congenital hypothyroidism? - Mothering Forums
 
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#1 of 15 Old 03-29-2007, 12:00 AM - Thread Starter
 
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i found out my baby has this today they were a month late in their diagnosis.. and time is of the essence with this disorder I was wondering if there were any other moms who have children with hypothyroidism. i'm so worried. i have to give him his first med soon and I'm scared.. he's so little. how do you do it.. since i am breastfeeding, can i crush the tablet and mix it with a little BM and give it to him in a medicine dropper? or do i have to use water? this is so upsetting
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#2 of 15 Old 03-29-2007, 01:15 AM
 
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Welcome to MDC - I'm sure you'll find lots of support from other mommies but I suggest that you post this in the Special Needs subforum so more people will see it.

Here's the link.

Early intervention specialist and parent consultant since 2002.
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#3 of 15 Old 03-29-2007, 01:22 AM
 
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How big is the med? Is it a tablet? We always mixed meds with water, put it into a syringe, and then shoot it to the back of his mouth. You should be able to get the pharmacy to give you directions on what to do. Even if your babe is itty bitty, most people don't mix with a bottle who are bottle feeding.

Hopefully he will be okay, even though there was a delay.

Come on over to special needs!
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#4 of 15 Old 03-29-2007, 10:09 PM
 
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The nurse in me had to answer this. First of all, sorry for the news I can understand the stress, shock and confusion this all has caused you.

Thankfully hypothyroidism (it can also be called "cretinism" when referring to infants) is a pretty manageable disorder. Hopefully your doctor spoke with you at length about this and answered any questions you may have had. If not, you have every right to get all your questions answered.

The most popular thyroid replacement that I see (I see a lot) is crushable according to my drug guide so you should be able to mix it with water/BM and give it with a medicine dropper. For best results the med should be given in the morning and on an empty stomach. Make sure you read the information sheet that comes with all medication so you know what you're looking for regarding adverse reactions.

When you pick up the med from the pharmacy they should ask you if you want to speak with the pharmacist. If you have questions this is the time to ask them. Or you can call the pharmacy and they will help you out.
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#5 of 15 Old 03-29-2007, 11:07 PM
 
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What a variety of things you must be feeling.
Welcome to MDC.
I was syringing meds with my son but the pharmacy compounded it for me into a liquid (it wasn't this medication). However since then I've done lots of tablet meds for my son and crushed them up and dissolved them into water and used it that way. He'll get used to it...aim the med toward his cheek and in the back of the mouth (so the taste isn't on his tongue) and go slowly so he isn't overwhelmed. I really hope they caught it quick enough that he is going to be ok long term. In my understanding the damage occurs over time not all at once.

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#6 of 15 Old 03-29-2007, 11:53 PM
 
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I would almost swear another mama here has a child with this exact same thing. I can't remember who, though.

I used sbgrace's method when I had to give my ds reflux meds when he was teeny and still bfing. I would slide the syringe in the corner of his mouth, alongside my breast, while he was nursing, and slowly push the plunger. That was the most effective way for me.

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#7 of 15 Old 04-05-2007, 08:19 PM
 
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I guess I'm reviving this thread- Finch, I am that mama with the baby with congenital hypothyroidism.
OP- how are things going? I know how challenging it is to deal with this situation- and I am still trying to figure things out, my dd is 2.5 and, well, we are having challenges to say the least.
All my best.

Mama to 5 babies. UCer, too!
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#8 of 15 Old 04-05-2007, 09:21 PM
 
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I knew we had another mama here!! There you are! I have a spotty memory, but don't we all...LOL.

I hope the OP comes back and sees you!
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#9 of 15 Old 04-05-2007, 11:56 PM
 
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My daughter has hypothyroidism as well. I crush her pill first thing in the morning and put it on a teeny tiny amount of applesauce. The taste does not seem to bother her at all - she opens right up every time.
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#10 of 15 Old 04-06-2007, 04:34 AM - Thread Starter
 
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thanks for responding everyone. i'm still letting it sink in. i was looking at the statistics for CH and wonder why, out of the thousands, it had to be my son

i have a few questions for the mommies with CH.. how do you deal with the blood drawings? my son has been poked so many times since he's been born i've lost count. i'm already dreading his next one in two weeks. he cries so hard and it breaks my heart.. is there anything i can do to help him?

has your child's thyroid levels been consistently normal since they've been on medication? what your child's levels before they went on medication? my son's t4 was around 2 right before he was diagnosed.. that was what caused him to need treatment.

amyjeans, what challenges have you been experiencing? right now my challenges seem to be the blood drawings and him hating his medication.

i'm so worried about him..
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#11 of 15 Old 04-06-2007, 04:54 AM
 
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I'm hypo myself and I just wanted to let you know, there is a great forum "Stop the Thyroid Madness"....there is a childrens forum on it: http://www.stopthethyroidmadness.com/community/

The moderator has children that are hypo. They are really great at answering any questions you might have.
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#12 of 15 Old 04-06-2007, 09:59 AM
 
