Ask Moxie

Special needs of all sorts and the school year

I had a great time at the Phila area meetup yesterday. What an interesting, thoughtful, funny, snarky bunch of people.

One theme that came up a lot was that parents seem to be dealing with all kinds of issues with their kids and a variety of special needs, and things seem to be extra amped up now that school's in session.

Food allergies. ADHD. IEPs. Therapy. Learning disabilities. Movement issues. Autism/Asperger's. All kinds of stuff. I just think about these parents standing at the bottom of the cliff, looking up, knowing they're going to have to do such an incredible haul to get up to the top to make sure their kids are OK. It's exhausting just thinking about it.

And if you're thinking, "This doesn't affect me," well, it might, and you just aren't aware of it. I found out last week that the "nut-free and dairy-free classroom" notice for my son's class didn't just mean that one of the kids, A., wasn't allowed to ingest dairy. It means that if A. touches dairy or touches a kid who's touched dairy and hasn't washed hands in between, he puffs up like a big red itchy wheezing balloon. It would have been nice to know how serious it was, so that I'd avoid all dairy things in my son's lunch. I'd been putting cheese inside his sandwich on the logic that my son knew not to give bites to other kids in the lunchroom (bonus of my short-lived gluten intolerance--my son accepts food issues). But once I told my son about the other kid's allergy *he* said, "Oh, so I shouldn't bring cheese in my sandwich anymore in case I accidentally touch A. after I eat it!" Woulda been nice to know--for us *and* for A. and his mom--three weeks ago...

So, anyway, until I get the message boards up and running, could those of you who've been there (enu, hedra, etc.) provide some emotional support for the parents who are in the middle of a long process of advocating for their kids? Also, is there anywhere online a printable list of commercial snacks that comply to food allergy specifications? (Like a list of snacks that are GF, one that's dairy-free, one that's soy-free, etc.)

Q&A: Drunk Daddy

This is the post that's been stopping me from posting this week. I couldn't get past it, but still don't know exactly what to say.

Amy writes:

"I have been searching your site and could not find advice or feedback on how to deal with Alcoholism in the home. My spouse is an alcoholic. I, as a first time mom, am finding the stress of juggling the sucking vortex of sleep disturbances/teething while watching the clock from 4:30 till 5:00pm(is he coming home from work or is he stopping for a "quickie" at the usual watering hole?) with the vigilance of a death row inmate wating for a stay/phone call from the governor before the lethal injection to be altogether too much for me. I am attending a weekly Al-anon meeting, and thank God I can bring the baby along. I stay at home and have been unable to get a sitter, let alone pay for one. We are living on one income and it is just not making it.  Also, I have a weekly family therapy session, and I have been taking the baby there too. It's a blessing that our insurance for mental heath care does not require a co-pay! And I can go up to 52 sessions a year! Whoo-hoo, cause I need 'em, I really do. Not only is motherhood kicking my ass, but feeling something like a single parent was something I hadn't bargained for.

    I say SOMETHING LIKE, because I am not faced with leaving my baby with a childcare provider or family member while going to work/school. Ugh. Hats off to you ladies and gents who are doing this alone! My mom did it with five kids and when I ask her for advice, she simply states, "honey, I can't even remember the Vietnam War. How am I supposed to remember how I fed/dressed/diapered 5 kids on a police cadet's salary in the sixities?

    So what to do, what to do. I feel like I cannot leave the baby in his care and get out of the house alone for a spell, which I need to do DESPARATELY-even if it is running errands on the Mommy Clock. That's if he even makes it home at a reasonable hour. By reasonable, I mean 7:30pm, for the whole bedtime routine. If he does make it home, he usually is pretty buzzed or completely innebriated, so much so that I cringe when he picks up the baby and walks around the house with him. Not like he's ever dropped him, but it still makes me nervous. So husband might spend 1/2 hour with baby a day, sometimes, and then he generally passes out in front of the TV. Husbands says he fell asleep, but I know better. Anyway, he's gonna do what he's gonna do, while I am concentrating on everything else that needs to be done, with safety first on my mind.

