On Peanut Allergy and LEAP – Why The Conflicting Emotions Among Allergy Parents?

I have been anticipating the LEAP study findings since hearing it was in progress almost 3 years ago. Our son was diagnosed with a peanut and cashew allergy in 2012. In the initial shock of the diagnosis, I started looking for any answers I could find.

WHY did he have this allergy, and what could we have done differently? Was it my fault for eating my body weight in peanuts while pregnant? What about while nursing? Was he too exposed? Underexposed?

When I stumbled across it, I was disappointed that the findings had not yet been published. If you aren’t familiar with the study, visiting the About LEAP page will explain the design better than I can. In general, the LEAP study looks to answer the question of whether avoidance of nuts or consumption of nuts at an early age makes a person more or less likely to develop a peanut allergy.

The site has been bookmarked on my computer since 2012. I’ve checked back often to see if there was any indication of when they would publish their findings. Results were expected as early as 2013, but it wasn’t until February 2015 when results were released.

I’m not the only one who anticipated the study, as is evidenced by the intense media coverage it is receiving in the wake of its release.

When the results were released, I read them with anticipation and excitement. You could check out the summary of results on the LEAP website but I would recommend reading the New England Journal of Medicine article for yourself. All children included in the study were classified as high-risk for a peanut allergy if they had an existing egg allergy and/or severe eczema, and no strong preexisting peanut allergy (strong was evidenced by a skin wheel (or hive) from skin testing larger than 4 mm).

In the LEAP study, of 834 potential participants, 76 had wheels over 4 mm before the study began and were excluded. This means these children were 4 to 11 months of age and already had significant allergy (See Figure 1 – Methods section of the journal article). 76 may sound like not very many, but is close to 10%, albeit from a high risk group of children sought out for inclusion in the study. Groundbreaking study or not, LEAP may be of little help to parents whose children are high-risk for an allergy and developed a strong peanut allergy before they were 4-11 months of ageWhile we embrace that knowledge about peanut allergies is increasing, we are still waiting on and longing for answers as to why these children are at such high risk in the first place.

But there is certainly valuable and solid information here for those children who are not highly allergic before the age of 4 months.

As summarized on the LEAP website, the study yielded these exciting results:

Of the children who avoided peanut, 17% developed peanut allergy by the age of 5 years. Remarkably, only 3% of the children who were randomized to eating the peanut snack developed allergy by age 5.   Therefore, in high-risk infants, sustained consumption of peanut beginning in the first 11 months of life was highly effective in preventing the development of peanut allergy.

A difference of 14% of children developing or not developing an allergy is significant. It means if your child doesn’t already have a strong early onset allergy, but is at risk of developing one, giving them peanut products at an early age may (no guarantees) help prevent an allergy. And, if they have a minor allergy (wheel less than 4mm), they may still be helped by feeding them nuts, although would require supervision and care of a medical professional.

Results like these give parents something they CAN do to help their high risk child. To give them their best shot. There is no mistaking that the results hold very important truth and tangible results for the right circumstances.

It is going to change the recommendations. It is paving the way for further study as we speak. A biochemist by training, MORE information is always a good thing, right?

Not necessarily.

The study leaves me with conflicting emotions. I feel like I’ve been on a roller coaster all week.

When you look at the allergy community, the study has received acclaim, praise, frustration, and resistance.

Why so emotional?

