My ped. scared me today, and I am terrified now. (sorta long)

Bluescarf

Today I took my son in to the ped. because since starting solids three weeks ago he has had some problems with his bowel movements. He seemed to be going a few days without a bm then would poop several times in one day with some pain in doing so. After being weighed, etc. his ped. looked at his chart and stated that he is worried. He has consistently been in the very low percentiles for weight (around 2% on the standard chart) but above average in height. They didn't seem too concerned about it but now it looks like he hasn't gained at all in over a month, and even dropped a little today since his weigh two and a half weeks ago. Among some ideas he gave for why this could be happening and how to get him to gain weight he suggested the possibility of cystic fibrosis. I felt my whole body go into a sort of shock thinking about that. He asked questions about if his bowel movements look very greasy or smell very bad (they don't), and if he had a bowel movement at birth( he did immediately). I guess these are signs of cf, if he hadn't had a bm within 48 hours or greasy bms. He wants to do another weight check in three weeks and if he hasn't gained they want to test him. I've cried so hard at the thought of my sweet baby having something like this, and hope they are just throwing out possibilities, but I am so extremely terrified. Am I overreacting? Has this ever happened to anyone else?

ETA: Before solids he would go sometimes two weeks without a bm, most often 7-8 days. I guess problems passing bowel movements is another sign sometimes, but I thought this was normal for ebf babies.

CaniacMom

I haven't been in this situation but wanted to offer thoughts and prayers to you.

I do not think you are overreacting - I would do the same in your shoes.  It sounds like he does not have the symptoms of CF so try to let that ease your mind at this time. 

 

Swan21

Are you a CF carrier? I was tested at my first OB apt and came back positive so my husband had to be tested. He wasn't a carrier so at the most our LO could be a carrier. I thought it was a standard test. Hopefully your LO will be feeling better soon. DD has pains and problems with constipation but it's related to her colic.

Bluescarf

I don't think I am a carrier, I know they ran the gamut of tests and we did the nuchal screen also. I think I'll call and ask though. I'm not sure about dh though.

janecanadian

That's scary news for sure but don't think the worst just yet.  Has he had any issues with his lungs?  Persistant coughing and wheezing?  I believe that is a major symptom.

drpayne

It seems a little drastic (and irresponsible) for the pedi to toss out such a scary diagnosis with nothing substantial (or very little) to base it on.  The weight issue seems like a valid concern but it's pretty normal for BMs to be inconsistent.  GL to you... try not to worry too much just yet.

GHBEA

I am very sorry you are so worried I would be too.  Did he give you any information to take home?

My OB asked if we wanted to be tested for CF it wasn't a standard test they do automatically at our practice.

Bluescarf

He didn't give me any information to take home, but unfortunately this is not his way on anything. He told me this, then when I started to tear up he pat my arm and said I'm doing a great job with him, etc. I think he wants to wait the three weeks first to see if it's just a phase for him and he'll start gaining again soon. He also suggested supplementing with formula in the meantime. I don't want to do this but probably will in case ds just isn't getting enough from me, which also makes me sad. I want to do what's best for him though.

themissizz

drpayne:

It seems a little drastic (and irresponsible) for the pedi to toss out such a scary diagnosis with nothing substantial (or very little) to base it on.  The weight issue seems like a valid concern but it's pretty normal for BMs to be inconsistent.  GL to you... try not to worry too much just yet.

My thoughts exactly. 

pattipu

Gage's newborn screening came back positive for CF and it was the worst month of my life until I got the final results indicating that he is only a carrier.  First, call your OB and find out if you were tested during your pregnancy.  If you were and it was negative then he will not have it.  Also, find out if CF is one of the standard tests within your states newborn screening.  If so, your pedi should already know that he was cleared. 

There are three major indications that a newborn has CF.  They are a lack of the first bm after birth, little weight gain and something else which I'm so sorry that I can't remember.  I've also been told by those that have children with CF that their skin will taste salty. 

I avoided researching it at all online because I was terrified but my husband told me I needed to be prepared.  It's a lot of scarey info but the doctors told us that treatment has come a long was and it's not as bad as the current information seems.  I know it's easier said than done but try not to panic before you know for sure what's going on.  You'll probably find out in the end that all is fine and perhaps just need to change his diet. 

