Iain's dr. visit update - grrr

Schnoogly wrote: Took Iain to the ped on Friday for suspected reflux (Mr. Moody has all the symptoms of silent reflux) and not so happy w/the visit. I liked our ped when we first met her (recommended by my OB) and had seen her associate the second two times we were in there. Well, first off she didn't even remember us. Don't you think you would remember the baby with the two heart surgeries??? We explained his behavior (screaming during/after bottles of formula, takes two gulps then screams, sometimes pulls off & fusses w/BFing, refusing to nap, screaming, more screaming, arching, hiccups, stuffy nose, coughing, gagging himself w/his hand) and she first checked him (as she did the first time we saw her) for congestive heart failure even though we told her we had seen the cardiologist on Monday and his heart is fine. Then she checked his ears for ear infection (OK, good), and listened to his tummy. She said he sounded "rumbley" and probably has an allergy to milk proteins. She didn't say anything about my reflux theory. She wants us to try nutrimigen for his supplement and for me to give up dairy. She did give us samples of nutrimigen (which costs like $22 per small can).

Now the kid hates the taste of the nice smelling good start formula and he just screamed and screamed when we tried to give him this nasty formula that smells like barf. He just won't take it, and he's not the kind of baby that will eat it if he's hungry enough. He'll just scream and scream and not eat.

So we gave him his regular formula. I am really not convinced that it is dairy, or if it is, there is reflux involved. She wants to see us in a week. But there is no way he will eat that nasty formula, so even if he does have a dairy problem he'll starve before he eats it. This makes me even more depressed that I don't have enough milk. I'd easily (well not so easily, but willingly) give up dairy for him.

And I'm just so sick of doctors...all we ever do is go to the doctor. I just wish he weren't so unhappy all the time, and I feel awful that he is still suffering, poor baby.

I guess this was a rant/whine rather than an update

Steph

MommyToAshley replied: I am sooo sorry you are going through this.

I have a couple of thoughts...
First of all, does he act the same way when he takes bottles of formula as when he nurses? All the same symptoms? If not, maybe it is a supply issue?

If he acts the same when bottlefeeding and nursing, then I would call your Ped again and tell her you think he should be treated for reflux. If she won't even look into it, then I would get another Ped. Just MHO

Hugs to you!! I hope you are able to solve this soon and he is feeling better so both of you can get some rest and enjoy each other.

momofajcl replied: I'm surprised she didn't remember Iain! I wouldn't think a baby with his history would be the "norm" in any practice. You definetly need to call that dr. and complain about him not taking the new, expensive formula if you haven't already. Maybe there is another with the same stuff in it she wants him to have that will taste better to him. If you don't get results from that dr., seek a 2nd opinion. Maybe another dr. will listen to your concern about reflux. The ped I see will listen to my thoughts on things and if I'm wrong, he tells me why, thankfully, in more simple, non-medical text book, terms. LOL! Good luck and keep us posted!

Roxworld replied: Aw Steph....that just sucks....to put it bluntly. I am so sorry for you and little Lain. I know how you feel about the Dr's. We had to see alot of Dr's for followups after Aidan got out of the NICU....and still have a few til June. I'm a little sick of Dr's offices myself...so I feel for ya. I don't have any suggestions for you on the formula etc....but even though it's a pain in the you know what....I would call the Ped again....be a little more firm on the reflux (not that you weren't before) but be even a little bit more this time....and if she blows you off again, I would definitely find a new ped. You don't have time to deal with Dr's that aren't going to listen to you....especially when you are the one at home dealing with an unhappy baby. Lain has been through ALOT....and needs a Ped that is going to listen to your concerns. I'm sending you and Lain lots of big hugs....and hope that he feels better soon.

Schnoogly replied:
I'm sure you're right that it is a supply issue w/nursing. He will suck eagerly but then he gets mad and fusses and pulls off a lot. He doesn't scream EVER when I offer the breast the way he does with the bottles. This is why I have been waiting so long to bring this up with the dr. There were lots of other explanations for his behavior--I thought all along that he just likes the breast better, hates bottles & formula, and so screams when we offer the bottle. Esp. because he started doing this at about 6 weeks old, the same time he really learned to BF and liked it. But then I read the symptoms of reflux and he fits so many of them, I began to think this was the problem, esp. since heart babies often have reflux.