  • Too little too late: Information is power, but now my daughter is 2 and has never eaten a peanut. We are a peanut free household. Our allergist told us she has a higher chance of developing a peanut allergy than other children because of our son’s allergy (a.k.a. our family genes). We were told to use caution introducing peanuts. When I asked if it was OK to wait until her 2nd birthday, there was no indication it was a bad idea. According to this study, we may have now waited one year too long to do the only thing that has been shown to possibly prevent development of a peanut allergy. So, although the study is relevant, groundbreaking even, the findings may not be able to help her. Yet…we pray she may never develop a peanut allergy.
  • We may be resistant: Defensive even. Information published on the internet can be simply false, or taken out of context. The first statement I saw did not mention the LEAP study name, but stated that we should ALL feed peanuts to 4 month old infants to prevent peanut allergy. It was out-of-context and missing important cautions and caveats. Alarming – and dangerous. The post left me feeling skeptical and defensive. It is my duty to read information for myself, and to draw educated conclusions with an open mind. It would be a grievous error to rely on someone else’s write-up, emotions, or opinion. We should be excited that people are spending their time studying peanut allergy and to read their findings, whatever they are. When I actually read the entire LEAP study, I agreed that this study is impressive, important, and demonstrates something we didn’t already know about peanut allergies. It is nothing to scoff at and needs to be taken seriously. But it needs to be viewed and written about within the proper context.
  • We feel attacked:  There are some who think we caused our children’s allergies and aren’t afraid to share it all over the internet.  I read this article and it describes very well how parents can be bullies too and requests empathy – it is well worth your time to read. But  the LEAP study does not say parents are to blame. It says feeding children peanuts early may help, but it will not help all of them. There is no way to go back and see which child would or would not develop an allergy. And guess what? Many of the children in the allergy community had life-threatening reactions before 4 months. Their faces swelled up and maybe they stopped breathing after being kissed by peanut-butter tainted lips. Many children had severe eczema, or reactions to breast milk after their mother ate peanuts.
  • We feel guilty: Although the LEAP study does not point blame, we blame ourselves. We cannot help it. Finding out now that feeding our children nuts at an earlier age could have even POSSIBLY prevented our child’s peanut allergy brings a disturbing and painful pang of mama-guilt. It feels awful, warranted or not. No one else needs to point a finger at us because we’ve had it pointing at ourselves since day one. We wondered if those nuts we ate (or didn’t eat) while pregnant made this happen. We wondered what we did wrong and have assumed we did something wrong.
  • We are frustrated: The LEAP findings contradict how I and many other parents fed our children at early ages. We followed recommendations of trusted allergists and pediatricians. Many of us were aware of food allergy dangers and consulted reputable sources like the American Academy of Pediatrics and American Academy of Asthma and Allergy. Avoidance was recommended in 2000. Recommendations were slightly modified in 2008 and furthermore in 2013, but that doesn’t mean all pediatricians and allergists were on board. Infant nutrition and care books were not up to date. We did research these things, but just didn’t know what we and the medical community did not yet know.
  • We have questions: While some answers have come to light, 100s more have popped up in their place. There is much left to learn, and we don’t fully understand what this all means yet. The LEAP study is great, but long term effects are yet unknown (awesome that they are continuing follow up in the LEAP-ON study as we speak).
  • We are grateful: In wake of the amazing developments of potential therapies like the Viaskin(R) peanut patch, the LEAP study findings, and more, science is making huge advancements in understanding how to help the allergy community. We are grateful. We are grateful for parents and children in the clinical trials and studies. We are grateful for those investing their time, careers, and funding. The knowledge is increasing, and the understanding being gained is invaluable. It is bound to change the allergy world forever. And soon. Thank you.
  • We are hopeful: Even if the LEAP study shows results that are too late for many of us to use the information, those having babies now will benefit. We hope allergy rates will go down. We don’t want ANY child to have a food allergy, even if our child does already. We hope the therapies will be effecive. We hope for science to find answers, causes, and cures. We anticipate these things and cling to hope for tools that will change our children’s lives.
  • We are forgiving: We are also frustrated that with all the new findings, there is still no concrete way to prevent infant peanut (and other) allergy. For many of us, even if we’d known and fed our child peanuts at 4 months, it may not have changed anything. We accept where we are now, where we’ve been, and instead of pointing fingers we look forward to future advancements. We forgive ourselves for our part as we forgive the medical community who is learning about allergies with new revelations, just as we are. And, we choose to forgive the community of ignorant people who feel the need to blame us.

