It All Makes Sense Now

As my children have been diagnosed with various things, I find it makes sense of my own childhood and beyond.  When we first saw my son’s geneticist about his cyclic vomiting syndrome (cvs), he asked me if anyone else in the family had similar symptoms.  I told him, “well, I’ve always been nauseated every night, but that’s normal, right?”  He assured me it isn’t normal.  Then I remembered that you could almost look at a calendar and know when my dad would feel sick.  Talking to other family members revealed that at least one cousin also experienced the daily nausea/stomach pain.

Suddenly, so much of my life made sense.  I understood why, if I got too hot, I felt even worse and even got sick at times.  I understood why there were times when I hadn’t been able to stop vomiting without an IV.  My episodes were never as frequent or severe as my son’s, but I could understand his medical issues more by recognizing the symptoms I myself had experienced.

Recently, my younger son has been exhibiting signs of OCD.  He hasn’t had an official evaluation for it yet, as we’re waiting on the referral to be processed.  I knew I had some tendencies towards that myself, but in looking through how it generally manifests, and the different ways it presents in childhood, adolescence, and adulthood, more of my life made sense.  The things my son says, the things he worries about – those are thoughts I often have.  I can’t turn them off, but I do generally know how to deal with them.  I don’t remember thinking about that as early as my son is, but I can relate to his struggle with this.

While it’s nice that I can make sense of my own life by seeing their diagnoses, what I hope is that my own experiences can help them to understand themselves at an earlier age than I did.  Here’s hoping.

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Expert Food Label Reader

When you or a child develop food allergies, you learn to become an expert at reading food labels, even for foods completely unrelated to what you’re allergic to.  I’m fairly used to this by now,  but every so often I’ll slip and not look carefully at a label.  I almost always regret doing that, though.

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Some of the allergens are readily apparent.  If I look at a package of grated cheese, and see that it says “potato starch” (yes, potato starch really is in many packages of grated cheese in order to prevent clumping), then I know that I can’t eat that.  But what if it says “modified food starch”?  That’s where it gets tricky, as modified food starch could be from potatoes, but it could also be from corn or rice.  Then I have to decide whether to get the product anyway and chance it, contact the manufacturer to ask them, or just choose something else that doesn’t have that on the label.  I recently contacted Just Mayo, actually, to ask about this, and they were able to assure me that their regular mayo contains no nightshades.  Talk about breathing a sigh of relief!

As you can see, allergens can be in the most unlikely places.  Now that more companies are turning away from artificial colorings (something I applaud), they’re more likely to contain paprika (which is – you guessed it – a nightshade).  That eliminates most cheesy snacks, since they often use paprika to enhance the color.

Trickiest, though, is the “and spices” descriptor.  Which spices?  I know they don’t list them all because it’s a proprietary blend, which I understand.  But it makes it nigh impossible to know if I’m truly avoiding allergens.  Paprika is often on labels, but isn’t required to be.  The same can be said of many other spices, too.

And what about vitamins?  Numerous vitamins have gelatin (a no-no if you need to avoid all things from a cow) and/or soy.  Some who avoid soy aren’t bothered by the minute amounts of soy lecithin in vitamins, but others, my son included, are.  If you’re celiac, there are many non-food items that must be avoided in order to truly avoid gluten.

I’ve become accustomed to checking food labels, and many times I just avoid processed foods altogether and make my own.  This makes it difficult when others want to cook for me, because I know others might not know to look at the labels so closely.  Will someone realize that the black pepper seasoning they’re using isn’t just black pepper, but also has red pepper?  Will the person bringing that rotisserie chicken ensure it doesn’t have potato starch or paprika?

It’s often a bigger headache for me to let others cook for me or bring me prepared food, since I can’t know that all allergens have been avoided.  Others with food allergies are similarly vigilant about their allergens.  It’s an outlook I never thought about until I was the one affected, really.  If you’re lucky enough not to have to worry about allergens in your food, I’d encourage you to look at the labels anyway.  Realize the long list of ingredients in foods that you might not expect to be there.  It’s fascinating, but can also help you to see why those with food allergies must be so incredibly diligent about reading food labels.

