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Mothering › Mothering Forums › Pregnancy and Birth › Birth and Beyond › 8 days old, and we have to give our DD a pill daily. Help us with figure this out, please. We are desperate.
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8 days old, and we have to give our DD a pill daily. Help us with figure this out, please. We are...

post #1 of 38
Thread Starter 
Our DD's PKU test came back with her thyroid levels being drastically off. We had a second test done to confirm. Both test show that her thyroid isn't working. We were giving a pill and told she needs this once a day. We see a specialist tomorrow at Mass General.

Question: how the heck have you succeeded in giving a newborn a pill? We crush the crap out of it, and have tried putting it in a nipple with some breastmilk. The pill, no matter how crushed it is, just collects in the nipple and she can't suck out the milk or the medicine. We put numerous wholes in the nipple, the pill residue still collect in the tip of the nipple and she can't get it down. We also tried a dropper. We crush the pill, mix it with breastmilk, and put the dropper in her mouth with very tiny drops at a time. This has worked twice but she has now discovered how to not swallow and to push the liquid mixture out of her mouth.

This is a very serious matter. Life altering, and here we are new parents trying to figure out how to best get this medicine into her.

Can anyone help? What aren't we thinking of?!

Please and thank you.
post #2 of 38
I'm so sorry...I have been thinking about your baby today. I am soooo glad you did the PKU testing/ metabolic screening. Hopefully this will be a good example about how life saving this test is because sometimes people feel it is not needed.

I would continue to crush it and put it in the dropper with breast milk. You need to put it deep in her cheek and squeeze. I would not squeeze all of it at once, but maybe half and half. I wouldn't lay her back all the way, just elevate her so it's easier to swallow.

How is she nursing?
post #3 of 38
I'd probably try crushing the pill into dust, then dip my finger in the dust, and place in her mouth occacionally for her to suck off.
Please talk to the specialist about a specially compounded liquid medication. Often a particular type of pharmacist can make pills into liquid. I haven't a clue whether thyroid medication can be made liquid, but it would help.
post #4 of 38
I am sure there is a liquid form available at least I have read about it.

With thyroid issues there isnt a need for formula supplementing that I am aware of since they thyroid has nothing to do with what you ingest.
post #5 of 38
I don't understand, isn't there a liquid form? I can't believe they gave you a pill to give her. Call the Pharmacist tonight, before they close.
post #6 of 38
Look for a compounding pharmacy in your area, they can make it into a liquid for you, even flavor it.

Katie
post #7 of 38
Thread Starter 
jeliphish: the PKU testing is beyond valuable, as you know. We are SO grateful this was caught at day 5 of her life, and she was taking medicine of that night. IF not, and we waited until she started showing signs it would have been too late to turn back the clock on her mental development, something that cannot be reverse in regards to living a normal life. I cannot imagine one reason to not have the PKU test. Test results are beyond scary. We are beyond anxious to speak to a specialist tomorrow, and we are beyond thankful, grateful this test exist.

In regards to nursing, I've had a problem with my milk coming in, still. The LC and my midwife put me on raglin (not sure if that is how it is spelled?), and we are supplementing with a friend's breastmilk, and when necessary formula. She is an awesome little nurser. The problem is all on my side. I hope once we have some answers tomorrow about her thyroid, I will relax enough to produce. . .my body is still recovery from labor, and I'm told that I should add iron supplements, so I've done that too. We started using a SNS today to get the supplemental milk into her system.

Apricot & MCatLvrMom2A&X: the pharmacy told us that there is a liquid version. . .not yet approved by the FDA. Hopefully the endocrinologist will know more about this. . .it has taken us 45-75 minutes to get this one pill into her system.

Does anyone have an opinion about when we should give her the pill? Meaning, we tried last night after she ate, and she spit the breastmilk out. She wanted nothing to do with it. We are new to this, and it is hard not to beat ourselves up for not having this figured out yet. . espically when she is the most precious thing in our world, and we have to get this into her. Talk about stress.