    I sent a few questions your way this week regarding sleep and routine, etc., etc., and I feel my husband's behavior (not spending time with our child, walking funny, talking funny when he is home) is contributing to Grumpy's overall development, bar none the loosey-gooseyness of our ever deteriorating schedule.

I am trying to get husband involved, with bath time and feeding (we are in our first week of cereal 2x a day) but he can't be here at any given time after work hours.

Should I give up, or will pressing the importance of the routine issue become a routine in itself? He won't change diapers sober, but he dotes on the baby after a few beers, let me tell you. Help! I feel like I am searching for the tv remote in the bedcovers at night without waking the baby in bed with me, and all I have to search with is a single foot and a dim light at the end of the hall.

    How can a girl find a free sitter? What are sitters charging nowadays? Who can you trust? My son, 6 months old, is going through that clingy,teething,no-sleep stage; so in a way, I feel the idea of handing him over to someone else is an impossible dream, and therefore a moot point.What options do I have? My sanity is involved here. I am nursing him round the clock, and daddy won't give a the baby a bottle, unless he's been drinking, and even that takes timing. Shit. This truely sucks.  

    If you choose to consider posting this, please, you have my thanks. However, once I send this email, I will delete it from my sent messages. I just don't want any more confrontation from husband. It's hard enough getting to a weekly meeting; he's so defensive and in denial."

Oh, girl. I'm just so sorry. This email is sucking the fight out of me just reading it, so I can't imagine how it must be to be living it.

First, get a free web-based email address from gmail.com or yahoo.com or hotmail.com that's just yours. Don't let him know  you have it, and clear the browsing history of your browser before he comes home. Then email me back.

Now, here's what I want you to know, even if you can't do anything about it right now: This is not your fault, and you are built for something better than living in fear of someone in the throes of a disease he can't control and is denying. You are meant for something more, Something far better, and something that makes use of who you are and what you can be. And your son deserves far better than he's getting right now, too. You're going to have to leave. Even if you can't do it now, you know it. When you're ready to, you will. Thousands of women have done it and are doing it, so you can, too. And we'll be right here to help you.

And it's not safe for him to be in charge of your baby. When he's sober he might be a wonderful guy. But alcoholism changes people and makes them behave in ways that are not rational. Until he gets into recovery, you cannot trust him with your son. And there is nothing you can do to get him out of denial and into recovery. Your job is to protect your son and yourself. You are the family unit at this point, because your husband is allowing himself to be absent and dangerous. Asking for or trying to get help and responsibility from him is simply not an option, because he's deep into this illness and just can't be trusted.

It sounds like what you need right now is a friend with a child who can trade some babysitting with you. You can leave your child with her for a few hours and then she can leave her child with you for a few hours. (But please please don't take her child while your husband is home--his active alcoholism makes it an unsafe situation.)

I don't have personal experience with Al-Anon or AA, but from my outsider's perspective I wonder if you could approach anyone in your group to ask for some help. It sounds like the alcoholism is making *you* feel ashamed and is limiting your social contacts, and that's tragic. You need all the support you can get right now. Can someone who's been (or is in) either Al-Anon or AA comment about whether she could approach other people in the group, or if that's not something that's done? It just seems to me like those are people with whom Amy wouldn't have to pretend that everything is OK.

This post is dedicated to the memory of D.E., who died yesterday at the age of 37 from complications of alcoholism.

Does anyone have any words of support or advice for Amy? Any women who've gotten out of alcoholic situations? Any people who grew up in alcoholic homes? Any women who are crying reading this like I'm crying typing it?

Message boards for kids' medical issues

Two emails in the same morning on this topic. Erin writes:

"My question is about my sweet pea, he's 15 weeks old and the poor thing has 2 problems, He's been diagnosed with torticollis and we're going to therapy for that, which is super frustrating. He also has recently had x-rays that indicate he might have craniofacial dysostosis. I don't know a whole lot about either problem but what i've read about it freaks me out. Have you or the readers possibly had experience with either of these?"