 

It is important to note that not everyone within the allergy community has these feelings. But the care of our children and loved ones, and their safety is so important, that emotions are bound to run high. If it seems like some of us are conflicted, we are.

I am.

The New Mama Blessing Jar

New Mama Blessings Jar FINAL

Today is the long-anticipated day.

My most dear friend, in all the world, is having her first baby. It makes me so happy I think my heart might POP!

Today.

Right now – well, I hope right NOW…but these things sometimes take time…

Upon hearing she and her husband were heading to the hospital last night, I got so excited. I’m amazed I even slept a wink, but am glad I did. In fact, I’ve been SO excited, I can’t sit, stand, or well, BE still. Lucky for me, I had a meal to make and bring to another special family who has also recently had their FOURTH baby (Amazing!).

It is good that I had something productive to keep me busy (kids are napping/or at preschool)! However, I finished the meal this morning so on the way to preschool, the kids and I stopped to pick up a few items to make some small gifts for the new mamas in our lives.

Whether it is your first time, or fourth time, being a new mama is a BIG job. You are in demand, yet you also have the great privilege of soaking up every single newborn baby sigh and snuggle.

With my extra energy and time (well, kind of free-time, I was too distracted to do much else), I thought I’d make a couple of gift jars. I made two. One went with the meal to our friends this afternoon and I the other will be shipped to my other friend along with a couple other small things I’ve been saving for this very momentous day.

The idea for a New Mama Blessing Jar started when I stumbled across cute scripture cards on the ThrivingHomeBlog.

cards wrapped

The downloadable PDF file gives 25 scripture verses surrounded by playful colors and patterns. They are cleverly titled “On the Job Meditations-25 Verse Cards For Moms“. I’m a believer that God’s word is much better that any I can come up with – what better gift than to give scripture to encourage a new mama?

My husband and I have been eating Mason Jar salads at lunch for a few weeks. I bought a case of mason jars when we started, so as I was packing our lunches for tomorrow, I noticed how the scripture cards would fit perfectly in a jar. The idea took off from there. The great thing about a jar is you can fill it with all kinds of little things that can bless a new mama, without going overboard, and every jar you make could be different and suited to the friend you give it to.

New Mama Blessing Jar Contents:

  • Dark Chocolate bar – Trader Joes (lower on sugar, and great for just a little treat)
  • Milk Chocolate Caramel Ghirardelli  squares – who wouldn’t want one?
  • Turkey sausage stick – Target (a little protein for a nursing mama)
  • Decaf Good Earth Tea – warm and relaxing
  • Dry Shampoo – if you haven’t used dry shampoo, you are missing out on a huge time-saver. Every new mama needs some, trust me. This way you can quickly freshen up when on the run, overslept, or hardly slept. Rockstar Dry shampoo is my favorite travel size you can get at Target. At just under $3, it lasted a long time, and worked great
  • Mints – see dry shampoo – quickly freshen up your breath when someone unexpectedly rings your doorbell
  • Chapstick – when you need it you need it, take it from an addict. Usually you’re holding a sleeping baby or nursing and can’t reach one when you realize your lips are dry. An extra one nearby is just a good idea
  • Gift Card – because the baby deserves something too, just for being born (but the mama can use it for herself if she wants to)

Thankfully, everything fit in the jar. It just needed a label or something to make it fun. I made a label for the jar and a contents list:

New Mama JarJar contents

Then it was time to seal it up, and give it away – preferably with a meal (because when someone has a baby, YOU bring them food).

If the contents of these jars doesn’t suit your needs, other ideas to customize your own New Mama Blessing Jar include: small packs of nuts or crackers, hard candy, WISP disposable tooth brushes, travels tissues, hand lotion, twizzlers, nail file and polish, hair bands, and more…

What is your go-to gift for new mamas?