My LO has had bm issues for a while and we backed off of cereal (I feel like the issue started when we introduced the oatmeal cereal) and increased his intake of prunes, peaches, pears, green beans and peas.  He also gets pear juice and water now too.  Stay away from bananas and apples.  It seems to have helped a lot, though some days he still struggles.

Good luck to you and your LO and feel free to PM me if you have any questions that maybe I can help with.

 

Bluescarf

pattipu:

Gage's newborn screening came back positive for CF and it was the worst month of my life until I got the final results indicating that he is only a carrier.  First, call your OB and find out if you were tested during your pregnancy.  If you were and it was negative then he will not have it.  Also, find out if CF is one of the standard tests within your states newborn screening.  If so, your pedi should already know that he was cleared. 

There are three major indications that a newborn has CF.  They are a lack of the first bm after birth, little weight gain and something else which I'm so sorry that I can't remember.  I've also been told by those that have children with CF that their skin will taste salty. 

I avoided researching it at all online because I was terrified but my husband told me I needed to be prepared.  It's a lot of scarey info but the doctors told us that treatment has come a long was and it's not as bad as the current information seems.  I know it's easier said than done but try not to panic before you know for sure what's going on.  You'll probably find out in the end that all is fine and perhaps just need to change his diet. 

My LO has had bm issues for a while and we backed off of cereal (I feel like the issue started when we introduced the oatmeal cereal) and increased his intake of prunes, peaches, pears, green beans and peas.  He also gets pear juice and water now too.  Stay away from bananas and apples.  It seems to have helped a lot, though some days he still struggles.

Good luck to you and your LO and feel free to PM me if you have any questions that maybe I can help with.

 

Thanks so much for this insight. I just recently figured out the banana problem but I thought I was helping him by giving him apples. Ah! I get so confused. I did call my midwie practice and found out I was not tested for cf, I guess it's not a standard test here? He's never had cereal before because we skipped it and went on to veggies first. How scary you went through a month of worry before finding out he was only a carrier. I hope I don't have to stress that long, I don't do well with worry as it is since I have OCD/anxiety which can lead to depression quickly. I absolutely do not want that with a baby.

Bluescarf

AmyG*:

I think I'd probably  go find a new pediatrician with that kind of info!

There is no reason to tell a parent you think their child has some BIG THING if you aren't going to test for it and just wait and see.  That is poor bedside manner in my opinion.

 

if you are worried about weight gain, watch the solids you are offering.  a lot of breastfed babies slow or stop on their weight gain when intro solids, because the solids are less nutritionally dense than breastmilk.  ounce for ounce most first solids have less calories than the same amount of breastmilk (or formula).  so baby may be eating too many low calories solids and giving up some of their higher calorie breastmilk.

 

So choose higher calories foods like avocado, and oatmeal.  you can offer formula in a sipper cup with "meals" and be sure to nurse before offering any solids, wait 15-20 minutes or so and then give the solids as a dessert.

I wish this too, for months actually. Unfortunately we are Air Force and the base we are at has no other choices. Just this one specific ped. I do think I might try the formula with meals, more like just a beverage with his food, that hopefully won't interrupt his breastfeeding schedule while giving him the extra calories.

Quesera

AmyG*:

I think I'd probably  go find a new pediatrician with that kind of info!

There is no reason to tell a parent you think their child has some BIG THING if you aren't going to test for it and just wait and see.  That is poor bedside manner in my opinion.

 

if you are worried about weight gain, watch the solids you are offering.  a lot of breastfed babies slow or stop on their weight gain when intro solids, because the solids are less nutritionally dense than breastmilk.  ounce for ounce most first solids have less calories than the same amount of breastmilk (or formula).  so baby may be eating too many low calories solids and giving up some of their higher calorie breastmilk.

 

So choose higher calories foods like avocado, and oatmeal.  you can offer formula in a sipper cup with "meals" and be sure to nurse before offering any solids, wait 15-20 minutes or so and then give the solids as a dessert.

