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

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#1 of 38 Old 01-19-2010, 10:15 PM - Thread Starter
 
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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.
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#2 of 38 Old 01-19-2010, 10:25 PM
 
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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?

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#3 of 38 Old 01-19-2010, 10:28 PM
 
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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.

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#4 of 38 Old 01-19-2010, 10:30 PM
 
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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.

 
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#5 of 38 Old 01-19-2010, 10:37 PM
 
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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.

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#6 of 38 Old 01-19-2010, 10:38 PM
 
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Look for a compounding pharmacy in your area, they can make it into a liquid for you, even flavor it.

Katie
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#7 of 38 Old 01-19-2010, 10:46 PM - Thread Starter
 
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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.
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#8 of 38 Old 01-19-2010, 10:47 PM
 
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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!
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#9 of 38 Old 01-19-2010, 10:48 PM
 
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Cross post this in Special Needs Parenting.

http://www.mothering.com/discussions...play.php?f=157

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#10 of 38 Old 01-19-2010, 10:50 PM
 
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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?

Mama to expecting Babe 2
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#11 of 38 Old 01-19-2010, 10:58 PM - Thread Starter
 
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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.
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#12 of 38 Old 01-19-2010, 11:01 PM
 
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Well we are confused too!


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#13 of 38 Old 01-19-2010, 11:07 PM
 
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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!

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#14 of 38 Old 01-19-2010, 11:26 PM - Thread Starter
 
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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.
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#15 of 38 Old 01-19-2010, 11:33 PM
 
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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).

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#16 of 38 Old 01-19-2010, 11:34 PM
 
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Could you use a medicine syringe? What condition does your LO have?
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#17 of 38 Old 01-20-2010, 12:05 AM
 
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what about a suppository?

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#18 of 38 Old 01-20-2010, 12:34 AM
 
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what about a suppository?
This is what I was thinking. I really wish suppositories weren't so shunned in North America.

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#19 of 38 Old 01-20-2010, 12:40 AM
 
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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.

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#20 of 38 Old 01-20-2010, 01:23 AM
 
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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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#21 of 38 Old 01-20-2010, 02:16 AM
 
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Will it dissolve in breastmilk? We used the cheek pocket technique to get meds in my son when he was an infant. It's described here. http://www.askdrsears.com/html/10/T110206.asp Our meds were liquid but horrible tasting.

He also talks about putting tiny pieces of tablets in the cheek. I can't imagine why they prescribed a pill for an infant.

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#22 of 38 Old 01-20-2010, 12:20 PM
 
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Stupid question, but have you called around to other pharmacies? Lots of times pharmacies won't carry every form of the medication but other pharmacies will (like when my son needed to be on amoxicillin right before we were set to head out of town, so I requested the chewables but our pharmacy didn't carry them - their chain in the next town over did, though! )

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#23 of 38 Old 01-20-2010, 12:42 PM
 
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Talk to your endo about it. Is he a specific paediatric endocrinologist?

I have Hashi's, and take levothyroxine every day. These are the guidelines for MY meds (which may well be different for a baby, but you need to explore it all i think since i don't know what form you've been given).

It must be taken on an empty stomach (the pill is supposed to get to the small intestine without being "digested" in the stomach for optimum absorption - washing it down with water upon waking and at least 30mins before food is how they advise adults/younger people to do it, but this is obviously not possible with a baby).
It must absolutely not be taken with a vitamin pill, an iron pill or anything with calcium in it (including milk) because it binds with some other minerals and will not get into the blood properly if that happens.
It should not be chewed, powdered or broken unless to adjust dose (25mcgm is the smallest pill readily available for adults, this will not be the case for newborns) - i'm not sure why.

As a person with hypothyroidism who has been on this medication for years i would give it to my newborn as i would a cat - i.e. i would put it far back on the tongue and then squirt a little liquid (of whatever sort was deemed ok - breastmilk or water or whatever) in on top then blow on the face to cause a swallow. I would then soothe and nurse immediately. I know this sounds cruel, and it certainly isn't the kindest way, but if no liquid form was available, knowing what i do (first hand from adult hypothyroidism and in reading about paediatric hypothyroidism) i would regard it as a necessary evil - child diabetics hate their injections, but it's too important to muck about with.