Then Danielle writes:

"My son (fourteen months) has a ton of medical issues. Do you have any advice about where to find message boards for support that don't suck? Would you consider starting some message boards on Ask Moxie? I'd really like to be in touch with other moms going through similar circumstances but don't know where to start."

To answer the last question, I do think about AskMoxie message boards often, and know there's no way I can do them now, but hope to have them up around this time next year. I hadn't even thought about having a medical issues support board, but will definitely add one when it's time.

The immediate question, though, is what other sites do people use now (the important word) that are good, solid sources for information and support? If you've got suggestions for good sites on different medical topics, please post them. And if you have specific info on torticollis and/or craniofacial dystosis, please clue us in to that.

Sugar substitutes and metabolic syndrome

I'm assuming you guys have seen this article about the study that found that even a can of diet soda a day increases your risk for metabolic syndrome by 34%.

Or this piece on Good Morning America about the article. (You have to sit through an ad first before the story starts.)

I wonder if this is going to make companies stop putting sugar substitutes in otherwise healthy things, like yogurt and food for kids.

I think this also puts the nail in the coffin of soda consumption for many of us. Too dangerous to drink sugar substitutes, and way too dangerous to drink high fructose corn syrup. Plus the caramel color is bad for us, and so is the carbonation.

I guess it's back to water. (Until Passover, when some of the stores in NYC stock kosher-for-Passover Coke sweetened with regular sugar, which I'll indulge in.)

I also wonder if this is going to give stevia (a no-calorie sweetener made from the leaves of the stevia plant) any traction, since it's just a refined leaf, not a chemically-altered substance.

George

I don't have a post in me this morning. I was working on one last night, and planned to put the finishing touches on it this morning while the kids are eating breakfast, but can't do it.

After school drop-off and before I go to work this morning, I'm going to visitation* for my neighbor, who died last week. He'd been an alcoholic for years and years. I remember when I first moved into the building, the police came at least once a month because he and his girlfriend were having a fight and she was attacking him (and then trying to press charges against him). I'd see him around the building, and he was kind and gentle, with this mellow, sweet energy. In the last few years he dropped a lot of weight and started using a walker (I'm guessing he was around 70 when he died) and his speech was labored and slurred even when he wasn't obviously drunk.

I just feel so horrible for him, that his whole life was so wasted by this disease. He was in bondage to alcohol and couldn't free himself. Who knows what he was when he was young, and what he could have accomplished? He should have been New York City Grandpa, taking his grandkids to the Museum of Natural History and out to diners and to the playground, instead of this sad, kind man in a bathrobe reeking of booze.

I feel so bad for his children, who didn't really get to have a dad.

I have no idea where I'm going with this. I think I'm just wondering how people make peace with needless waste and loss. And also how we keep working on ourselves so we don't end up wasting our own lives.

Thoughts?

* This is when the family is at the funeral home and people come to sign the guest book and pay their respects to the family. I grew up with this in American Midwestern gentile subculture, but don't know if it's universal, or is called visitation or something else in other places and subcultures.

Reader call: Mother with MS

Angela writes:

"I'm in the process of being diagnosed with MS (clinically likely - no official diagnosis yet). The worst part of it is that my husband and I planned on starting to try get pregnant the month that I started having symptoms (last month). I'm terrified, and am still hoping that my symptoms could be something else. But, if it's not, I'd love to hear from other mothers who have MS - I know that you can get pregnant (as long as you take a break from the medications) - but I want to know what life is like for a mother with MS. Is it do-able? Should I rush and have babies as soon as possible (I'm 29) before my symptoms worsen? Is it fair to kids to have a mother with MS?"

I don't know much about MS (multiple sclerosis). What I do know is that people have used T-Tapp to control MS symptoms, so that's something to look into.

