Home › Forums › Infant Reflux Support › HELP!!! › 5 months old getting worse!!!
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July 7, 2008 at 3:25 pm #53480
Anonymous
InactiveI’m new here and am hoping to get some help if not answers! 🙂
My daughter, Averi, was born in January and was breastfed for about the first 2 weeks. During this time she was also being supplemented at night feedings. No problems! After that we switched her solely to formula(nestle good start). She was on this about a week when I noticed a difference in her temperment. She also wasn’t pooping and so I made an appt. w/her Ped. At that appt. the Ped. had us switch her to Soy. All this did was make her even more fussy and still not pooping like normal. After a week of that we were switched to Nutramigen. She seemed to get better and began pooping(quite frequently). After a week of this she began having blood in her stool. So, another appt., the Ped. said she had a milk protein allergy and to try Alimentum.
So, once she began Alimentum she was about a month old. She was eating like a champ – 4oz every 2-3hours(if not more), burping beautifully, sleeping well, pooping daily. NO PROBLEMS!!! She was a happy baby once again.
Than came the shots. At 2 months old she had her vaccines and that EXACT day I noticed a difference in my baby girl. She began refusing feeds (20oz/day), spitting up her entire bottle-sometimes 2 hours AFTER, extremely fussy, arching her back, not pooping AGAIN. Just a completely different baby. So, finally her 4 month check-up. The Ped. suggested giving her ZANTAC b/c she thought Averi had esophagitis and to go ahead and thicken every other feed. Well, as you all could have guessed, that didn’t help not one bit. She was just getting worse. She pretty much stopped the spitting up(probably due to the thickened feeds) but she was eating even less now-10oz A DAY! So, I scheduled another appt. w/the Ped. and she went ahead and switched her to Prilosec (3.5mL/ once in the morning). She also, THANK GOODNESS, put in a referral to a GI specialist. Almost IMMEDIATLY I noticed my Averi happy again. She was eating up a storm (30oz/day), sleeping beautifully, pooping normally. Just a peaceful baby! Then, after almost 2 weeks, she’s WORSE than before. She woke up the other morning and started refusing feeds, spitting up a little more, and now NOT sleeping. The NOT sleeping part is making me wonder if something is getting worse with her b/c she has always been a decent sleeper. Now I’m lucky if I get 1 1/2hours out of her. She used to nap for 2-3hrs every 2 during the day and sleep anywhere from 3 1/2-10hrs a night. I called the Ped. office today to ask if her medication can be either increased or if she can have more doses throughout the day. I’m still waiting on a call back. Hoping to get an answer soon. I don’t want to hear Averi cry all night again. It’s the worst feeling when you can’t do anything to make your baby feel better.
Averi’s GI appt. is scheduled for the 29th of July. So, I’m praying that the GI spec. can figure out what all is going on with my little girl. Please, if anyone has any suggestions as to what I should do or what might be going on with my baby girl, I’d appreciate it!!!
July 7, 2008 at 3:34 pm #53484hellbennt
Keymasterok I have a LOt to say!
no time to say it, LOL!!!1) the dose is most likely not high enough2) since it’s prilosec, take a look at marci-kids about ZEGERID.very stable. I’d guess your compound, aside from not being a high enough dose, is not good after 2 weeks, IF THAT.3) get diaper checked for blood again. if there is some, it seems as though Neocate or Elecare is the next step4) look here!!!!! Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=15) do you have zantac? figure the dose at 10mgs per kilo and give that as well, making sure to give it 4hrs seperate from the prilosecZantac dosing- my/other’s question: https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#829146) try probiotics? Probiotics, brands used: https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=17) read read read. ADVOCATE for your baby, just like you’re doing!8) WELCOME! gotta goooooooooooooJuly 7, 2008 at 4:37 pm #53492InactiveI agree! I just got off the phone w/her Ped. and she’s hesitant to increase her dose. She said to split up her 3.5mL once a day to 1.75mL twice a day. I know that this isn’t enough! The *marci-kids* website is saying that she should get the 3.5mL THREE times a day. The Ped. said to give until Thurs. and if there isn’t a change that there is one more thing to do. What that is? I don’t know. I think she’s just waiting for the GI to handle this.