Hopefully your endo will be able to answer all of these questions. I too am a big supporter of the PKU test for this reason. Huge to you, i know how daunted i felt when I was dx, i can't imagine having to deal with caring for a similarly affected newborn.
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#24 of 38 Old 01-20-2010, 01:33 PM
 
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Hugs Mama! I have no advice for you, but I just wanted to say again that your baby is so fortunate to have such loving and dedicated parents. Definitely take care of yourself, too! You are doing a terrific job of mothering your baby, but don't forget to look after your own needs, they are just as legitimate as your baby's.
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#25 of 38 Old 01-20-2010, 04:15 PM
 
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Quote:
Originally Posted by GoBecGo View Post
Talk to your endo about it. Is he a specific paediatric endocrinologist?

I have Hashi's, and take levothyroxine every day. These are the guidelines for MY meds (which may well be different for a baby, but you need to explore it all i think since i don't know what form you've been given).

It must be taken on an empty stomach (the pill is supposed to get to the small intestine without being "digested" in the stomach for optimum absorption - washing it down with water upon waking and at least 30mins before food is how they advise adults/younger people to do it, but this is obviously not possible with a baby).
It must absolutely not be taken with a vitamin pill, an iron pill or anything with calcium in it (including milk) because it binds with some other minerals and will not get into the blood properly if that happens.
It should not be chewed, powdered or broken unless to adjust dose (25mcgm is the smallest pill readily available for adults, this will not be the case for newborns) - i'm not sure why.

As a person with hypothyroidism who has been on this medication for years i would give it to my newborn as i would a cat - i.e. i would put it far back on the tongue and then squirt a little liquid (of whatever sort was deemed ok - breastmilk or water or whatever) in on top then blow on the face to cause a swallow. I would then soothe and nurse immediately. I know this sounds cruel, and it certainly isn't the kindest way, but if no liquid form was available, knowing what i do (first hand from adult hypothyroidism and in reading about paediatric hypothyroidism) i would regard it as a necessary evil - child diabetics hate their injections, but it's too important to muck about with.

Hopefully your endo will be able to answer all of these questions. I too am a big supporter of the PKU test for this reason. Huge to you, i know how daunted i felt when I was dx, i can't imagine having to deal with caring for a similarly affected newborn.
I too wondered about giving it to her like you would a cat. That was my first thought actually because with crushing it you may potentially lose some of the pill as well as lose some of its effects.

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#26 of 38 Old 01-20-2010, 05:05 PM
 
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My cancerous thyroid was removed a couple of years ago and I've been on Levoxyl since then. GoBecGo mentioned good guidelines, but mine are different:
1. Take first thing in the morning with one glass of water
2. Do not eat or drink anything for one hour
3. Do not take ANY other medication within four hours (in either direction)

Honestly, I would call the Pharmacist and ask the protocol for an infant on your specific brand. That person should have access to a Q&A database (I've seen them access it) to determine how breastmilk might alter the medication. Then find out who can provide a liquid form for you.

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#27 of 38 Old 01-20-2010, 05:11 PM
 
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Would something like this work? I've seen them before and it seems like it could work? Maybe?
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#28 of 38 Old 01-20-2010, 07:23 PM
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I'd crush it between two dessert spoons and mix it with a teaspoon or so of water and give it that way. Either with a dropper or just straight off the spoon.

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#29 of 38 Old 01-20-2010, 07:46 PM
 
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Did the pharmacist give the ok to crush it? it can be dangerous to crush some types of med as they are absorbed at the wrong rate. Hope all goes well with treatment and they can prescribe something easier for the baby to take.
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#30 of 38 Old 01-20-2010, 07:50 PM
 
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I think a medicine syringe with a plunger may work better for you than a dropper where you squeeze a bulb. Prevacid for babies comes as a tablet that you dissolve in a little bit of liquid. It disintegrates into little granules. When you pick it up at the pharmacy they give you a prevacid branded syringe that has a tip big enough for the granules to pass through. I'm thinking that's the sort of medicine syringe you need.

The Target and Walgreens pharmacies give out a very similar syringe whenever you pick up a liquid kids' medicine. If you don't have such a syringe already I suggest just going to one of those pharmacies and asking if they can give you one.

I do think tho that you absolutely need guidance from a pediatric endocrinologist on the ideal way to get this into your baby. I don't understand who prescribed this for your baby but they should not have just left you in the dark as to how to give it to her.

Good luck -- it sounds like you are trying very hard to take care of your precious girl.
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