Second Opinions

Today was Charlie’s second opinion with the new pediatrician. It went well and not well. This post is long, FYI.

What didn’t go well was how long we waited. Our appointment was at 11:10. I arrived fifteen minutes early to do paperwork. At 12:30 I was leaving because we seriously couldn’t wait much longer. Charlie was beyond needing a nap and really unhappy, I was starving, and my patience had fizzled out. The nurse was like “Eh, whatever.” But the receptionist actually stopped me on the way out the door and said she completely understood my frustration because I have a baby with NEEDS, but that something I needed to know about this doctor is that a) she is very thorough, so it is like her to sometimes run behind, though she tries to schedule her appointments in such a way that this is kept under control and b) they had had two emergencies that morning, both of which ended up requiring EMS to come and take the children to the hospital for being admitted. Both of those emergencies just happened to be with our doctor, and they were the two appointments before ours, so it was sort of the perfect storm to mess everything up.

So I said, as nicely as I could muster, that I needed to know how much longer it would be, because while I understood the issue and would never expect her to put us over an emergency, I had a child with NEEDS. She said to give her ten more minutes tops. So we stayed.

I’m honestly really glad we did. First the doctor came in and was very calm. She apologized and repeated what the receptionist had said about the emergencies. And Charlie and I had heard a couple of kids crying pretty hard. I just assumed it had been shots. Now I feel bad for being so frustrated when there were really sick kids, but anyway. I appreciated that she apologized. I’ve waited forever for some of my fertility appointments and never gotten an apology. Then we got down to the business of the appointment. Here were my main concerns:

1. Miralax is for adults and I don’t want my daughter on it long term without some testing done to find out WHY she needs it
2. Charlie will often eat a food one day, and then have it in her poop for several days after (this was a key detail so I’m glad I brought it up)
3. Miralax seems to be solving the issue of getting the poop out, but it does not seem to be making her feel better as she has been super clingy and cranky for the last week
4. What if there is a serious issue that we’re missing because we’re not running any tests?
5. Does she have to take the miralax in a liquid really? Because we can’t get her to drink the four ounces required from a cup.
6. Oatmeal? Yay or Nay?
7. Alternatives to Miralax

1. Miralax IS for adults, but it’s pretty gentle and she often prescribes it for her patients. However, it is not our only option. She would not want Charlie to be on it long term either.

2. There are three common things that could be causing Charlie’s constipation at this stage:
a. Not enough fiber. We know this isn’t the issue because the kid gets tons of fiber in all of the beans she enjoys so much and the fruit.
b. Not enough liquid. This is hard to measure since she nurses but she has wet diapers and the pee is clear, so that’s a good sign that all is well.
c. Slow transit time. This is what we think is the issue. She said that it usually resolves by 15 months. If by that time we have not seen an improvement she will want Charlie to see a specialist to diagnose further. This is probably why charlie eats black beans on a Tuesday night and I’m still seeing them in her diaper on a Thursday.

3. Miralax is not a one size fits all cure for everyone. If it’s making Charlie feel bad then it’s not doing it’s whole job. We talked about alternatives which I’ll address in number seven.

4. See the answers to number two.

5. She CAN take miralax in a solid, but because of the nature of the drug (drawing liquid into the stool to make it easier to pass) I need to be really letting her nurse whenever I can. she nurses on demand, but she gets distracted easily playing so probably I need to be stopping her more. Also we need to keep working on getting her to drink some clear liquids, even if that means a bit of juice here and there.

6. Oatmeal is hit or miss. For some kids it blocks them up and for some it keeps things moving. It’s hard to say what it’s doing for Charlie since she’s only been eating it under the influence of laxatives lately. She definitely said not to the rice cereal though.

7. There are two alternatives to Miralax:
a. Milk of Magnesia. For this Charlie’s dose per day will range from 1.5-4 teaspoons. It’s safe for her to be on until we can get further testing done if the issue doesn’t resolve.
b. Magnesium Citrate. This has to be mixed with water. You take whatever your dose is and add that same volume of water. This would lead to Charlie again having to be able to drink about four ounces of liquid from a cup or a bottle. So this is a no go.