Also, I think what's fair to a kid is to have a mother who loves them, whose eyes light up when she sees them. What she looks like or how much money she has or what kinds of illnesses and conditions she has are so minor compared to how she treasures them and treats them. It's possible that your children will wish you didn't have MS (for your sake and for theirs), but I can't imagine that they'd wish you weren't their mother.

Anyone out there with MS (or any other autoimmune disease or other chronic health condition) want to comment?

Comments, Christmas week, and other crap

First of all, I know there's something wrong with accessing comments on all the posts from before I switched domain names last Wednesday, and am trying to figure it out with the Typepad people. The comments are all still there, I just don't know how to get to read them yet, but it will all get straightened out soon.

Second, I'm going to be out of town with very limited internet access next week (December 24-28), so I'm going to set posts to autopost every day that week. But in the spirit of combating the stress of that week, I'm going to put an open post up that stays at the top of the screen, so people can just stop by and comment about whatever they feel, whether they need advice, want to vent, or are just looking for some non-family conversation. If you're feeling bored or sad or irate or like you could use a little community, please stop by and see what's up.

Third, we've got another disgusting topic today. In the spirit of the vomit conversation from a few weeks back and the pee overflow question of Friday, can we talk about poop explosions and diarrhea? One of my co-workers was out a few days last week because his toddler had the stomach flu and they were just drowning in vomit and diarrhea. OK, maybe I could have used a different verb there. They were overwhelmed by keeping up with the substances coming out of both ends of the little lad. That's better.

So we're looking for tips on dealing with diarrhea. While we're here, we might as well talk about regular old poopsplosions that newborns have.

I've pretty much got nothing on diarrhea.

I do know about projectile poop, though, and my biggest tip is to put layers on the child's butt to catch the poop. That's one reason I did cloth diapers at the beginning with each of my kids, and not the fancy pocket diapers either. It seems like the extra layers of prefold + cover helps contain the runny newborn poop so much better than a one-layered disposable can, or a pocket diaper that has the effect of a one-layered diaper. The times there was a big poop in a disposable or pocket diaper, the poop got all over the clothes. In a prefold + cover,it all stayed inside the cover.

I've even heard of people who use disposables buying PUL (laminated fabric, what modern cloth diaper covers are made of) covers and putting them over the disposables to make that extra layer to protect the clothes.

Another thing I know about is the two kinds of normal poop that can mimic diarrhea. One is runny green poop. Green poop happens when the milk runs through the kid's system too fast. Sometimes that will happen with a stomach bug (and can continue to be green even after the other symptoms are gone). The other thing that can make green poop is if there's a foremilk/hindmilk imbalance, or the mom has oversupply. The foremilk is the first milk the baby gets, and it's watery to hydrate the child, plus it has lots of lactose. The hindmilk is the milk that comes at the end of a nursing session, and it's full of fat to bulk up the child.

If the mother has oversupply, the child gets mostly foremilk and can never drink enough to get the hindmilk, so they have too much lactose in their systems and their poop can be green. (Other symptoms of oversupply are: falling asleep within a few minutes at the breast then waking up ravenous an hour or so later; putting on weight really rapidly; and making little goat baby noises. If your child is doing this, you may have oversupply.)

The other normal poop that can mimic diarrhea is "drool stool"." When a child is teething, s/he produces drool, and lots of it ends up going down the back of the baby's throat. (If your teething baby has what sounds like a smoker's cough in the mornings, it's from the drool down the back of the throat.) It passes through the stomach and will come out in the poop, as slimy long shards of drool. The drool can also make your baby's poop so acidic you can smell it (eew) and can cause patches on the butt and anus that look almost burned from the acidic drool. (So now your child is in pain in the gums and the butt. Lovely, isn't it?) Use a non-zinc oxide diaper rash barrier cream (plain old Vaseline or Aquaphor will work well) proactively each time you change a diaper to make a coating to prevent the next poop from touching the skin.

I hope you finished your breakfast before you started reading this morning. Please post your poop-related tips for all to enjoy.

Helping a 3-year-old with a parent's serious illness

K writes:

"My husband has just been diagnosed with a very advanced stage colorectal cancer, and we are in that horrid little wait between diagnosis and CT scan results and the beginning of chemo/radiation.

