At My Wit's End Too

[Anonymous]

This is long. I’m sorry, but I need help. When my son was newborn we had to spend a few extra days in the hospital because he was either sleeping or screaming and wouldn’t BF.

When I brought him home he was still very irritable at feedings. I tried pumping and bottlefeeding so I could keep him upright, kept him upright after feedings, propped his bed, and it didn’t help. The Dr did an ultrasound to rule out pyloric stenosis, and said Alex wasn’t projectile vomiting enough and was gaining weight too well to have reflux. He basically said Alex is colicky and sensitive and that’s that.

Alex has always been irritable about food – as in, he goes from calm and quiet to screaming to be fed immediately. He wakes up crying from naps and in the morning, and he wakes up crying throughout the night. He acts like he’s dying from starvation, has a few sips, then he’s off again. He has always sipped throughout the day – even though he turns 9 months old in eight days, he still almost never takes more then 4oz at a time. If I use anything but a stage 1 nipple (meant for babies 0-3 months) he just drools most of his bottle. He tends to choke on his formula. He often sounds like he needs to clear his throat, or as if he has a cold when he’s breathing. The Dr told me some babies are just like that.

I tried him on cereal at 4 months and veggies at 6. I had been feeding him up to 1/3 of a jar at a time, otherwise he was irritable afterwards. He will wake up screaming after I lay him down for a nap, be cranky and crying as if in pain for hours. Recently I talked to other mom’s and found out their 9 month olds are taking 1/2 to a whole jar of baby food a few times a day – they are doing fruits and meats and stage 2 and 3 foods. We are still trying to make it through stage 1 veggies – fruits make him even worse no matter how much I give, same with cereals with fruits. Let alone stage 2 or 3 foods or meats!

We just moved an hour away from our family Dr and I’ve been looking for a new one. So I went to the clinic for myself yesterday and decided to ask the clinic Dr to take a look at Alex. Well, he’s only gained 1/2 a lb since his 6 month visit!! And she agreed he really should be eating solid foods well by now. She told us to go to our family Dr and have him send us with the growth charts to a GI specialist.

I was raised not to argue with Dr’s. And the family Dr made me feel like I was a paranoid mommy and should just get used to my colicky baby. But the nurse yesterday looked at me like I had two heads when I admitted I hadn’t taken him to the family Dr about this recently. Only the clinic Dr reassured me and made me feel like I knew what I was talking about. Now I’m upset – it seems like there was something wrong all along.

Does this seem like reflux? Or are these symptoms other then the weight loss normal for babies? The clinic Dr believed me but I’m afraid the family Dr will make me feel like an idiot again. I don’t know what’s normal and if the symptoms I posted above are something I should write down for the GI specialist.

Please help me, I don’t want my son to go through more months of “colic” when it’s really reflux or something else.

EricaRain2007-11-16 13:02:15

[Anonymous]

Just posting the above made me feel better and I wrote it all down in a notebook for the Dr.

I also took a look over at https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1 and made notes.

When breastfeeding I tried eliminating dairy & caffeine for 3 weeks and it didn’t help. I tried to prevent “overactive let-down” as well and it didn’t help. I switched him to formula at 4 months – we’d been sharing a yeast infection since he was 2 months old, he was nursing 20 minutes of every hour throughout the day, I had sores chewed all around both nipples, and I realized both of us were crying every hour with nursing – him to start, and me praying he wouldn’t want to “snack” every hour because it felt like he was chewing glass through me everytime he started nursing.

Thank you that give me some more notes to make for the GI specialist.

Right now it’s the solids that are really causing the most problems.

[Anonymous]

I would just flat out say yes, he sounds like he needs medicine badly. Not taking more than a few bites of stage one food at his age is not normal. The choking, crying and BF’ing, and congested sounding problems are ones you will see all over this forum. COLIC is for the birds, the word makes me irate!

I would ask your family doc and if you get nowhere– you need a new doc b/c after going through this for this long he probably has it so bad you are going to need a good dose of something to make him want to eat. I would try to get Prevacid solutabs if doc will give it to you–compounded meds don’t work well b/c they become unstable and he sounds miserable so if your doc suggests Zantac most likely that won’t be strong enough. I would say no– please give me Prevacid!

If you do get him on Prevacid, it is to be given on an empty stomach and then he should eat a “full” meal 45-60 min later. It takes some practice to get a routine down but it will make the meds most effective.