This is all really good advice. There are ways to keep breastfeeding and not supplement, which is sure to interfere with bf'ing. On top of feeding the foods pp suggested, cut his solids back in amount, like one meal per day or just in amount. Be sure to breastfeeding before feeding and breastfeeding on demand, even through the night to make up for calories he isn't getting through the day. I was tempted to supplement to augment the slight weight loss and I'm ao glad I didn't, as we are on track again.

hmontty

Because of a strange posture and continuing head lag, my LO was referred to a neurologist at about 4 months. I was told she could have a neurological problem. After both the neuro and Early Intervention cleared her of any problems, two months later, she now has an occasional lean to the right, but her head lag has largely resolved itself, she's catching up on her gross motor milestones, and we're just chalking things up to her being an individual with idiosyncrasies. But yes, I was awaiting the CP diagnosis for a while there.

The doctor has to check for the nasty stuff before going on to ruling out the less nasty stuff. They have to "cover their butts," and so they start with ruling out the worst possible causes first. My best friend is a physician, so I know this is standard procedure. Do not worry. Get CF ruled out, and then you can move on to figuring out what is really wrong.

KCKappa

Was your LO born in Colorado (I see your info says you're in Denver)? If so, CF is included in the mandatory newborn screen for all babies born there and since he didn't test positive for it at that point, the chance that he would have CF that wasn't caught by the newborn screen is very very slim - and even slimmer given that his BMs don't match what you'd expect of a CF baby. I would ask to go ahead with the sweat test for CF now if your pedi really thinks it's a possibility - I'm guessing he'll tell you that he was just throwing out possibilities and doesn't really think that's what the problem is.

Here's info on the sweat test:

The sweat test does not hurt and you can stay with your baby throughout the procedure. A special gel is put on your baby?s skin on an arm or leg and small patches with wires cover the gel for about 5 minutes. This causes your baby to sweat. The skin may feel warm and tingly while the patches are in place, but it is not painful. The sweat is then collected on a gauze pad or disk. After about 30 minutes, the gauze or disk is removed and taken to a laboratory to measure the salt. The sweat test takes about one hour from start to finish.

violaplayer

I'm so sorry your pedi is an insensitive idiot. I can't believe saying something like that if he isn't going to react to it.

Stupid question - is there a way you can get your LO to sweat and then lick his arm? As others have said, CF sweat tastes salty. It's silly and not 100% diagnostic but it could be one more thing that doesn't fit with a CF diagnosis.

 

*hugs* 

Kell+bell

Just wanted to share, when DS was born he was in the NICU with some breathing issues.  They did an ultrasound of his brain and found a problem.  Then they did a MRI and confirmed it,  So, they told me he might have CP, MR, or MD.  I was completely heartbroken, but as they told me that they didn't know when or if these things would appear, we decided to try not to worry about it till it happened.  Long story made short, he's six months old and completely fine.  His pediatrican (H's partner, he's a pedi, too) told us that he's a completely normal baby.  Some doctor's tell parents the worst case senario ( kind of like they're covering their butts); but most of the time it's something simple.  I will keep you in my thoughts and prayers, but please try not to worry.  You'll have a lot of heartache over something that might not even happen.  T and P always!

st.augbride

I also agree that this was very irresponsible of your ped. I am very fed up with doctors (we see dozens) and the way they just throw around major diagnoses that totally alter your life as if they are nothing. Ds was born early and very small due to sever IUGR from my placenta sucking. We know that is why he is small. However, we too were in a military facility so we rarely saw the same ped twice and each one loved to play "let's diagnose your son". It got very old very fast. Yes, he is only 15lbs and 26.75in, but he was born at 3lb 3oz and 15.25in! That's pretty dang good to me for a kid who will not stop moving and doing baby aerobics! We even had one doc throw out a genetic disorder that is so severe that I was pretty gobsmacked at her casualness about it. I mean, we're talking a horrid prognosis both physically and cognitively, and ds is super alert and social and only lags in weight and gross motor skills from low tone issues. Even though I know this diagnosis by a doc who knew us for all of 5 seconds was total bs, it still rocked our worlds for a bit til we saw the genetecist who laughed at that. My point is that this sounds like a crazy diagnosis to make based off of bowel movements (my ds's are the same by the way...will go a few days and then have a bunch, but we are trying different types of solids so I never thought twice about it). Also, babies have a major slow down in weight gain at this age, and it is possible that if your son is moving more and not eating more, he lost some weight. Also, how much did he lose, since bowel movements and meals relative to the weigh-in time can have a big effect. Also, CF is a pretty common thing to test for, so I'd be surprised if they missed it. Sorry for the book! I'm just so tired of docs doing this crap.