Our daughter is 3 years old in 2 weeks. I am trying to educate myself about the cancer and the treatments, how to help my husband and support his healing, but my question to you all is: How can we help our daughter? She already knows that daddy is in pain and that sometimes he needs to cry and that often he goes to the doctor, but she is finding it hard to understand that daddy cannot play wildly like before and that sometimes mommy and daddy are having serious conversations and sometimes we are sad.

So she is angry and difficult and she needs everything to be just so. We have 5 weeks of intense treatment coming up and this will just be the first little step in a long and difficult process. What can we do to help her? How can we help her later in the process? I am looking for any experiences and ideas of how to help a child deal with serious illness, death, grief... I will be happy for tips on reading and well, anything really.

one additional aspect of my question i just realized is that our daughter is turning away from her dad, not wanting to cuddle, often turning her back to him during dinner etc. you can imagine how sad that makes her dad and it really makes it clear that we need to help her understand all this or at least deal... "

Oh, K, I am so very very sorry for all of you that you are going through this.

I wish I knew what to say and do. I think this post-3-year-old stage can be hard enough for parents and kids to negotiate together, so adding all this on top is going to make things even more difficult for you.

I wonder if it would help to enlist family and friends to help entertain your daughter. Maybe ask if they could take her on outings with their children, playdates, and things like that. It will give her other things to think about and do, and will give you and your husband some time to be able to break down if you need to without having her there.

Readers, do you have any suggestions for K? This is way out of my scope of knowledge.

Q&A: Vomit for Beginners

Amy writes:

"I wonder, if you don't have other, more pressing topics to consider, if you'd post my query for the readers to help me with?

I dare not so much as whisper this aloud, but my 3.5 year old has never had a stomach bug. Historically she has projectile vomited when presented with foods or meds (she has tactile and taste defensiveness from birth), but never as part of a virus. Look, I am not stupid. I know she will eventually catch a stomach flu or get hit with food poisoning, but I don't know how to deal with it. I want to be prepared, because of all the bodily fluids, vomit is the one that I have never been able to deal with well.

There are some basic things I do know, like my day care's rule about vomiting (24-hours minimum vomit-free + standard rules about fevers), and I know to watch my daughter's temperature, to track how many times she vomits in a hour/day, and to do what I can to prevent or treat dehydration. So I guess my questions are primarily practical.

*How do you train a child to vomit into a container? Do you have to train them? Or are they like cats and they pretty much self-train, like with a litter box?
*What do you do with a vomiting child? Resign yourself to sitting with them while the retch, sure, but do you put out drop cloths in between episodes? Or do you isolate yourselves to one room and let it go, knowing you'll just rent a steam cleaner when it's done with?
*Do you make the child rinse her mouth or brush her teeth after vomiting?
*Wait. Aside from Pedi@lyte, how do you prevent or treat dehydration? There's no guarantee I could get that into my daughter, especially if it's unfamiliar."

I hate to say it, but this series of questions made me chuckle. I guess I just can't imagine worrying about puke in this much detail! But maybe that's because my experience of kids vomiting is that it just sort of happens in a flash--one minute the kid's looking a little off, and the next minute there's barf all over everyone's clothes, in my hair, and all over the floor/sheets/couch/whatever. From normal to three loads of laundry in 5 seconds.

In short, I don't think you can really plan for it.

The puking game is different with babies (who often projectile puke, often into a parent's mouth or eyes--I've had both, although thankfully not on the same day) because they kind of just throw up and move on happily with their lives, unless they're really sick.

But preschoolers and up (IME) tend to be more like adults when they get pukey-sick. They just want to lie on the couch and moan. And moan. And ask you questions like, "Mom, am I ever going to feel better again?" with those big sad sweet eyes that break your heart.

I don't think you can train them to puke into a container. If there's a container there they won't avoid it, but they won't be able to hold the barf back, so you'll probably end up doing a bunch of laundry anyway.