The Picky Eater

One of the earliest parenting arguments we had was regarding whether to make our child eat all of his dinner or not.  I was against doing so, for I remembered the fights with my parents growing up.  I wasn’t trying to be insubordinate as a child, it was truly that I couldn’t make myself eat certain foods without getting sick.  My parents didn’t understand at first, since some of the things I refused to eat were things that are considered quite normal.  Potatoes, for instance.

So when my son was refusing to eat seemingly normal things, I remembered my own experiences.  It was as an adult that I realized I’m actually allergic to all nightshades, so my avoidance of potatoes as a child was understandable.  I hadn’t been able to articulate why I was avoiding them, but I knew I shouldn’t eat them.  Similarly, I assumed that perhaps our son was avoiding certain foods for the same reasons (interestingly, he self-avoids most nightshades, too).

A few years later, when he was five, he started having his cyclic vomiting episodes.  He also became a much pickier eater.  I assume the two are related, and that, when he consistently feels better his diet will become more varied.  That is what has happened for me, at least.

The bottom line is that my own experiences, and my experiences with my children, have taught me that a child may not be able to express why he doesn’t like a certain food, but that it isn’t necessarily arbitrary, either.  I do always encourage my children to try what I’ve made, but I won’t push it beyond that.  Instead, I trust them if they avoid certain foods.

This doesn’t mean they have the final say, for sometimes there are things they want that I know will not be good for them.  But, it does mean that I don’t push them to clean their plates and eat everything I make.  As long as I know I’ve made at least one item they like, I don’t worry beyond that.

Mom Shaming and My Child’s Medical Condition

Mom Shaming – it seems that no matter what we do as mothers, we are shamed by someone.  Do you breastfeed?  Better not do that in public, or after the child is some arbitrary age.  Do you bottle feed?  You’re killing your child and can’t possibly bond with him/her.  Do you bed-share?  You’re going to kill your baby and you obviously don’t care about sex.  Do you put your child in a crib?  You’re stunting your child’s emotional growth.  Seriously, you can’t win.

I’ve learned that this also applies when your child has various medical issues.  When people have learned about my child being born with gallstones, I’ve been met with various reactions.  More than one person has asked me what I ate during the pregnancy, implying that my diet caused his gallstones.  If that were true, all of my kids would have neonatal gallstones, as would every American child, since I didn’t eat things out of the ordinary and I generally have a good diet.  Even though I know that in my head, those comments at one time caused me to question whether they could be right.  Such thinking is counterproductive, though, since I wouldn’t have been able to change anything anyway by looking back (and again, there’s no reason to think my diet would’ve been at fault anyway).

Then when we didn’t immediately choose surgery, I was told that I was a horrible mother for keeping my son in pain.  That person didn’t ask for what doctors we’d seen or steps we’d taken.  She didn’t ask what the opinion of his medical team was.  Had she asked, she would’ve learned that we’d come very close to considering surgery when his liver profile showed some high enzymes, but that when we spoke with the surgeon, she said she personally wouldn’t advise the surgery because she couldn’t guarantee it would ease any symptoms.  Now, years later, his GI and geneticist agree that many of the symptoms came not from the gallstones, but from cyclic vomiting syndrome.  Had we done the surgery, it wouldn’t have changed that and I would’ve felt even guiltier for making him go through that.

Then there are those who are more subtle – they suggest that if I just followed this diet, or tried that supplement, that he’d be completely cured.  I don’t deny that dietary changes and supplements can help.  After all, I controlled his gallbladder attacks with my diet, and I’ve eased my sons’ chronic nausea and vomiting episodes with levocarnitine.  I also recognize that these people are genuinely trying to help and suggesting things they think might work.  I’d prefer it, though, if they had first asked what I had tried or not before suggesting something else.  Of course, I’d also appreciate it if the person knew more about my son’s condition before suggesting something, too.  Now, I’m certain I’ve been guilty of doing things like this, too.  It really does come from a desire to help.  Sometimes, though, when I’ve been to two or three doctor appointments that week alone, I just don’t need a random person suggesting something that I’ve either already tried, or know wouldn’t work.

So what should you do if your friend’s child has a more serious medical condition?  Ask your friend about it.  Listen to them.  And ask what would be helpful for them if they need some help.  It’ll mean the world to us.