But he will still spend about an hour screaming after nursing sometimes. And the refusing to sleep, whether during the day or when he goes to bed at night, is driving me crazy and making him very cranky all the time. And he goes through periods when it is bad (like last week) and then the past few days he has been sucking down bottles and acting pretty good (except for the sleeping). So I have no idea. I thought all along that he was just a "high needs" baby (as I read about this in Dr. Sears books & website) and expresses his desires loudly. Plus of course he was very cranky after surgery, which is to be expected. And the cardiac nurse said that he was actually pretty well behaved for a "heart" baby since they are always very very irritable.

Argh. Thanks for your support everyone!!! I will call Monday about the formula. I read alimentum has different stuff in it--maybe it tastes better? I was also annoyed when the ped. said he had "colic" b/c I think that term describes absolutely nothing except to say he is one unhappy baby, plus isn't he a little old for the technical definition of colic? (3 weeks-3 months I read).

I have already gone shopping for my new dairy free diet (sigh). You can't believe how much stuff contains milk/milk products. But it doesn't make sense for me to give up dairy unless he is also on a dairy-free formula.

Steph

supermom replied: Poor Steph and Iain. I am so sorry that you and Iain have to go thru all of this.

First of all, I would think about getting a second opinion. I have found that not all the time (even though they are good dr's) do mom's and dr's see eye-to-eye on everything. Have your records forwarded to someone else, and let them take a look.....Colic doesn't seem like a very good diagnosis to me, either.....

Yes, you are right, if he's still on dairy, there isn't any reason for you to give it up, because if that is the problem and he's still getting it, it won't make his symptoms any better.

Have you seen a lactation consultant about your low supply? Maybe get one that is recommended by your Ped Cardiologist that would be "used" to dealing with high needs - heart - etc, babies. I know you had said you had tried everything about your supply, but maybe they can offer you some more insight. I hate to see someone who wants to BF more than anything in the world have so much emotional pain about it - it breaks my heart for both of you......

HTH - wish I could give you both a big hug in person, but for now this will have to do

Schnoogly replied: Well I have worked with the LCs at the NICU and all they do is high-risk babies. And I saw Gretchen, who is apparently the LC guru of my area--LCs go to her for their own BF problems. All the things they suggest--mostly feeding/pumping more often--I already do. He nurses every 1.5-2 hours during the day and just now goes 4-5 hours at night, but then every 2 after that. I really wish the medical community would put some research into figuring out how to fix supply problems--the med I take is actually for reflux--the side effect is increased prolactin.

I just think that I lost my chance to EBF in the first few weeks--I never developed a full supply in the first place probably because I was sleeping through one night feeding (pumped every 3 hours @ 9, 12, 3 etc. except the midnight one) but at the time I would have collapsed. I did, in fact, break down in the hospital parking lot several times. DH started turning the midnight alarm off so I would sleep (and he's very supportive of my BFing). I got such conflicting advice at the time--several Lcs told me to sleep because rest and less stress would help me produce. Others said regular pumping was essential. Who knows--maybe I would have had supply problems anyway. They told me epidurals slowed the time until milk comes in (like I needed more guilt about that!!) I never leaked colostrum during PG. And then I got conflicting advice about BFing him--nurses/drs said it would "tire him out" but LCs said it wouldn't, plus my instinct said it wouldn't. His O2 levels always went way up when he was at the breast. I didn't really BF him every feeding until he was about 6 weeks old. (I still pumped exclusively). I should have listened to my instincts--but I am a first time mom and was terrified that he would turn blue and die on me at any moment, esp. during feeding.

