update, made decision post 24

[lunamoth]

<<Welll, now that he is older and he is able to keep his levels steady I have been giving him a lot of extra. >>

Wait...you're giving him extra carnitine???

[tarah1218]

Originally Posted by Birbitt I said other, I think that since Carnitine is present in some foods that you eat I would avoid those foods and just take the supplement and try nursing him and see if it improves his discomfort, if not then maybe nursing isn't the best option for you and your baby. However since it is in things like dairy and red meat maybe you could try eliminating those things for a week or so and see if he improves? Just my two cents worth.

I already avoid the foods that contain carnitine. I am not "allowed" to eat pork or red meat because of fat content but I can have chicken or turkey once a week. I do not eat dairy at the moment because that is what was suspected to be bothering his tummy.

Originally Posted by MommaRhi mmmmm IMO a Dr should be able to tell you if the med is OK to take or not. Maybe try calling a lactation consultant to find out. What is an FOD?

She said she can't tell me if it's ok to nurse or not because there is no study done to see if the med. is safe. She said if something was to happen because she advised me to nurse while taking my meds or even if something happened because I didn't nurse and he does suffer from the same FOD but we are unaware, she would get in huge doodoo. My first son was symptomatic for over a year of his life so she able to tell me to nurse him because he did need the extra carnitine for medical reasons, my second son does not.

Originally Posted by Heather8183 Personally? No. Not if it's giving him labor like cramps. And add in that they don't know if it's safe or not... I know this is the "breastfeeding support" forum but there are times that it's ok to formula feed and I have to believe this is one of them. If what you are giving him is putting him in pain, it's not fair to him. Just my two cents. Hugs...it's hard to make these descisions for our LOs...

The comment about the pain he has been having is the reason I made the poll. Nobody will help guide me and I just hate to see him in this type of pain but I am so afraid to not nurse him and I wanted so badly to be able to nurse him and not supplement like I did with my son (He had to be taken off the breast and have a special formula mixed 50/50 and than had to relearn how to breastfeed around 6 months old when it was okay for him to nurse full time again).

Originally Posted by KaiyaSue I voted other. I guess if it was me, I'd try to find another, safer med and if that didnt' work I'd idealy switch to donor breastmilk. But I realize that is easier said than done. Tough call for sure. Good luck whatever you decide!

There is no other option for the med. There are only 2 brands made of this stuff. There is a generic and a Carnitor. They are exactly the same med but one is a little cheaper. So not many options for switching meds. I doubt I will be able to do donor milk. We are in Germany with the Army, if I knew of a way to get donor milk I would though, that would be the best situation.

Originally Posted by sillyutalktome Have you tried offering something else to be certain it's your milk bothering him? It would make me nervous breastfeeding with an unknown medication. But I would research and decide if I was comfortable with it. I think it's a personal choice. But if the medication is affecting him, no I would not continue to nurse. Could you try offering him formula while pumping to see if it alleviates the problem? I would hate to stop nursing only to find that it's colic or something else, not your milk. Also can you take less meds and be ok? Maybe that would help? Idk. good luck, I hope you quickly find what is best for your family.

My husband got online earlier and we talked about it and right now I am hand expressing half and than putting regular formula half that way the carnitine load is less. I am going to try this and see if tomorrow he is acting differently. I can't take less meds, if my husband wasn't deployed I would take that risk but I can't do it with me being the only adult in the home right now.

Originally Posted by lunamoth If I were sure it was the med causing the problem, I would try to get donated breastmilk...a lot of mamas say they would donate in the case of a medical problem such as yours. I looked into donating last time I was nursing because I had a TON of milk. Or even set up a contract to *buy* breastmilk. Lacking that, I would go ahead with formula (NOT SOY!). I would be concerned about the medication for sure, especially since it hasn't been tested. (they don't test meds on preg/nursing moms or infants...but things like my Zyrtec they have a record of people saying they have used it safely.) ~~~~~~~~ Good idea, previous poster, to pump and freeze while testing other things...

I contacted Deb, the leader of the FOD organization, and she said she didn't have any record of someone nursing while taking carnitor with an infant with normal levels. I was praying she did when I emailed her this morning but no such luck

[Pauli]

I voted yes. I would seriously do an elimination diet just to be super sure it is not something else causing him pain. I know how hard it is when your lo is in pain. My guy is dairy sensitive and I know it hurts him when I eat it. So, none at all for me. But if you come to a point where you just cannot do it anymore and nothing seems to be working, do NOT beat yourself up over it. Give him donor milk if you can get it or formula. We want happy healthy mommies and babies as well as well nourished.