Bluescarf

st.augbride:

I also agree that this was very irresponsible of your ped. I am very fed up with doctors (we see dozens) and the way they just throw around major diagnoses that totally alter your life as if they are nothing. Ds was born early and very small due to sever IUGR from my placenta sucking. We know that is why he is small. However, we too were in a military facility so we rarely saw the same ped twice and each one loved to play "let's diagnose your son". It got very old very fast. Yes, he is only 15lbs and 26.75in, but he was born at 3lb 3oz and 15.25in! That's pretty dang good to me for a kid who will not stop moving and doing baby aerobics! We even had one doc throw out a genetic disorder that is so severe that I was pretty gobsmacked at her casualness about it. I mean, we're talking a horrid prognosis both physically and cognitively, and ds is super alert and social and only lags in weight and gross motor skills from low tone issues. Even though I know this diagnosis by a doc who knew us for all of 5 seconds was total bs, it still rocked our worlds for a bit til we saw the genetecist who laughed at that. My point is that this sounds like a crazy diagnosis to make based off of bowel movements (my ds's are the same by the way...will go a few days and then have a bunch, but we are trying different types of solids so I never thought twice about it). Also, babies have a major slow down in weight gain at this age, and it is possible that if your son is moving more and not eating more, he lost some weight. Also, how much did he lose, since bowel movements and meals relative to the weigh-in time can have a big effect. Also, CF is a pretty common thing to test for, so I'd be surprised if they missed it. Sorry for the book! I'm just so tired of docs doing this crap.

Yes, I totally get your frustration. I am pretty convinced my ped. has no children since he doesn't seem to get how copletely terrifying it is to think that even just the smallest possibility exists that your baby has some life-altering terrible illness. I know he doesn't mean to handle things this way, it's just that I don't think he thinks of what happens later. He can say this, say to wait, and walk away and get on with his day and life. Me? I'm left with enough worry to make me want to throw up, wondering what ifs and how long until I can know?

GreenFlamingo7

Bluescarf:

AmyG*:

I think I'd probably  go find a new pediatrician with that kind of info!

There is no reason to tell a parent you think their child has some BIG THING if you aren't going to test for it and just wait and see.  That is poor bedside manner in my opinion.

 

if you are worried about weight gain, watch the solids you are offering.  a lot of breastfed babies slow or stop on their weight gain when intro solids, because the solids are less nutritionally dense than breastmilk.  ounce for ounce most first solids have less calories than the same amount of breastmilk (or formula).  so baby may be eating too many low calories solids and giving up some of their higher calorie breastmilk.

 

So choose higher calories foods like avocado, and oatmeal.  you can offer formula in a sipper cup with "meals" and be sure to nurse before offering any solids, wait 15-20 minutes or so and then give the solids as a dessert.

I wish this too, for months actually. Unfortunately we are Air Force and the base we are at has no other choices. Just this one specific ped. I do think I might try the formula with meals, more like just a beverage with his food, that hopefully won't interrupt his breastfeeding schedule while giving him the extra calories.

Not true at all. You can change his PCM to a family practice doc, or can be referred off post. You need to contact the patient advocacy rep at your MTF and ask how you can go out on the network for a pedi. If you are unhappy with the care, you do not have to stay with that doc. Given what you have posted about him, I certainly wouldn't keep taking my son to him.

Bluescarf

GreenFlamingo7:

Bluescarf:

AmyG*:

I think I'd probably  go find a new pediatrician with that kind of info!

There is no reason to tell a parent you think their child has some BIG THING if you aren't going to test for it and just wait and see.  That is poor bedside manner in my opinion.

 

if you are worried about weight gain, watch the solids you are offering.  a lot of breastfed babies slow or stop on their weight gain when intro solids, because the solids are less nutritionally dense than breastmilk.  ounce for ounce most first solids have less calories than the same amount of breastmilk (or formula).  so baby may be eating too many low calories solids and giving up some of their higher calorie breastmilk.

 

So choose higher calories foods like avocado, and oatmeal.  you can offer formula in a sipper cup with "meals" and be sure to nurse before offering any solids, wait 15-20 minutes or so and then give the solids as a dessert.

I wish this too, for months actually. Unfortunately we are Air Force and the base we are at has no other choices. Just this one specific ped. I do think I might try the formula with meals, more like just a beverage with his food, that hopefully won't interrupt his breastfeeding schedule while giving him the extra calories.