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well, my challenges are many. First, I have yet to find a doctor in my area who is willing to go outside his comfort level and pursue alternatives to just "drugs"
I have been through about 6 endos in ct and now we are trying to get to Yale where there is a pediatric thyroid center. It's a teaching hospital so perhaps those doctors will be more receptive.
My beef with these guys is I have lots of questions- like:
Will she hit puberty at 8 yrs old? Will she be able to have children? Will her thyroid decend to its proper place? Will it start working ever?
I think these are legitimate questions- but for some reason the docs have either ignored my questions, told me not to worry about it, or they just don't know.
That really pissed me off. I have fired every doctor we have encountered- to their faces actually, because I'm not playing nice anymore. I don't care about their ego or their fellowship with other doctors- it's my kids life I am dealing with- so watch out for mama bear!
I digress...
So now, we have some other things I am monitoring- like growth. A definate side effect to CH is stunted growth.
She was off the charts up until 2 weeks ago. Now she is in the 50th % for height and weight. IF her parents were shorter, it wouldn't be a concern, but- Greg is 6ft and I'm 5'9". My kids should not be so short. All my other girls are off the charts.
After learning this, we discovered she has Strabismus and needs to wear glasses because she is also farsighted. (She is 2.5 yrs old by the way-try finding glasses that fit and won't be trashed in 50 seconds!)
And the worst of it is- her optic nerves are grey- meaning a severe lack of blood. WHY???? Pressure from her %^$&ing thyroid on her facial structure because it is in the wrong place. This can lead to permanent eye damage, and possible blindness if not treated.

Okay- I am totally not trying to freak you out (sorry if I have already) but my whole point is- why haven't these doctors talked about any of this? I swear modern medicine is dysfunctional in that they wait for a problem and firefight to fix it instead of my logic of PREVENTATIVE MAINTENANCE!!!

So, long story short- we are gathering all of our resources and will go to the ends of the earth to find a doctor, regimine, therapy, whatever that allows my little girl to be just that- a little girl and certainly not a number.
To treat the pressure, we are doing cranial sacral work with a chiropractor, following the Feingold diet for temperment (oh yeah, certain foods are not good for thyroid disorders) and taking her to vision therapy as well.
I would be happy to chat at length with you about this (can you tell!) so feel free to PM me.
I'm going to jump over to that site the PP posted.
All my best!

Be well
amyjean

Mama to 5 babies. UCer, too!
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#13 of 15 Old 04-08-2007, 11:56 PM
 
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Hello! I am so new here... But you other moms are living the same thing we are. Our youngest baby is 10 months old. At almost 4 months old he was dxed with cretinism. He was born at a hospital in a larger town for the NICU factor (our local hospital does not have one, he was premature, etc.) so our local doctors did not take care of him in the NICU. Long story short: he was almost 8 lbs at birth, all the symptoms of hypothyroid, with 20/20 hindsight we would all have made things different... The hospital, including of course staff and doctors, admit they 'forgot' the newborn screen and all follow-up procedure was apparently tossed out the window. Our family doctor diagnosed him at almost 4 months old and only 9 lbs. He didn't make eye contact. No smile. He was the same baby we brought home from the hospital many weeks earlier... All the physical features of cretinism by that time (the hypothyroidism had been able to develop further... but we saw him every day and he was just our gorgeous baby, now in pics he does look different...) So, he went on the medication that day. Synthroid. Went to the state chidlren's hospital the next day.
He gets blood drawn still every 6 weeks. He goes tomorrow. Now, after tomorrow I think he goes to ever 12 weeks. He was on 50 mg of Synthroid. Now it is 44. I expect it will go back up a bit with this check.
He will be a year old May 26th. He does not sit up. He does not crawl... He does roll over, grab things now and he is the HAPPIEST BABY in the world!!! He does not like solid foods, including baby food, pudding, even in a bottle... I don't know where we are going with that.
I have just sat here in amazement! Amyjeans, and everyone, were your children diagnosed at birth on the newborn screens or was it later? With Nikos, we had hoped that even though the newborn screen was not done, that his malfunctioned later on... But that was not the case as he does not have a thyroid. So, he went a significant amount of time without that hormone.
We just have no idea what to expect. He has therapy... The therapists don't know what to expect... I just want to talk to people that are doing the same things we are... Nobody else seems to know what we are talking about.
(Oh yea, I almost forgot! The pills! His Synthroid are so small and the 44 mg are actually 1/2 of the 88mgs, I have always just layed them on his tongue and put his bottle in his mouth. He swallows them. Gone. Reason being that when I first started, they told me to crush them between two spoons and powder kind of "poofed" and I was afraid for him to lose even a tiny bit of the hormone, so I just tried it. And it worked. He never choked or anything.)
I am sorry this has been so long. You are the very first moms I have ever talked to with children with this.
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#14 of 15 Old 04-09-2007, 09:06 AM
 
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Quote:
Originally Posted by NocturnalDaze View Post
I'm hypo myself and I just wanted to let you know, there is a great forum "Stop the Thyroid Madness"....there is a childrens forum on it: http://www.stopthethyroidmadness.com/community/

The moderator has children that are hypo. They are really great at answering any questions you might have.

THANK YOU THANK YOU for this site! I have armour for my battles now!
(pun intended!!)

Mama to 5 babies. UCer, too!
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#15 of 15 Old 04-09-2007, 01:19 PM
 
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Your very welcome!!
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