Quick recap (I always try to make it quick but there seems to be too much to update on:)
1. We found blood in Quinn's stool last weekend. This meant that most likely Quinn has an allergy, most likely Milk Protein Allergy. I had given him about 6 ounces of my breast milk (milk that was frozen last, and was primarily dairy free from my diet), as I felt he was getting sick (coughing, cranky) and lo and behold screaming Quinn came back again. He became inconsolable. I guess I just couldn't admit to myself that my 2,500 ounces of breast milk were pumped for nothing (yes, please don't suggest that I donate it, as of course I will) but you can't even understand the pain that I went through as my breasts don't take very kindly to the breast pump. I made this sacrifice to give my son the best he can get, and now I have to admit that he's allergic to my milk due to my ingestion of milk.
2. I once again implored to my doctors that I wanted to see another GI specialist as this was becoming ridiculous. Our Gi had only asked for 1 stool test, even though I kept insisting that the reflux meds weren't working, he was still very uncomfortable. I think my biggest frustration was that I was once again (as I had to do with Kaitlyn) try to figure out what was wrong with my child. Aren't doctors supposed to do that???
I had a crying unhappy baby that was still eating every hour (at 7 months old) at night, was no where near sleeping through the night, he was refusing solids (which was freaking me out due to my experience with Kaitlyn and I was just trying to not let it freak me out) I just couldn't take it any more. he was clearly not happy, although he was better on the Nutramagen, he wasn't the "new" baby that so many of you spoke about once going on Nutramagen.
3. So it was time to put Quinn on an elemental formula after 2 positive blood in the stool tests. I really didn't want to go this route, but of course I've known we've eliminated all other options. I also made the decision to try to wean him from his hourly eating all night long and do some sleep training, and try to get him more on a schedule. That's been tough to do as he never ate more than about 4 -5 ounces at a time.
Well fast forward after a horrific week, I mean really horrific. He cried so much he became horse. Here I had a daughter who is terrified of loud noises (so she cried all the time too) and a son who screamed for hours at a time for about 4 days straight. Oh my. What a fun week I had.
BUT, I think I can now say, that Quinn must have a Milk Protein allergy, because, knock-on-wood he's doing so much better. I think that I might even have the "new" baby that other moms spoke about after getting their babies onto new formulas.
I'm a bit hesitant to actually say so, as I don't honestly believe he could actually be so much better, (give me another week to see if it's still the case, then I'll be a believer), but really, he's finally this happy little guy that came out on occasion before. It's really amazing. Really.
Quinn is now on Nutramagen AA (Amino Acid) which is an elemental formula, dairy free. After the weaning few days, he's now taking 6 ounces at a time (not every time, but at least 2 feeds a day he's taking in 6 at one sitting). He's spitting up more, but it seems to be a happy spit-up, there's no fuss with it at all. (Guess I'll have to still try to figure that one out). (anyone have any ideas on the increased spitting up, I'm open to suggestions!)
Wonder if he never had reflux at all? Of course want to wean him off prevacid then zantac to see if that's the case, but I'll hold off a bit before doing that.
He's now sleeping longer, I'm only having to feed him 2x at night, and I'm in the process of eliminating 1/2 an ounce /day at each of those two feeds. He's not in our bedroom any more, so last night was the first night that Brian slept in our bed together in I don't know how many months.
Maybe babies aren't that bad after all. I really could never figure out why some moms loved the baby stage so much. I have to honestly say (again I feel like a horrible mother here) but I've not had a very easy run with the baby stage. Kaitlyn was obviously not easy (that's an understatement) and Quinn has been really difficult too. I kept saying to myself that I couldn't complain, as he ate (somewhat) and he didn't vomit all the time, but I have to say, he cried, a LOT which was actually even more than Kaitlyn ever cried.
16 comments:
the only thing i know to do with spit-up is just to not lay him down at all for an hour. Keep him upright. It worked for my daughter but you may be doing thid already. GOOD LUCK! :)
Hi Liz,
Glad to know you figured out Quinn's problem.You are a very smart mom and your children are lucky to have you as their mom.How many hours apart you have been feeding Quinn?May be in his next feeding he still has milk left from his previous feeding so he is spitting up.It's just a thought.My children vomited all the time so I did every possible thing I could do.
It's good idea to make him seat at least 30 minutes after his feeding.
Glad to know he is a happy baby.
So glad to hear that Quinn's issues are starting to resolve! He is such a cutie, as is his big sister =).
Hi Liz,
Glad you found out. It seemed many of your readers had a hint that was the cause too; it looks like many of us went through that. US pediatricians seem in many cases to underestimate milk allergy, or I don't know why they don't listen to us. (Pediatrician reader, anyone?) When my daughter was screaming her lungs out at night, I could simply not get it through her pediatrician that it was not a normal kind of cry. He assumed that because I was a first timer I would be exaggerating. I think that also baby books should emphasize the problem a little bit more, so that moms can start a dairy free diet BEFORE they kill themselves with pumping! Finally, as someone who knows how it feels, I am so very, very impressed with your pumping!
I never even knew that there was a Nutramigen AA -- how can proteins be more fully broken down than "fully broken down proteins"? Does anyone know about this?
Liz has anyone ever suggested Similac Alimentum? Through family members I have had experience with milk allergies and reflux. This formula was suggested in both situations. There was some vomiting even when on the formula. It wasn't that frequent; but it was a little heavier than just baby spit up. It seemed to help by stopping to burp frequently throughout a feeding. Also, this formula was covered by insurance, you can even arrange to have it shipped right to your front door. Good luck, i hope this helped.
Hmm. Allimentum is just like Nutramagen, they are both made with broken down Milk proteins. I mainly tried Nutramagen (and Quinn improved), I tried 1 bottle of Allimentum RTF (Ready to feed, as it's also the only formula that is corn free). But, after Quinn had blood in his stool (a sure sign of milk protein allergy) it was time to move on to an elemental formula.