The Fear of the Unknown

Receiving a diagnosis for an ongoing medical issue can be tough, depending on the diagnosis, but it also brings relief.  See, while the diagnosis may mean a whole new barrage of treatments and tests, the unknown, the “what if”s, are gone and a plan has taken their place.  There are new unknowns, especially if the diagnosis is something unfamiliar, but those are unknowns with answers out there.  I can look up the diagnosis, and talk to medical professionals about it, and acquire answers and more knowledge.  Without the diagnosis, I can only get speculation, and more questions to test.  I’d much rather face the diagnosis than the unknown.

As a parent, I’ve twice been in the position of having that unknown hang over me.  The first was with my third child.  I’ve already talked about the ordeal of having his tongue ties sorted, and of dealing with his food allergies.  Those weren’t his only issues, though.  When he was around five weeks old, and the ties had been revised and many of his allergens eliminated from my diet, I told my husband I was concerned because he was projectile vomiting during feeds.  That hadn’t happened before, and it surely wasn’t normal.  So we went to the doctor.  I had expected her to downplay my concerns, say it was just reflux and he would be fine.  Instead, she mentioned the possibility of pyloric stenosis, a serious condition that would require surgery if he had it.  She ordered an abdominal ultrasound for two days later.

The waiting was the hardest part.  We frantically searched for answers so we could be prepared for the possibility of our tiny son having surgery.  The day of the ultrasound came, with the staff members being calm and courteous to ease my own anxiety.  Then another wait.  The ultrasound was on a Friday morning, and I had no idea when we’d have the results.  His baptism was scheduled for the next day, and I needed to prepare for that, as well.

The baptism was scheduled later in the afternoon on Saturday; that morning, I received a phone call from the pediatrician’s office (our pediatric office is open 24/7, which has proved to be incredibly helpful).  The results were back, and the good news was that he did not have pyloric stenosis.  Cue the sigh of relief!  But. . . we need you to bring him in today for an appointment.  It turns out he had gallstones – his gallbladder was completely filled with them.

Infants can get gallstones?!  I had never heard of anything like that, and he had no risk factors for neonatal gallstones, as far as we knew.  The pediatrician outlined the game plan – we were being referred to GI, but because it can take awhile to get in there, she wanted to see us fortnightly until then.  She was also ordering labs to check his liver function.  I’d never had to take a child for a blood draw before, so I had no idea where to go, but she told us the various options.  We got into GI much sooner than she expected, within two weeks, so we didn’t end up needing the additional appointments at the pediatric office.

We finally had a diagnosis, and answers.  Well, we had some of the answers.  It wouldn’t be for another four years that we’d have the full picture (at least, I think we have the full picture now), but it was a starting point.  I gained an intimate knowledge of the pediatric specialist offices and joked Nemours was my second home.  Even though it was still a stressful time, having answers and a game plan made it much easier to bear.  I’ll take the diagnosis over the unknown any day.

Children with Food Allergies

By the time my 3rd child was 6-8 weeks old, I’d figured out that he was allergic or intolerant to:

Dairy

Eggs

Soy (including soy lecithin)

Beef (all bovine proteins, in fact)

Pork

Nightshades (tomatoes, potatoes, peppers, eggplant, etc)

In addition to that list, he couldn’t tolerate fatty foods (with the one exception of coconut), thanks to being born with gallstones.  Those first weeks and months were incredibly difficult, as I tried to learn completely new ways of cooking.  His allergies would’ve made it difficult to use formula, had I wanted to go that route (and it’s perfectly acceptable if that’s what someone wants to do!), but I was determined that he needed to breastfeed.  I remain convinced that it kept him from having gallbladder surgery as an infant, as I was able to control his issues with my diet.

Usually, though, when people would hear the laundry list of foods to avoid, they’d look aghast and wonder what on earth I did eat.  I ate lots of lean chicken breasts, which is quite ironic considering I refused to eat chicken for years after being served undercooked chicken twice as a teen.  I learned to adapt favorite recipes, for example by figuring out how to substitute eggs in baked goods with flaxseed.

I often use this one, because it’s easy to find.

I’d already had some experience with changing recipes and finding substitutes, because I’d learned of my own nightshade allergy during my second pregnancy.  It took me so long to figure it out because I don’t react until 24 hours or so later, so I just didn’t see the pattern until then.  At first, I was able to just avoid tomatoes, but the more I ate peppers the more I started reacting to them, too.  Now I can’t even eat grated cheese because of the potato starch on it.  I no longer miss nightshades (except for when my brother tells me about some great tikka masala he just ate!), and I’m thankful I figured out my issue with nightshades before having child #3.  It made it somewhat easier for me, because I was already aware of the resources available to find substitutes.