She hasn’t been having any problems with her stool. She’s been going like usual, once a day. I haven’t noticed any blood in there either. I hope this stays normal and doesn’t change here again!
No, I don’t have the Zantac anymore. It wasn’t working and she started doing a weird grunting noise after taking it. So, we along w/her Ped. decided to stop it. Who knows, the grunting could have just been a coincidence. That’s the way a lot of things seem to be…
Haven’t tried probiotics. Is this something that I should get approved by the Doc. first? Are there possible adverse side effects? My daughter seems to have a really sensitive stomach and I don’t want to irritate it any further. Even mylicon drops hurt her tummy, for some reason.
I’ve been reading as much as I can come across and some stuff helps, but other stuff is so confusing to me. I just hope we get a really good GI and that he’s willing to do what it takes to make my Averi better.
Thanks for the all the info!!!July 7, 2008 at 5:10 pm #53497InactiveYou might get a diaper for a stool sample anyway. I could not for the life of me figure my son out when he was smaller. The Prevacid didn’t seem to be working. His stools were normal color, consistency and he went once a day like always. There was no noticeable blood in his stool either.
One of the first things his ped GI did when we finally got into see him was a fecal hemoccult test. This test checks the stool for microscopic blood. Sure enough, the test was positive. He has been on Elecare (an elemental formula that is amino acid based) ever since. We do not have feeding problems anymore.The test is super easy and fast. Here is a link to find a ped GI in your area: http://www.naspghan.org/aspModules/PublicLocateDoctor/PublicLocateDoctor.aspkdub2008-07-07 17:11:54
July 8, 2008 at 7:53 am #53530InactiveI’ll be sure to have the GI test her stool then. I already know she has an allergy to the milk protein so maybe w/there still being traces of it in the Alimentum it’s causing her to have problems.
Did your son also stay on reflux meds once the formula was switched? I can’t wait for Averi’s appt. to get here. She did a little better last night. So, I’m hoping that splitting up her dose of prilosec will help in the meantime!
July 8, 2008 at 11:23 am #53538InactiveHi there and welcome. A couple of things…First, there are many moms here whos babies still tested positive for the blood in the stool on Nutramigen and Allimentum. I am one of them, all 3 of my boys had to be on Neocate. Doing the stool test mentioned above will help determine this. Even if it doesn’t test positive it may be worth trying the Neocate. You can buy some online…it’s spendy though and you may still need a scrip..jsut ask your ped. Second, I am a HUGE believer in Probiotics. Like I said, all 3 of my boys couldn’t tolerate anything, including prevacid solutabs, mylacon drops, or infant tylonel. Nor could they tolerate most probiotics. Probiotics will say they are dairy/soy free when in fact most contain traces of wither soy or milk. They one we use that is completely free of major allergens is called Infant Formula and is made by Klaire labs. I give 2 full doses to my 4 month old baby daily and am ecstatic to say it has beat a C-Diff infection that 5 courses of anti-biotics couldn’t kick. There are sooo many benefits to pro-biotics…..it’s crazy the medical community in general aren’t telling everyone about them. My Ped GI puts babies on probiotics all the time. There are really safe. Lastly, it sounds like when her reflux meds are increased or changed, things improve right? I would go to the Marci-kids site and print off the info on PPI’s, including the dosing as well as the page that lists the doctors that back Marci-Kids and their contact info and take this into your doctor so they can see it is safe to give her more of the Prilosec, or maybe even better, change it Zegerid. This way, maybe you won’t have to wait until the GI to find some relief for your baby. Good luck.