What we both decided would be best is giving the Milk of Magnesia a shot. Chief got some today after work and Charlie sucked it down with enthusiasm. We put it in a dropper (took two, but thats ok) and she was like a baby bird opening her mouth for it. I can probably just give it to her by the spoonful from now on, and we can split the dose up over the day to spread it out which is probably what we’ll do. We started with just a single tsp tonight to see what the minimum we can get by with is. Magnesium is a dietary necessity so she said we can almost think of this as a dietary supplement, which she probably just said to make my “I DON’T WANT MY BABY ON DRUGS” mindset feel better.

After we got all of that out of the way I asked her what red flags she looks for developmentally in a nine month old. Hers were:

1. Not rolling well.
2. Not being interested in picking things up off of the floor
3. Not babbling at all
4. Not sitting up from a laying down position

She said those are the big ones for her. Charlie is doing all of that and more now. I told her that she started to crawl and sit up within a day of her last appointment. She said she wouldn’t recommend OT for those things anyway, that she recommends OT for the fine motor skill issues, like pincer grip.  She said she was absolutely NOT worried about her not speaking yet-that her own daughter didn’t say “mama” until 15 months and she wasn’t worried about it. She said by 18 months they should have some words for sure, but that nine months is pretty early to worry about it. She said 2-3 books a day is stellar and more than most kids get for sure. She said all the right things, and she listened.

She actually said that’s kind of her downfall, she listens a lot because she doesn’t want to make a mistake. Finally. She said she actually seems about 25% fewer patients a day than her colleagues because she wants the extra time. She wasn’t knocking them-she said she knew lots of parents who didn’t have time for that and WANTED a fast doctor, but she straight up said that’s not her and she wouldn’t be offended if I wanted to trial someone else in the clinic. I said that as long as the wait we experienced today was not typical I was sticking with her because I left the appointment feeling reassured and on track with our plan. So she is our new doctor officially. She even works one day a week as the medical director of a local program here for developmentally delayed kids, so she is very knowledgeable about those issues, which means I’m not just going to sit in a doctors office and have a form checked off about my kid ever again now that we’re with her. She sees true delays every week so she’ll know if Charlie has one pretty quickly.

She even went over how their clinic handles everything. I told her about my issue with the two nurses at our old office and she told me about the difference between what an LPN and an RN are allowed to do and assured me that only one nurse would ever be answering questions from their office. We talked about after hours calls and about how it’s handled when she’s out and Charlie gets sick (let’s be honest, it’ll happen at some point). I was satisfied with everything and ready to sign on the dotted line.

So that’s a LONG post, but guys I am really glad I stayed. I feel bad for getting frustrated and hope they won’t judge me too harshly for that. I have resting bitch face on a good day so I’m sure I was not pretty looking as I was walking out.

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Charlie’s Troubles Continue

Sigh. Charlie spent the morning being constipated again. Despite having Miralax everyday for a week.

She woke up with a dirty diaper, but I already knew we were in for it because it was way more solid than it should have been. then she had two more like that after straining and crying. I dosed up a bowl of oatmeal with some Miralax. I gave her half a capful. It seemed like too much when the doc said it so we have been giving her half that much and she’s been going just fine, but today I figured I needed the big guns. She went down for a nap and then had a “normal” (rank, foul, super gross, but normally textured) poop full of last nights black beans after much straining, though at least no crying.

And then she felt like crap all day. Fussed, super, SUPER clingy, couldn’t ever seem to nurse enough to satisfy her-just general all around crap day. She’s also been sleeping terribly and I was blaming it on her crawling, but I’m also wondering if it could be miralax/constipation induced.

I’m afraid the Miralax is putting a band-aid on this issue. Sure, it’s getting the poop out, but my kid still feels like crap. I just can’t accept this. She has an appointment with a new doctor tomorrow, an actual pediatrician. And if she doesn’t have answers for me then I want some referrals. Everything I read about miralax in kids is that parents use it because their kids won’t eat a balanced diet and so they get blocked up. Charlie eats fruits and vegetables constantly. Yesterday she had pineapple, grapes (cut into quarters) and cantaloupe for lunch. Black beans for dinner. The day before that it was asparagus and oatmeal, and one tiny bite of my birthday cake. She shouldn’t have been blocked up today.