While caring for a child with extensive food allergies and intolerances isn’t easy, I’d like to encourage anyone in the same circumstances not to be disheartened.  I promise that it gets easier.  The first few months were the most difficult, as I missed cheese and learned just how many foods contain soy or dairy or potato.  I no longer buy most processed foods for those reasons, even though I no longer have to be quite as careful about it as he outgrows some of his food issues.

As time went on, I grew more adventurous with trying to make delicious treats for him so he wouldn’t feel left out.  I even learned to make a vegan pumpkin pie for him (use 1/3 c coconut oil for each egg the recipe calls for).  It is certainly nice that I’ve been able to relax on all the restrictions, so I can at least bake with egg whites and yogurt instead of being completely egg- and dairy-free.  But we also did well when I did have to keep all the restrictions in mind so that he wouldn’t react.

If you’re in the same boat, or know someone who is, feel free to talk to me.  Food allergies can feel so isolating, but you aren’t alone.  I found a local group of food allergy families, and it was so nice having that community.  I’m also happy to give recipe ideas if you aren’t sure how to substitute some things, though I will say that I never tried to really replace tomatoes and peppers.  I find the no-mato sauces and such to just not be the same, and I’d rather forgo it completely than to get something that doesn’t quite meet my expectations.

What Is That?

What is that?!

That’s the usual response I receive when it comes up that my son has cyclic vomiting syndrome (cvs).  It’s not something many know about, including some doctors.  If you’ve heard of it in the news, chances are you’ve only heard about cannabinoid hyperemesis syndrome, and how that is sometimes mistaken for cvs.  Beyond that, you probably haven’t heard about it at all.

So what is it?  It’s a syndrome where a person will vomit uncontrollably every few minutes.  Such episodes often require IV hydration and medication in order to get it to stop.  Everyone with cvs has different triggers that will bring about an episode, and different things that help to prevent or stop episodes.  There are different causes, though there is a genetic component.  For my son, it appears that his cvs is caused by a deficiency in the amino acid carnitine.

I had never heard of cvs until we were seeking diagnosis for his vomiting episodes.  It can take years to get a diagnosis, though we were lucky in that it only took a bit over a year.  His paediatrician quickly suspected an inborn error of metabolism, and wasn’t far off with that.  Cvs is a diagnosis of exclusion, though, which means that everything else must be eliminated before a cvs diagnosis can be given.  This means he had various blood tests, abdominal ultrasound, upper GI series, x-rays, etc, in addition to the numerous ER visits and hospital stays.

My son’s episodes started when he was 4.  He then didn’t have another episode for a year, but they then occurred more frequently.  There was one summer where he was in the ER every two weeks as we struggled to get a handle on it.  In that time, we kept a journal and determined that his triggers were heat (and we live in an area where it’s hot much of the year), dairy, chocolate, overexcitement, and illness.  If my other children got a bad cold, they got over it.  If he got it, he went into an episode.  So if I avoid you when you tell me you or one of your children is ill, don’t take it personally – I’m just trying to make sure my own child doesn’t end up in the ER.  Every time he does have an episode, it can take about a week for him to be back to normal.

The episodes have become much more manageable and less frequent now, thanks to his doctor realizing that, for him, the ultimate cause is a genetic carnitine deficiency.  Between supplementing with acetyl levocarnitine and his other medications, he’s managed to make it over a year without an actual episode.  There are still times where he’s needed to just veg out because he’s nauseated and trying to avoid an episode, but it’s much better than when the episodes started.  Because of all of this, though, there are times when I say we can’t do something, because I can tell it’s getting to be too much for him.

Other people with cvs have different triggers, and more or less success with the medications and supplements.  Many times, those with cvs aren’t believed when they do seek help.  Some are accused of being drug-seekers (in part because of the more recent coverage of cannabinoid hyperemesis syndrome), others of being attention-seekers.  Many find it difficult to continue school or hold down a job, yet also have trouble getting disability.  I’m thankful my son’s cvs seems to be controlled for now, and I pray that continues.  I also hope that others learn more about this and I encourage everyone to visit the CVSA website.