July 8, 2008 at 11:45 am #53539InactiveYes, my ds is still on reflux meds (Prevacid). We also use the probiotics that the previous poster uses. The ones by Klaire labs are very good quality and potency.
Many insurances will cover the cost of elemental formulas. Mine does under the medical food part of our policy. We had to have a physicians prescription and it had to be pre-authorized. WIC also covers Neocate with a script. Many insurances do not cover them, sadly. You can fight fight fight for your insurance to cover Neocate. Here are some great examples:July 8, 2008 at 2:21 pm #53551InactiveThanks So Much For The Info…I’m really starting to wonder if Averi’s problem all along has been the MSPI. She showed her first signs of blood in her stool while on Nutramigen. So, if it’s similar to Alimentum(as I’ve read), then maybe it’s just affecting her “quietly” (i.e. no visible blood). Although, she has VERY VERY foul smelling stool. Also a sign of allergy from what I’ve come across.
When she first started on Alimentum she was eating a TON and so maybe by the time she was 2 months old that’s when it hit her. B/c everything I’ve been reading says how the protein can continue to build up over time. She was on the Alimentum for a month when she began displaying all of her reflux symptoms. AND Now I’m also concerned b/c the GERBER cereal I was told to thicken her bottles with contains SOY. So, if my poor baby has been being pumped full of all these milk & soy proteins (which she’s allergic to) no wonder she’s in so much pain and displaying so many signs of reflux and just continuing to get worse no matter what meds she’s put on.I’m definitely gonna ask her Ped. on Thurs. about all this and see if we can get her formula switched and try the zegerid (since it seems to have longer shelf life). Hopefully, this will help her for now until we get to see the GI. Does anyone know if your Ped. can have stool samples tested or does it have to be by the GI? I’d really like to know difinitively if there are traces of blood asap instead of waiting for the GI.THANK YOU ALL AGAIN! You have really brought a lot of GREAT info my way!
July 8, 2008 at 2:25 pm #53552InactiveOur ped office tests stool samples but I don’t know if they all do. It literally takes 2 seconds. We do hemoccult tests w/ every diaper for our little guy right now b/c we are in the thick of things trying to figure things out. Very easy… (dh works w/ medical supplies so easy for us to get).
July 8, 2008 at 8:33 pm #53582InactiveOkay here is my 2 cents and I haven’t read everyone’s reply so forgive me if I repeat them. Why the heck would she change you from Nutramigen to Alimentum if there was blood in her stool. They are the same darn formula just made by different companies… And they both have milk proteins still in them and some MSPI babies can’t handle them. Also why was she changing the formulas every week… it takes up to 2 wks to see a good difference. And I would get her stool checked again b/c there may be microscopic blood that you can’t see and what would explain the problems.. then you would need either elecare or neocate. And I would stop thickening her feeds b/c most babies don’t do well with the cereals b/c they are so hard on the tummy and if she has MSPI and needs the elecare/neocate the cereal could really be making matters so much worse in her tummy. Again sorry if I repeated anything anyone said.. but if I did then you at least know that something must be right. Glad you found us.
July 9, 2008 at 10:06 am #53594InactiveCooper’s Mom~
I agree w/you 100%!!! The more research I’ve been doing the more I can’t believe the Ped. suggested Alimentum when she reacted to the Nutramigen the way she did(blood in stool). I wish I would have been more educated on the matter back then b/c I really think my DD would be in a much better place right now if she had been switched to either Neocate or Elecare. I feel so strongly that she’s still exhibiting signs of the MSPI w/the Alimentum that I called the Ped. Office first thing this morning and got an appt. for this afternoon. I’ve printed off some info about Zegerid to take as well in hopes that the Ped. will switch her meds too. The prilosec just isn’t working. Plus, the Ped. is not comfortable upping her dose on that anyways, so we need to do something different! I’m also hoping to take in a stool sample and have them test it for traces of blood. Whether it comes back positive or not I still want to switch formulas. I know that some Moms have said that it took a couple samples before the blood showed up…So…I’m not taking “NO” for an answer and I really have high hopes that my daughters Ped. will be willing to make these changes. She has really been an understanding Ped. so I think she’s willing to work with me to resolve Averi’s issues. I just hope it’s not too late!