Not true at all. You can change his PCM to a family practice doc, or can be referred off post. You need to contact the patient advocacy rep at your MTF and ask how you can go out on the network for a pedi. If you are unhappy with the care, you do not have to stay with that doc. Given what you have posted about him, I certainly wouldn't keep taking my son to him.

This is good to know. I had called Tricare directly and asked if I could switch but they said only if I switched to Standard. I'll try this route tomorrow and hopefully find a new ped. Thanks for the info.

st.augbride

For what it's worth, we actually just did switch ds to Tricare Standard so that I could pick all his people and not need a referral. For us, this was a very good decision as we see so many docs and I was tired of Tricare not approving the good pediatric PT we work with (they kept insisting on the mtf one, and she was not very good and PT is absolutely critical for us). Also, within the prime system, the magic phrase is "I need a second opinion". If you want a second opinion they WILL approve for you to see someone off base. I've done this a lot and even got infertility treatments approved with a great private place this way.

GreenFlamingo7

st.augbride:

For what it's worth, we actually just did switch ds to Tricare Standard so that I could pick all his people and not need a referral. For us, this was a very good decision as we see so many docs and I was tired of Tricare not approving the good pediatric PT we work with (they kept insisting on the mtf one, and she was not very good and PT is absolutely critical for us). Also, within the prime system, the magic phrase is "I need a second opinion". If you want a second opinion they WILL approve for you to see someone off base. I've done this a lot and even got infertility treatments approved with a great private place this way.

Exactly. Even though your second opinion can also be someone on post, or they may refer you to another post.

You may have to fight to get a new doc, but it is always possible. If you don't like the care- don't keep taking LO (or you) there.

Bluescarf

Thanks for all your help ladies. My husband was livid about the situation and today we're talking to the necessary people to have him switched. I just put the idea in my head that I will not take no for an answer: I will have him going to a different doctor. I just cannot go back here. I do understand and appreciate my ped. looking at all the options but know he should handle things a lot differently than he does, among other things. We looked up a lot of information last night and are now confused even more since everything says they test for cf inthe newborn screenings we have done and it doesn't look like it misses cf, only if they are a carrier is it a possibility. I'm not positive but I'll certainly be asking about that too.

bootsnbananas

I would definitely be switching be pedi's. yes some drs go with a worst case scenario there is no reason to offer that up if they aren't going to do the testing immediately.

As far as supplementing you can try offering formula after you nurse. If he is getting enough breast milk then he won't be interested in the formula. This way if he does take it you are still staying on your bf schedule but you are getting extra calories into him too. 

Beckwku

First of all I would like to say I'm sorry you are going through all of this.  I'm sure your brain and nerves are working overtime right now.  I've worked with several babies that have CF.  There are variables and stages of CF.  Some people do not even realize they have CF until teen years or early adulthood.  CF babies do have oily greasy sticky stools that are tar like.   Also CF babies have salty skin.  Strange as it may be licking their skin (forehead) not when they are NOT perspiring will taste like salt.   There are a few test the doctors may want to run.  First checking your husband and you for being carriers.  Then there is a urine analysis which is not as accurate as the blood test.  I pray everything goes well for you, and your sweet little one!!!

marie_johnson

When my son was about 8 months old his BMs slowed down to almost once a week. When he would go, he would turn bright red and grunt...sometimes in pain. His BMs smelled very bad. He wasn't gaining weight. He insisted he had some kind of virus, then it was a bacterial infection. His ped did tons of tests with one involving a catheter. I cried just as much as he did...it broke my heart to hear him in pain from all the tests. I ditched my ped and I made an appointment with a gastrointestinal specialist. Dr said that he had a bad case of just being stubborn. He said that my son must have had a BM that hurt then didnt want it to happen again so refused to have another BM unless he had to. Of course when he needed to go again it would hurt again. He prescribed MiroLax. Dr said that it would make his BM so loose (not diarrhea) that it wouldn't hurt. It was 30 days of explosive BM and lots of changes of clothes.

Hes 11 now and still only has a BM every few days or so. Don't let the doctor scare you. A CF test is simple and he should have discussed the possibility of your baby having CF as he was doing the test right then and there NOT making you worry for three weeks. I recommend a second opinion!!