I just can’t accept that Miralax is our only answer. I need more than that. I need someone to say “let’s try to figure out why this is happening. Let’s make sure there isn’t an underlying reason for this.” I hate to put her through unpleasant testing, but I think I owe it to her to be her advocate. I want a blood test. I want to talk to a GI doc, maybe an allergist?

I want answers for my baby girl and I want her to stop having to live this way. It may sound dramatic, “it’s just a pooping problem,” but it’s hurting her and making her miserable and I want it to stop.

That stupid lump

A while back, I can’t remember how far, but a while, I posted about finding a marble sized lump in my hip. At the time my doctor said it was probably a lipoma, a non cancerous lump, or something that developed from an injection. Either way he said it was not harmful, but that if it bothered me he would be happy to order an MRI (or an ultrasound, I can’t recall which now).

For some reason, because I don’t have anything better to do, and because I brushed my hand over it just now, I’ve decided to worry about it tonight. Probably because I have a daughter now. I know that it I had had cancer for the last few years that my blood work through treatments and pregnancy probably would have showed something (right?). At any rate, I feel like I need to get it checked out for my peace of mind. I wish I had done it years ago so I wouldn’t be thinking of it now.

A Bit All Over the Place

This would be more eloquent if it were split into two posts, because the topics I want to talk about are SO different, but let’s get real-I barely get here to post once a week sometimes. The chances of two posts happening of any real substance in a week are slim.

So, topic one: Poop.

Literally poop. When last we spoke I was really effing mad at the doctor. I still am not pleased. But at the end of Monday Charlie had pooped more than she had ever pooped before. I was pretty against putting her on Miralax, but at the same time did NOT want a repeat of what happened. So my compromise was to go ahead and give her half the dose he wanted her to have daily until we got our second opinion (which is set for a week from today).

The problem is that Miralax is powdered and has to be mixed with a liquid. Well, Charlie doesn’t take bottles and hasn’t handled cups well yet. She just looooooves to nurse. So I called them yesterday against my better judgement and talked to the bitchy nurse, asking if I could put the Miralax in Charlie’s oatmeal.

She called me back about six hours later saying, really snippy, that no, Charlie needs to take it in a liquid, and that Oatmeal is probably constipating her anyway, and if we HAD to do anything other than a liquid it should be rice cereal.

I’m not sure if anyone else is out there screaming, but what the fuck, right? Rice is the “R” in the BRAT diet, known for being a binding agent. Oatmeal is known for helping to keep your bowels moving. Could they be any more backwards?

So that was the moment I decided to just go full on rogue until we saw a different doctor. Today I got Charlie to take about half of her dose in breast milk in the magical cup that we FINALLY found that works for her. There’s no way she’s going to drink 4 ozs from this cup though-that’s just a ton for a tiny baby her size that breastfeeds primarily. The other half I added to pears that I blended to a chunky consistency. she didn’t love them because she just isn’t a puree fan at all, but she did eat about 50% of them. And she did poop today after getting her dose yesterday (she will take the milk in a bottle if I’m out of the house for a few hours), so that’s something.

I’m resigned to this situation for right now because Monday was just awful and I can’t put her through that again, at least not without doing everything I can to prevent it. I’m being so super careful about her diet. Last night she had black beans and tomatoes for dinner. Tonight it was broccoli and the blended pears, and she had an oatmeal snack this afternoon (that I poured a bit of her Miralax spiked breast milk in). I even replaced the water in the oatmeal with pear juice and she dug that quite a bit.

One problem is that I have been gradually tapering off my pumping in preparations to stop in a few months. I’m done to ten minutes each side once at night, so I’m not getting much. Probably about 3 oz’s max now, compared to the 8-9 oz’s I was getting in my pumping heyday. I wasn’t worried about this before but now that she actually needs to drink a bit out of a cup each day, the pressure is on. I can thaw out what I have in the freezer, but it’s frozen in 6 oz portions and since you have to use it the same day, that means I’ll be tossing a bunch. Grr. And I reeeeaaaaalllllyyyy don’t want her doing juice every day yet, because SUGAR. I may lose that battle though. A bit of sugar is better than a miserable, hurting baby.

Topic two: The Heavy Weight of Infertility

I know, right? How did we go from baby poop to this?