Thank you.
post #8 of 38
Put it in a dropper crushed up with some breastmilk. Squirt it into her mouth on the side in her cheek and blow hard on her face. Blowing will make her hold her breath and swallow. Good luck!
post #9 of 38
Cross post this in Special Needs Parenting.

http://www.mothering.com/discussions...play.php?f=157
post #10 of 38
My brother has no thyroid. It is available in liquid form...heck and he was a babe almost 20yrs ago...what were they thinking giving you a pill?
post #11 of 38
Thread Starter 
I don't know what they were thinking giving us a pill except that that was a direct script from the endocrinologist herself. DH asked the pharmacy about liquid version as it is approved in other countries but not here, and when he asked about compounding pharmarcy...he was told that that will destroy the orginal component of the medicine, and she needs to get an exact amount, which can't be tabulated in a liquid form? I'm very confused. We have a list of questions for the endocrinologist tomorrow, but first we have to get through the medicine adventure tonight.
post #12 of 38
Well we are confused too!

post #13 of 38
With your supply issues has anyone checked your thyroid function? My thyroid wasn't working right and my energy and breastmilk supply tanked. I'm glad your dd's condition was caught early and I sure hope there's an alternative to a pill!
post #14 of 38
Thread Starter 
Veritaserum: good idea. I'm going to call my midwife tomorrow and ask her. I did start all the iron supplements today. Probably a good idea to get my blood checked again now that it has been a week after labor.
post #15 of 38
Quote:
Originally Posted by ErinsJuneBug View Post
Put it in a dropper crushed up with some breastmilk. Squirt it into her mouth on the side in her cheek and blow hard on her face. Blowing will make her hold her breath and swallow. Good luck!


We were given a pill for DDs severe reflux. We mushed it up/mixed with formula and did the above.

Then after about 2 months we got a compounded formula (specialty pharmacy) that was flavored. It went over much better and we paid a higher copay, but we felt she took more of it and it was much much easier to make sure she got what she needed.

For a few month our insurance did not cover her meds since they were not FDA approved for her age. Well, that lasted only 2 months (her DR gave us samples to get us through) and with letters from Dr and contacting our insurance about the meds.

Now that she is older, they have a disolvable tablet- which I think is the best and it is covered by FDA (we could not use it earlier due to her weight too low for the lowest tablet dosage).

Ask the Endocrinologist for samples, donation, contact the company (often they will have free or reduced meds for some patients that can not get them through insurance or afford them).

post #16 of 38
Could you use a medicine syringe? What condition does your LO have?
post #17 of 38
what about a suppository?
post #18 of 38
Quote:
Originally Posted by Kuba'sMama View Post
what about a suppository?
This is what I was thinking. I really wish suppositories weren't so shunned in North America.
post #19 of 38
There have got to be online support groups for parents of babies with congenital hypothyroidism. I know my sil had some trouble getting the hang of giving her dd that was hypo her levothyroxine but she had it figured out eventually. PM me if you can't get the info you need and I'll contact her and ask her how she did it.
post #20 of 38
Quote:
Originally Posted by lellian View Post
and when he asked about compounding pharmarcy...he was told that that will destroy the orginal component of the medicine, and she needs to get an exact amount, which can't be tabulated in a liquid form?
It may be difficult to tabulate it in liquid form, but trying to give a newborn a crushed up tablet is not going to result in her getting the exact amount either, in fact you have no way of knowing how much she is getting. Maybe talk to the endo about trying the compounding pharmacy and retesting to see if the compounded formulation is working. You could also ask the pharmacist at the compounding pharmacy about the uniformity and stability of the active ingredient when compounded, maybe they will have some hopeful information for you.

I hope it gets easier, but glad it was caught early!
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Mothering › Mothering Forums › Pregnancy and Birth › Birth and Beyond › 8 days old, and we have to give our DD a pill daily. Help us with figure this out, please. We are desperate.