Sorry *blush* I did not read all the posts.

[tarah1218]

Originally Posted by Ottbabies I would call an LC to check if this drug is listed in Dr. Hales Medications and Mother Milk and go from there. Is there an alternative drug you can use? I would exhaust my options before giving up but thats me and if your LO continues to suffer I would stop but try to get donor milk.

I contacted our LC for our area and she is doing some digging for me. She emailed me back last night asking if there was other option for meds and any other names and now I am just waiting.

Originally Posted by emilyeva DD had low carnitine levels at birth, so we were both tested and the issue was found to be with me not her. So I was given supplements (pills, Carnitor) to take and assured that there would be no issues with her (that, if anything, it would get her levels into normal normal and not low normal). I stopped taking them when I moved because, honestly, I am horrible at taking pills and with everything going on I just never remember to take them. So I have a stockpile of them and keep meaning to call and find out what I should do. I'm pregnant again and I'm not really willing to take them during pregnancy, since they don't have any information for me. It never caused any side effects for either of us, so maybe your doc is right and that's not what's causing DS issues. Maybe pump for a week and supplement (with formula) and see if he's still having issues...

Did they ever refer you out to get genetic screenings and to see a metabolic specialist? If you do suffer from Carnitine Transporter Defect or Primary Carnitine Deficiency you need to get a full work up! They will need to make sure you don't have an enlarged or failing heart/kidneys/liver. The Carnitor will help from those things occuring or even death occuring if you do get ill. You should also have an emergency protocol letter that needs to be carried around with you at all times in case something happens. I'll stop freaking out for you right now I just have been through the loop of getting half care until I found Dr. Regina and she put me straight. If you want more information or have questions please PM me. I took Carnitor throughout this pregnancy and Coen came out big and healthy. I didn't want to take it until something scarey occured due to my condition.

[tarah1218]

Originally Posted by lunamoth <<Welll, now that he is older and he is able to keep his levels steady I have been giving him a lot of extra. >> Wait...you're giving him extra carnitine???

Hahaha, no!!!!! No way would I give him extra through meds! He is getting extra through what is coming out of my breastmilk. What my body is "spitting out" comes out through my body fluids and "functions" (pooping, peeing, breastmilk, etc.)

[beautiful8]

I have no advice other than to say that I am ss you are going through this, I have breast hypoplasia and make hardly any milk at all and all my kids have had formula even though I am a huge BF'ing advocate. if you find throug this that you need to stop, don't feel bad. Formula is meant for things like this, so try not to feel too guilty if its what you have to do (((hugs)))

[baby1577]

No advice or opinions. Just

[momof3boys1girl]

I don't know mama but gl in whatever you decide.

[mommy21princess]

Okay I'm a HUGE breastfeeding supporter so here goes my take:

First off I too agree that Formual is for times that it's medicaly needed, I think if you can't make milk BECAUSE of HEALTH issues, (not because you don't nurse often enough, or got scared you didn't have enough and gave a bottle, yk I just don't buy all of those stories) I do think it's GREAT for ppl who CANT pump and do both or for those who need it for medical reasons!!

anyway I think at this time I'd DEF. continue nursing. I'd go on a STRICT BRAT diet and slowly add in other foods. He's only 3 months, right?? Maybe I read that wrong, if so though he could just be allergic to things your eating. It can take WEEKS to get dairy out of your system before it gets out of his and doesn't make him hurt. Also, do you know if it could be reflux? My first dd had BAD reflux and had to be put on meds for it. She projectile vomitted and she cried A LOT, it was hard on all of us. At the time NO one told me to take dairy out of my diet so I'm sure I wasn't helping it.
My second was a bad spitter upper! LOL She did it all the time, lots too not just a little here and there but she wasn't in pain. I think that's the difference.

I hope you get some answers and I hope that you can continue to nurse your baby, I think we all agree for those who have done it, it's a VERY special gift to give our children, I just wish more ppl would choose to try as hard as you and others have!! GL momma (hugs))

Oh...have you tried gripe water for belly aches or even gas relievers to see if that helps any? Also, do you know how much is actually given out through your milk? Most things even alcohol don't really excrete much after going through your system, so how much is he actually getting from you. I guess that's the biggest question. Maybe they could test your bm to see what kind of levels are in it. That can be done but I'd say you'd have to find a special lab that does it.

[marahbelle]

I looked it up in my copy of Hale's Medication and Mothers Milk, and there is no listing for it in there. Talk to your pediatrician... they should be able to give you more info.