Today we went to the grocery store to shop for dinners for the next week (I spent $40.00 yesterday just on stuff to help my kid poop: Pears, pear juice, prune juice, miralax, avocados, black beans, almond milk for smoothies). Charlie was in such a good mood and Chief had so much fun playing with her. He zoomed her around the aisles like she was a rocket ship and she giggled and kicked and we all just smiled the whole time.

They even kept it up on the way to the car. Chief and Charlie would chase after me and he would “crash” her into me whenever I let them catch me and she just giggled and exploded with laughter.

And the whole time, creeping into this incredibly wonderful family memory, was the thought that there was someone around us who could be hurting from seeing our joy. I know this because I was that person just a few years ago.

It’s a really complex situation, being a mother after infertility. We all know this. You’re not cured. It’s not like the flu-you don’t just move on with your life afterwards. I mean you do, but it’s still there. And I know that no one would expect me to not be happy or playful with my child in public or anywhere else. But it doesn’t change the fact that I think I will always feel a little guilty for it. I just wish that there was something floating above my head that says “she fought for this and it happened for her, and yes so much of it is luck, but maybe it can happen for you too.” I need a happiness disclaimer, and I wish that weren’t the case.

Seriously about to be done with our doctor

So. The doctor told me to give her a glycerin suppository. So my husband went and got them. When I didn’t hear back from the doctor and my child was in pain I researched a safe dose myself. I gave her 1/3 of the bulb, which contains 2.8 g glycerin (pedialax if you’re interested).

One nurse called and I told her what I did and she said it was fine.

Then another nurse called and said I should NOT give her this. I said so what do I give her? And she said a glycerin suppository. She said that’s not what I had, I had a laxative. I was like….umm, okay, but it says the ingredient is glycerin. She said it was the wrong thing and not to give her that.

Well it’s too late and now I’m afraid I’ve hurt my child. Could they be any more unclear?

What the fuck just came out of my baby

So I did the suppository-about a third of it anyway. It’s for ages 2-5 so I didn’t want to do the whole thing. I was trying to wait for the doc to call me back to tell me how much to do but she was screaming in what looked like horrific pain so I just did a bit of research.

Holy fuck.

Within a minute (thank goodness I diaper quickly) a hard poop bigger than a flattened softball had come out of her. She screamed and clawed at me the entire time and I absolutely do NOT blame her. She sobbed afterwards and is now asleep on my chest. Please god let that be all the poop my child has in her.

Edit: it was not all the poop. Not by a long shot. But the rest is coming out easily. We’re going through diapers but I have a happy baby again.

Blocked Baby

Poor Charlie. We’re dealing with some real unpleasantness these last few days.

Charlie is constipated. And it’s becoming chronic.

A few weeks ago I noticed her straining. She hadn’t pooped in 2-3 days but I had been told that that was normal. I knew that straining, especially with no result, was not. So I jumped on it and gave her prunes. She ate the better part of three prunes and had a poopsplosion. problem solved. It happened once or twice more, always easily resolved with some prunes. Even so we decided to really restrict her refined carb intakes. Much to her chagrin, this meant no more gerber puffs and pieces of crusty bread from Panera (excellent teething food).

And yet despite having a diet of almost solely berries, oatmeal, broccoli, black beans and sweet potatoes. Charlie is constipated again. I didn’t freak out. I gave her the prunes.

Nothing.

Okay…juice. We tried juice with a bit of water added. She had a few ounces.

Nothing.

Abominal massage, bicycle legs, lots of crawling, jumping in the jumperoo, more prunes, more juice and water, a warm bath….all nothing.

And then she woke up today and we did it all again and got… nothing.

Well, that’s not true. I got two little poop pellets after watching my baby shriek and scream like someone was torturing her. I called the doctor and they said I was doing all the right things and that if they weren’t working we would have to try a suppository. So that’s what we’re going to do. My husband is bringing one home on his lunch break.

This should fix it in the short term I realize, but what am I going to do in the long term? I asked the nurse at my doctor’s office and she didn’t know of anything I could give her on the regular to help with this. I hate seeing my baby like this. In fact, I have to go because she just started shrieking in pain again.

Any tips are welcome.