I’ll let everyone know how the appt. goes!!!
July 11, 2008 at 8:00 am #53723InactiveThe appt. went alright. The Ped. switched her to Elecare. So, it’s gonna be a few days before we’re able to get any. Also, I have to call Monday to see if it’s gonna be covered by our insurance. I know once Averi sees the GI that it will be, just not sure if it’ll be in the mean time. The Ped. wouldn’t switch her to Zegerid. She had never heard of it and even with looking at the info. I printed didn’t feel comfortable doing it. So, she atleast upped Averi’s dose of prilosec. She was going to switch her to prevacid, but that has to be taken atleast 30 min. before eating. That won’t work b/c the only way to get Averi to take it is to put it in her mouth when she’s eating her bottle. She’ll even spit that out at times. I also took in a stool sample and we’re waiting on the results of that. Also, I switched her to the Beechnut cereal b/c it’s soy free. I never would have realized that if not for this forum! My Ped. didn’t know that either!!! Anyways…I’m just hoping that we’re making a move in the right direction and we get a handle on all of this soon!.
July 11, 2008 at 8:04 am #53724KeymasterI would get caracream, then. look for purple post for explanation- the rest of the thread tells you how to get it, etc. Caracream: https://www.infantreflux.org/forum/forum_posts.asp?TID=11191&PID=94236#94236
and I would look into another ped?
July 12, 2008 at 11:06 am #53778InactiveI could only switch Ped. in the office we go to. I’ve definitely considered doing this. The Ped. my DD has been seeing admitted to me that she hasn’t had a case like hers and that she’s not as knowledgable. So, like I’ve said before, she’s hoping the GI is the answer.
On a better note…Averi seems to be doing better these last couple of days. We’ve increased her prilosec to 2.5mL 2x a day. It seems to be helping a little, she’s sleeping better. 🙂 That’s always a plus! We’ll get her started on Elecare on Monday. So, I’m looking forward to that.
Has anyone had problems w/their LO’s not taking to the Elecare right away? I’ve read plenty of ppl saying that you need to transition to the Neocate a little at a time. So, is the Elecare the same way? I guess it also depends on if Averi will take it right away or not.We’re still waiting on a call back about her stool sample. This probably sounds horrible, but I’m hoping it’s positive for blood. It’ll make me feel like we’re taking steps in the right direction I guess. Plus, it’d be nice to let the Ped. know that she is in fact still showing signs of MSPI!!!I’m a little bugged by the Ped. If she wasn’t that knowledgable why didn’t she suggest we see someone else in the office who was?! Anyways…The Ped. GI appt. is in 2 1/2 weeks. So, here’s hoping the change in formula and increase in meds helps Averi while we wait!July 12, 2008 at 11:18 am #53779InactiveWhy are they making you wait so long for the stool sample results? That is something that only takes a second to check. They should have the results as soon as you take in the sample. If I were you, I would call and demand the results. They shouldn’t make you wait on that.
I know what you mean about wanting the sample to show blood b/c then you have some answers and some direction for making changes. I think it gives you a sense of hope that things can get better when you know what is wrong and have steps to take to make changes. How many stool samples did you take? When I took 3-only 1 showed blood so you may want to have several checked. I assume the Elecare is similar to Neocate. I know some recommend switching slowly which makes sense. I didn’t know this and switched completely. My DS took it w/o any problems but he has always been a good eater. He has been on Neocate for about 1 month now and he is really doing better. Don’t be discouraged (easier said than done) if you don’t see immediate results. I know it’s hard b/c I too was discouraged but do give it some time.
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