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

Go to this link, it’s by a woman named Laura who is great and has compiled a lot of info on almost any reflux topic you could need. She has links to meds, formulas, feedings etc and you should be well read up before you go to doc and ask for meds! Don’t back down!!

It takes about 2 weeks for Prevacid to kick in or any med for that reason so give it time if you do get meds, it won’t be miracles right away, but I saw a difference in about 3-5 days with my son.

Good luck to you!!!

[hellbennt]

I am so so so sorry you & baby have gone through this!

DITCH your family doctor and go back to the place where they understood your baby’s problems! or just go to a ped GI. you do not NEED your doctor to give you a referral do you? If you do, just DEMAND one. or, go back to the clinic & start over & get a referral from there telling them that family dr won’t give you a referral.

I would call the GI’s office and ask who they work with in terms of getting a swallow study. it’s a speech therapist, which sounds funny w/ infants/babies, but that’s who does these studies. they will look at HOW your baby sucks & swallows and if there are problems they will help. this is just ‘mechanical’ stuff – you still need a ped GI for medications, etc.

hang in there, you’ve ‘landed’ in a great place!

~laura

[Anonymous]

My son, who is now 14 months old, had the exact same issues that you listed at 9 months, from the not eating purees well to the screaming, the chronic cough/congestion, choking, etc….The doctors kept telling me it was cold on top of cold. Finally, I demanded a swallow study because I knew that was not the case. We had already gotten an upper GI done, which showed reflux immediately. So, they knew he had that. At 9 months, the swallow study showed aspiration (slight) on all liquids and thin purees (ie. stage 1 fruits and veggies). At that point, we were told to thicken his liquids with simply thick (honey consistency), and we were put on a higher dosage of prevacid. After that, the coughing/throat clearing completely went away! He didn’t have any coughing/wet sound until now (see my post from a few days ago). So, I would definitely recommend you getting into a GI specialist, and getting some tests run (upper GI and swallow study) to begin with. If you aren’t thickening the liquids, I would start now. That is the one thing that I didn’t do until 9 months, and I think it would have helped a lot. Anyway, good luck!!!

Keep us posted!

[Anonymous]

Hey! I’m so sorry that you’ve gone through this for so long with no support. I’m glad you have found this site. I agree with the other posters. Ditch the doc and look for someone who can support you and find some help for your son. It really sounds like reflux to me, so a PPI at a good dose will probably do wonders for him.

Check out http://www.marci-kids.com for current research and info on reflux medications. They recommend giving babies a fairly high dose (higher than most doctors want to go) because little ones metabolize the meds. so quickly. I would print out the info. and take it with you to a different doctor if you can.

I really hope you find some help soon. Let us know how it goes.

[Anonymous]

Thank you ladies, I have printed out reams for my Dr and also started a notebook, so far with 3 pages of symptoms. I’ve been doing research as to identifying reflux as well and notice one of the big factors is lack of weight gain, so at least I understand why my Dr was stuck on that. I also notice that my son’s symptoms often start an hour or more after he eats rather then right afterwards, which is another reason perhaps my Dr didn’t catch on. I really don’t know, he just doesn’t seem to be familiar with babies.

Anyway I am gathering everything I can to get him to refer us to a specialist on Tuesday. We just moved an hour away too and I want a referral to a pediatrician local to our new place.

[Anonymous]

Sorry, I haven’t read everything in detail today, but my pead put the symptoms not starting for about an hour or so down to MSPI rather than Reflux. Could this be an additional issue for your little one?

[Anonymous]

OMG, I could cry… just wrote you a HUGE response and computer deleted it… uggh!!!

summary:

1) check out marci-kids for information about PPI dosing and see if your doc will try a PPI

2) let us know where you’re located and maybe someone can recommend a good doc

3) don’t worry about comparing to other babies re: feeding. Many refluxers are slower to get accustomed to solids. If things don’t improve after being on a PPI for several weeks, then ask for a referral for a feeding evaluation/feeding therapy. They may be able to help.

4) Can MSPI be an issue?

5) You can ask for a referral to a ped dietician to address weight gain issues. there are things that can be added to formula to increase caloric content.

6) Not all refluxers spit up. My dd had silent reflux that was bad enough to cause esophagitis and a feeding aversion. A good dose of PPI followed by testing to rule out other causes and ultimately feeding therapy was what helped her the most.

Good luck.