Elemental formulas (Elecare, Neocate and Nutramagen AA) are totally different formulas, They are Amino Acid based (no milk or soy proteins what so ever).
Hope that all makes sense.
Hello Liz,
Good luck with your baby!I have one question about Kaitlyn that I have been thinking a lot lately after I talked to my friend.My friend's daughter was diagnosed with pdd-nos but her teachers and parents think it's good for her to go to regular preschool not the special school because she will learn much better with typical kids.She is 3 years old and she has some major issues which are noticeable.From Kaitlyn's video and your blog I know how bright and gifted Kaitlyn is.Kaitlyn has little issues but mostly she behaves very normal.You are very smart mom and you know your daughter the best but it bothers me to think why she can't be in the regular school?I know the kids get special care from the teacher in special school but how about the peer interaction in special school?Is there any reason for you to send her to special school?Can't they be addressed in the regular school with typical kids?I have been reading your blog so long so feel like to ask you because she is so intelligent!You mentioned about short bus but the kids with some issues are going to regular preschool and Kaitlyn has no diagnosis but she is in special school!It's surprises me!
Thank you.
Kathy.
Kathy,
There are many reasons Kaitlyn is in Special Education.
1. at the age of 3, children don't interact that much with their peers (or at least my daughter doesn't). That's one of her issues. In her preschool she was happy as a clam to just play by herself all day long, and that's not going to help her at all.
2. We plan of course that Kaitlyn will attend regular school. Any help that she can get at this time so she won't get lost in the crowds of regular school when she's older will only help her.
3. She's in a very high-functioning class. and no she doesn't have a specific "label" at this point, but many do notice that she is different in many ways (I had a whole post on this subject, as I think she differs in ways that are very specific to early preemies). She does have sensory processing disorder too.
4. hmm, i know there are other reasons too, but it's 11:30pm and i've got to get a few hours sleep until the little guy wakes up.
Hi Liz.
Since the previous commenter has asked...One of the reasons I am also interested in your blog is not only because I am a mom, but also because my very best friend's son was diagnosed with pdd-nos and sensory issues. This was recent and my friends are very distressed. They are considering a special education school as opposed to the preschool where he goes now, in which they may add a special teacher for their son only. I was wondering if you could give me some information on good online resources for this, and if you there is a space online for moms of pdd-nos sid children to share this information.Thanks in any case.
you should check out yahoo groups. there are tons and tons of groups for parents with autism, including pdd/nos. i don't know where you live but here in the bay area alone, there are at least 5 or 6 online (yahoo groups) that I am aware of and that's only in the bay area. Wish your friend the best.
Liz now you have me curious, i had commented previous about allimentum. After your explanation (that makes perfect sense) I am wondering why they put my nephew on is as opposed to an elemental formula. At 4 weeks old he had blood and mucus like poop (sorry for the description). There are known milk allergies in the family so that is why he ended up on the allimentum. It seems to be helping, but he still has some projectile vomiting. I mean he gets distance, literally over a foot and has emptied full feeds. Yet, he is still gaining weight so the doc. was not too concerned as it has only been 2 weeks and he could possibly still be adjusting to formula change. But ill suggest that they ask the doc about elemental formulas.
Thanks for the insight!
-D
My son anthony (26 weeker) came home from the nicu having bad reflux. He was actually having apnea from it. he was put on allimentum. but that alone didn't stop it. our lung dr was actually the one that put an end to his reflux. i guess because reflux does effect the lungs so he's familiar with it. He told me to put rice in anthony's bottles. And not a little. his bottles looked like the consistancy of pancake batter. We had to get the cereal nipples and stretch them. but OMG what a difference. he hardly ever spit up again and if he did it was just a tiny bit. he just needed something heavier in his stomach so it wouldn't come up so easy. also the dr recommended florstor. its acidopholous in powder form that you put in a bottle once a day. I really believe it was because of these 2 things that his reflux never bugged him again and also why he was never colic.
I hope Quinn feels better and that mommy gets some much needed rest!
I also wanted to say i've read your blog for quiet awhile and really enjoy it. I also lost anthony's twin sister, hailey. she died at 20 weeks gestation and i delivered her 4 days before i had anthony. i miss her every day...
Kim
Liz, I wouldn't mess with it if it is working, but we had protein allergy (different than a true dairy allergy - Sarah can now drink milk with no problem), and we had no true success until we went on Neocate (which is incredibly expensive and has to be ordered.) But EVERYTHING stopped after we put her on it. The vomiting (which didn't stop even after her fundoplication), the moaning and crying at feedings, and the major intense aversion. She began eating baby food the next week. Now I am not saying she is a great eater, she is not - we have had years of not so great eating, but our major eating issues ended with Neocate. Just in case you need another idea.
Shellie (Sarah and Rebecca's mom)
We are on Elecare which is just a different brand of elemental formula. The spit up increases because generally the elemental amino acid formulas are MUCH thinner causing them to slip past the LES much more easily. As long as it's not bothering him, I wouldn't sweat it, it's probably just a laundry issue. It's very common with these AA formulas. I'm so glad he is doing better!!
I am so sorry to hear about what you have been dealing with with Quinn! My 6 month old is MSPI, and it has been a huge challenge for me, as I am still nursing. I feel(a little) your pain with the milk in storage. I had pumped about 400 oz before we realized what was going on, and had to donate that.
Something I wanted to suggest. I have discovered that soy has a much more "esophogeal" response as an allergy. We thought dd was refluxing, but it was the soy intolerance that was causing the problems. Once I eliminated soy, the reflux issues stopped. Good Luck, Lesli
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