Sorry to complain so much!!

girlzmommy00 replied: My 3 year old had a similar problem that really was just an allergy and not reflux. It is possible for his symptoms to be allergy related only but her condition was unusual. My oldest had reflux and a dairy allergy. I do think it makes sense to rule out an allergy but you'd think they'd want to check on the reflux as well some time soon.
With my oldest we put her on soy formula and medication and that made a huge difference. Though she had the projectile vomiting which was an obvious symptom of reflux, it's hard when their symptoms don't follow the norm.
Is there a reason they went to Nutramigen and not a soy based formula? Perhaps he'd prefer the soy over the hypo-allergenic. The Nutramigen is gross and expensive. Lily's on Neocate, an amino acid based formula we special order since her dairy allergy is so bad, she's allergic to the hypoallergenic formulas as well (they have small amounts of dairy in them) and she's also allergic to the soy.
You'd think with his history, they'd want to be on top of this. Either way, if you aren't comfortable with the pedi dr you saw, I'd get a second opinion.

MommyToAshley replied: Don't be sorry. I can't imagine going through what you have. You have earned the right to vent! I just hope you are able to get to the bottom of it soon!

Schnoogly replied: Yeah, if I thought nutramigen is expensive, I hear neocate costs like $50 a can!!! Wow, I'm glad you can keep it under control at least. How is she otherwise?

He started off on enfamil lipil in the hospital (that's what they always give) but then was so gassy at our first ped appt she switched him to prosobee (soy formula). This made him extra constipated and gave him eczema on his face, so it looks like he's allergic to soy for sure. That's when we switched to good start on the recommendation of his cardiac nurse.

And you're right, he probably is sensitive to dairy, if not allergic. One LC told me his fly-away hair might be related to dairy sensitivity, and he often has dark circles under his eyes (also a sign of allergies, but also heart problems). I know allergies can aggrivate or even create reflux.

I wonder if another option is donated breast milk from a mom who doesn't eat dairy?? A while ago I met a mom on the internet who donates to an adopted mom and still has extra (can you imagine making that much milk??? I sure can't) and offered to ship it but the cost was too much, plus my freezer isn't big enough to store 37 bags of frozen milk. I know milk banks exist, but you need a dr's prescription I think (hopefully then our insurance would cover it though!!) I wonder if they have moms who donate dairy-free? Anyone know?

Steph

girlzmommy00 replied: That might be an idea, the donated BM, though with Lily's allergies, I'd be hesitant since not everyone is up on exactly what is "dairy free" and different people can tolerate different levels of dairy free. I'd worry that someone would think something was dairy free, eat it when it really wasn't. JMO
Ins usually does not cover formula/infant foods. Our ins does cover Lily's Neocate but only because they covered it for Lauren and we really fought with them on that. Most people I talk to are really surprised our ins covers Neocate since most don't. Here it's about $30 a can but I know in other areas it's $40-$50 a can. I think maybe it's less since the distributer is on the east coast where we live?
So far we know she's allergic to milk, soy, pears and we think peanut butter. We have not fed her peanut butter and hadn't planned to until she was 3 but my 3 year old handed her a peanut butter cracker last week and she was covered in hives and her eye swelled up. She only touched the cracker for maybe 5 seconds and never put it in her mouth, but that was enough to cause that much of a reaction. She also has asthma and eczema and had constant ear infections this spring. Though I'm just thankful she's doing much better than my 3 year old was at this age. Lauren couldn't tolerate any foods until she was 2 1/2. And yes the girls all have bad dark circles. I can always tell when their allergies are acting up by looking at their eyes.
So it sounds like soy is out, but either way, I'd consider a second opinion if you aren't comfortable with the dr. A good relationship with your child's pedi dr is really important. JMO I hope you get some answers soon.

jcc64 replied: I am so sorry you are struggling, you must be physically and emotionally spent. While I don't have any firsrthand experience with Iain's issues, I do have a few thoughts for you. My little brother had some serious medical problems as an infant, his was an abnormality with his intestines, which required surgery to repair. Before and after, he was not an easy baby. He cried, constantly. Eventually, it was decided he had a milk allergy. He was switched to soy, which helped, but he remained an "intense" babyand child. He went on to become a pediatrician in a major teaching hospital. I've since learned a few things from him concerning children's health care. First, drs. know very little about nutrition, they just don't receive much training in the field, and this may be why you get such indecisive, conflicting information. Could a nutrtionist be called in, or a pediatric gastroentorologist? Second, are you near a major city or a teaching hospital? The care is often better, they have access to more sophisticated diagnostic tests and the most current information. Finally, I would be concerned with a dr. who doesn't remember your child, considering his history. I know how tiring it must be to spend so much time in dr's offices, but maybe it's time to find someone who's a little more involved or interested in your child. It sounds like you are working tirelessly to find the care he needs. I wish you and your baby all the best and I hope things get better for you.