[Anonymous]

Hello Ladies,

I’ve got the PPI sheet printed from marci-kids for the Dr, although I’m not sure if he will be willing to prescribe anything today since we want a referral to a specialist & pediatrician. I have it in my purse to talk about for sure. Ideally I would like a prescription for something like Prevacid and Zantac for immediate and longer-term relief, with a referral, but I honestly think this guy would have no idea what/how to prescribe and may or may not take the marci kids info seriously.

I’m in Waterloo, Ontario, Canada.

I’m not sure if it’s MSPI only because his symptoms aren’t too bad until he gets baby food. Then he is crying in pain. I am almost wondering if the problem going undiagnosed has caused damage that makes the solid food really horrible for him.

Our appointment is this afternoon, I will definitely post an update.

[Anonymous]

Oh, I just realized too, when I was BF’ing I eliminated dairy from my diet and it didn’t help. So I think that suggests no to the MSPI?

I dunno, I feel like I just have no idea how to make him feel better lately.

I’m beginning to wonder if I have postpartum depression or just totally frustrated with Alex’s pain.

EricaRain2007-11-20 11:04:24

[Anonymous]

Hi there, again!

Didn’t notice that you’re a fellow Canadian. I’m in Toronto, went to U of W for undergrad.

Here’s my advice for more immediate action.

Go to your child’s doctor (whoever it is, whether a GP, a ped, or whoever). Tell them the list of your child’s symptoms and that you think he has reflux and that you want to try a PPI. I personally wouldn’t spend the time with the zantac at this point. Only b/c there are feeding issues involved, best to go for what’s most likely to work. You can show him the marci-kids info. Tell him that you can’t wait until he refers you to a ped GI to get something done. Seems like standard practice here is to prescribe zantac, if that doesn’t work, losec, if that doesn’t work to do an upper GI and call it a day. Please don’t accept that. I know it’s hard to deal with, but we can help you through it on this site. If your ped won’t listen, then try a new doc. I know that Waterloo isn’t the biggest town, so I’m not sure how many options you have, but don’t give up. I don’t know any GI’s where you are. Sick kids hospital is only an hour or so away, but it takes very long to get in there. Regardless, I’d push for a good dose of PPI now. The prevacid fastabs are available in Canada and they work quite well if the dose if high enough and if they’re given correctly- on an empty stomach approx 30 minutes before a feeding. Alternately, CaraCream can be ordered directly from marci-kids and then you need the prevacid capsules and mix it yourself, and you don’t have to worry about timing meals. Also, you can call your local community care access centre (CCAC aka home care) and self refer your son. Tell them that you’re having trouble feeding him and that you need help- they take feeding problems very seriously. They’ll send a feeding therapist to your home to assess your son. We did this and it was very helpful. They also sent a dietician which helped as well. That’s a good starting point.

As I said, this can all be very overwhelming. If you feel that you have PPD then tell your doctor. If you’re just feeling run down, maybe a bit of a break away from the situation will help, if that’s an option to you.

[Anonymous]

I’m sorry things are so hard right now. I hope Lori’s suggestions help you to get some help for your son.

About the MSPI, it can take several weeks for your body (and his) to rid itself of milk or soy proteins, so it’s not necessarily a sure thing that he’s not MSPI since he did not improve when you eliminated dairy. It depends on how long you did it. Also, he could have been reacting to soy products which are really hard to eliminate because soy is in just about every packaged and processed food.

I hope things improve soon.

[Anonymous]

I am so sorry you have had to deal with this for so long. Like the other ladies have said about the MSPI you have to really do a total elimination diet to know for sure. You would have to make sure not to eat casein and whey which are in most packaged foods. Also soy is a big one too. If you did the Dr. Sears elimination diet then that is probably not the cause of his pain. Like another lady said the term colic irritates me too. It is a waste basket term that drs. use to say they have no idea what is wrong with your baby.

All that being said I hope you do find help for your baby. Please keep us updated because we def. want to help.

[Anonymous]

The Dr wants to do Zantac to start for 2 weeks and a soy based formula. We agreed this is just to try them for short-term and we are going back in 2 weeks to review. I mentioned I know soy-based formulas are still bad for some babies and sometimes Zantac isn’t enough and he said yes, but this is just somewhere to start for now. We’re on 1.5ml Novo-Ranidine twice a day (15mg/ml).

He also prescribed me Celexa for anxiety/depression after asking “I understand the reflux has been getting to you?”. That’s an understatement!

I’m just glad he’s taking me seriously and we are trying something. He’s also getting me a referral to a local pediatrician.

[Author]

Posts