth too, but she went from 9th centile to almost 50th and has constantly stayed there for length, weight and head circ.
I'm pregnant again, and this little boy has a 1 in 4 chance of CH, but if he does have it we'll be a lot more prepared this time!

 

[Ryders_Mommie]

Well, he is on levothyroxine 25mcg at 8 am and he is on hydracortizone 0.5 at 8 am and 2 pm and 0.25 at 8 pm. He sleeps alot also. We go to the doctor about every 3 to 4 months now that we have everything figured out, ( we hope we do that is ). Is there anything you do different wioth her than yoiu wuold a normal baby?

 

[x Michelle x]

Absolutely nothing!
Do you do anything different?

 

[ella n girls]

hi i have two children with hypothyroidism both were discovered from birth with the heel prick test , my youngest has cp , but my elder one (3) has no delays and is extremely bright and it doesnt affect her at all she asks me for her tablets and pops them in her self , they are both on 50mcg one day 75mcg the next xxx

 

[x Michelle x]

Hi ella n girls
So is it congenital with your girls?
Glad to hear they are doing so well, when i found out i googled it - probably the worst thing i could've done!!!

 

[Ryders_Mommie]

I don't really do anything different besides the fact that we are on an extreamly strict routine. Wake up at 6 every am. Meds at 8am. Breakfast at 8:30am. Nap at 10 am. Wake up at 12 n and eat lunch. Meds at 2 pm. Nap at 4:30 pm. Wake up at 6 pm. Dinner at 7 pm. Meds at 8 pm. Bed at 9 pm. We don't do anything out of the ordinary. He has tons of allergies though. He is allergic to the world it seems like. Lol.

 

[x Michelle x]

We have a pretty strict routine too but mainly as I have another LO coming so Tabitha needs to be happy and being in a routine enables that! Luckily we just pop her tablet whole in her morning yoghurt and she is so busy eating it she doesn't notice it's even in there!
Bless him with his allergies! We luckily don't have any over here, she seems pretty robust. Caught her eating mud off the floor the other day (and saying numnumnum) it was from the side of my shoe, we honestly have a pretty clean house!
We do have her in bed asleep by 7pm tho, must be tiring have him up until 9!
I think she is getting ready to drop her afternoon nap tho, she sometimes just doesn't want it but I don't mind as its bed by 6:30 those nights! She generally sleeps until 7:30am too, although when it's daddy's turn at the weekend she knows to sleep to a least 8, little monkey!

 

[Ryders_Mommie]

Well, his daddie is barely involved at all. that is very cute about the whole her eating mud. Lol. I wish he would go to bed so early. It is tough him staying up until 9 at night. Does she take any other medicines?

 

[Zondon]

Hi all,

I know this is a dead thread really, but my little one has congenital hypothyroidism too and I was wondering how the other little ones with CH are doing, what dose of thyroxine they're on etc etc?

I'd love to chat to other mums with kids with CH!

Zondon