dhoppygirl replied: I am sorry that you and Iain are going through this. I totally agree on getting a new Ped. We have only seen our ped for the regular visits and Peyton has never had any problems, yet our doctor remembers him.
As for BFing...from talking with both of my SILs, we all have produced different amounts of milk for each child. I still leak occasionally (and I never produced colostrum while pregnant), but my SILs both had to feed their babies constantly to keep them well fed because they just didn't produce a lot of milk (and they never leaked). I don't know if that will make you feel better, but just remember that you did the best you could for Iain. I would agree that getting your sleep instead of pumping at midnight was a good idea and that is not what diminished your supply.
I don't know if this will help, but from Iain's picture, I just can't imagine him being anything less than a sweet, smiley, cute baby!!!! I do hope an answer is found! I'll keep you guys in my prayers!!

Schnoogly replied: Yes, I see your point about the donated milk--I guess I would want to know whether the mom's own baby was allergic to dairy--she would be more careful in that case. I emailed the closest milk bank to ask if that is even an option.

Wow, it does sound like she's allergic to peanut butter! We have a friend with a 3 year old (who also has cerebral palsy) who is allergic to everything--milk, soy, wheat, eggs, nuts, lots of different vegetables & fruits, and they were in the ER so often before they finally got his blood tested. It must be difficult to have two kids with bad allergies! My friend is paranoid and washes her hands constantly and won't let anyone touch him. I can't say I blame her.

If our next appointment doesn't go well (she wants to see us in a week) I will definitely seek a second opinion. We are lucky to have good insurance so I can just call up a peds GI specialist and make an appointment. I am definitely annoyed that she didn't remember us--it's not like the practice is that big! It's just her and her associate.

And her practice is affiliated with the seventh day adventist university teaching hospital where he had both his surgeries. There are always med students & residents around. It's the best in our area, and this ped came highly recommended by my OB (her own kids' doctor). And we never have to wait for an appointment and the wait is short once we're in the office too. The one time we went to the big peds clinic at the hospital (for his RSV vaccination) it was awful. That would be our other option I think.

But he's been a happy camper the past few days. Fell asleep at 7:30 last night, wow!

Steph

Julie (jem0622) replied: Why not try soy formula? Is he allergic to that too? I know this wouldn't be a normal train of thought...but what about rice milk? Yeah, it's not formula...but he is not going to drink that pricey stuff. Gabe can only have Alimentum and wouldn't touch it w/ a 10 foot pole. My eldest DS couldn't have milk based, but could have soy...but went to Rice Milk when he went off of formula. It is sweet like breastmilk and they have regular and vanilla. Worth a shot. It won't hurt him. I promise. Just consider it.

Julie & Gabe (9.18.02)

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Schnoogly replied: Thanks for the tips, Julie. I suspect that when he's a little older and doesn't need to subsist entirely on breastmilk/formula we will go to rice milk. But for now it doesn't provide complete nutrition. And he got a rash from soy formula so that's out.

On a happier note, I bought some alimentum hoping it might taste a little better and he is actually eating it. And my mom watched him last night while we went to the movies and he was pretty happy the whole time and drank a whole 3oz bottle for her (that's a lot for him at one time). He seems to be OK with it, and he slept pretty good last night so maybe, cross your fingers, we have found a solution. I am dairy free as of today though I read it can take a couple weeks to get all the dairy out of my system. I hope he's not sensitive to the soy in my diet too b/c if I have to give up soy and dairy I'm going to go coo coo. I'd have to eat flesh, lots and lots of flesh. Makes this former vegetarian feel very guilty.

Steph

MommyToAshley replied: That's great news Steph!! I am so glad he is eating better and sleeping better.

I am crossing my fingers that this keeps up!