On the other hand, I doubt the kid will want to be up and around, either. So the vomit area will be contained, and after the initial shocking vomit episode, subsequent puking will probably be just more of the same, in the same place.

I wouldn't bother with a steam cleaner (assuming you didn't feed your kid a big bowl full of permanent ink right before the vomiting episode), but would just go with Bac-Out or Nature's Miracle or one of the other pet stain cleaners.

Your daughter will want to rinse the taste of the puke out of her mouth. She may not like the taste of the Pedialyte, but you can try a sports drink, or just plain water alternating with juice.

You'll know she's better when she's ready to eat something that's not bananas, rice, applesauce, or toast.

Anyone have any conflicting or additional tips on vomit? Do you have other regional terms for vomit? (I think I covered the standard Americanisms: vomit, throw-up, puke, barf.)

Q&A: thrush + diarrhea = diaper rash X vicious combination

Simone writes:

I've looked through your illness section, and while I have found some information about diaper rashes and teething, I couldn't find anything that throws thrush into the equation. Three weeks ago, my 6 mo-old son was diagnosed with Thrush. (Which in itself is weird since he's on the older side for Thrush, and I'm no longer nursing.) We were given Nystatin, and after now our third round it has proven to be ineffective. Several people have suggested Gentian Violet, and I've heard it's messy. I'm OK with his mouth being blue/purple for a few days. But is it one of those things where if he drools, the drool will then also be purple? How badly does it stain? Is it worth the trouble? I have visions of having to replace clothes, carpeting, etc.! But, we need to try something different because the Nystatin is not working. (Plus, I'm freaked out over the sugar content, and also read somewhere that yeast thrives on sugar...in other words, it sounds like the WORST thing to give.) During all of this, he also developed diarrhea (5 days ago), and subsequently a HORRIBLE diaper rash that we're finding hard to battle. He's vaccinated against rotavirus, but we took him to the doc to be sure and they've ruled that out. It took two poopy diapers to cause the rash, and every time I think we're on top of it, he poops once and it flares up. So obviously the poop itself is an irritant. I am wondering if the two things are related, and that perhaps the Nystatin is what caused the diarrhea. Has anyone else experienced this side effect? He's also teething, which could be a contributing factor, and also why I mention the drooling/staining thing. In the meantime we are limiting his solids to rice cereal and bananas in an effort to help the diarrhea. This is a vicious cycle that we're anxious to break, and my little boy is miserable!! If any of your readers have dealt with a similar situation I'd love to hear how they fixed it.

Oof. This is a big cluster of hideous.

I don't remember what the guaranteed thrush cure is, but I know it was mentioned somewhere in the comments section of Julie's A little Pregnant blog back when her son was a few months old. Does anyone remember what I'm talking about, and remember what the cure was? It contained the word "grape" (grapeseed, grapefruit, grape-something) and was topical and was far more effective (and less messy) the Gentian violet and less disruptive to the system than Nystatin.

Now, if the thrush was out of the picture I'd offer that the diarrhea and diaper rash could be caused solely buy the teething if he's got a ton of drool. Many kids get what's called "drool stool," which is watery diarrhea-like poop, often with strands of viscous drool in it. Talk about things you could never even imagine before you had kids! Anyway, the poop seems to get highly acidic because of the drool, and that can cause diaper rash that's really hard to battle. I also think sometimes the body just causes a rash on the anus the same way some kids get a rash on the face around the mouth near where the upcoming tooth is located. The human body is both wonderful and creepy sometimes.

So I'm hoping someone either remembers or can find the archive of the thrush treatment (I really really want to say grapeseed oil, but have no idea if that's what it actually was) so you can get the thrush under control. Once that's gone you can start working on the other layers. In the meantime, the more you can keep his poor little butt exposed to the air the better you'll probably be. If you can just let him roll around on a waterproof pad for periods during the day it might be the only thing that doesn't make his butt pain worse.

And now let the magic of the internets commence, with the thrush cure appearing in the comments section ASAP.