Infant Silent Reflux is NOT Silent – Our Experience Navigating Reflux Treatment

silent reflux is not silent

This is the second post in a series on Infant Silent Reflux. Before reading this, it will be helpful to read about Our Search For An Answer To Our Baby’s Cries, which explains what Silent Reflux is, and our path to diagnosis.

The only thing I’ll repeat from the previous post is this – Let me be clear: This article is not a complaint about that first year. This is how life was for our family. I write this to share with other parents whose children also hurting.  Sharing our experience has two purposes: to help hurting children, and to give encouragement to their parents. It takes a village…

Doctors diagnosed our son with silent reflux at 7 weeks. The pain had a name that made no sense – Infant Silent Reflux is NOT silent.

Once diagnosed, the first treatment step was medication. We started Zantac (Ranitidine).  A clear, strongly peppermint flavored liquid that made me sure he would hate peppermint forever. Every dose was a battle – it was almost impossible to get him to swallow it, no matter how many times I blew on his face or how loud he cried.

We saw mediocre results. With painful reflux symptoms causing all night crying from day 1, and treatment not beginning until week 7, it was like throwing a bucket of water on a forest fire. He still had all the same symptoms mentioned in the previous post but the medication seemed to take the edge off and feedings were a little more manageable at night. At least, for a little while – Zantac dosage and effectiveness is weight-dependent, so after a couple of weeks, it stopped working because he was growing so fast.

Our doctor recommended changing my diet to see if we saw additional improvement. I kept a food journal. I stopped eating all dairy (yogurt, cheese, milk, you name it), and anything citrus or acidic (tomatoes, oranges, berries, peppers, etc.). We saw what we thought to be limited and gradual improvement, but when I tried to add these foods back into my diet, he got worse. It was clear that my diet, dairy especially, mattered. So, I refrained from eating quite a few things for a year. I learned later that dairy takes a very long time to leave your system and even longer to leave theirs. If dairy is adding to the symptoms, you may not see marked improvement for a month. If you suspect it – cut it for 4 weeks and then see what happens when you add it back in.

A quick note about Zantac before continuing: Most of your stories will end with Zantac: A couple of years later when our daughter showed symptoms of reflux at 4 weeks, we knew exactly what it was. We took her in right away and the doctor agreed. She was on Zantac a short time, and it was enough to allow healing and the muscles to tighten and prevent further damage. She has never struggled with reflux again and will be 2 in March. From the families we know who have struggled with reflux, very few children go on to need additional medication, and most are entirely off of all medication by the age of 6 months. Of approximately 30 families we’ve talked to so far, I know of only 4 who have continued medication through 1 year, and know of only two other families whose children have had reflux as a toddler like our son.

I wish I could say that Zantac and modifying our diet was the end of our son’s story with reflux, but it isn’t. We continued monitoring my diet and increasing his Zantac dose as needed until the week before I had to go back to work (11 weeks).

Then things got crazy.

The reflux was out-of-control. The crying was unstoppable. The Zantac dose was maxed out. They wanted to switch him to Prilosec suspension (Omeprazole). We weren’t real excited about giving him more medicine since the first didn’t seem to help much. The doctor explained that while Zantac is a histimine-2 blocker, Prilosec is a proton-pump inhibitor. Both reduce acid produced by the stomach, but through different mechanisms in the body. In our doctor’s words, if a person doesn’t respond to Zantac, they often respond better to Prilosec. It gave us hope and we were willing to give it a shot.

The medicine tasted like chalk (so, of course, he didn’t like it). He was supposed to improve measurably after one week on the medication.

He did not.

My first week back to work, my husband and our family took turns watching him during the day. Our son wore those loving arms (and backs) out! He was supposed to start daycare the following week…now what? We were terrified to leave him with someone else, and terrified for the provider who would have not only him, but a handful of other children needing her attention. There was no way a daycare provider would be able to handle him along with the other children in her care.

We took him back to the doctor. He had an upper GI. As he choked down the barium, it was confirmed he had reflux but no physical twist, turn, or abnormality requiring surgery. Good news, but there was no indication as to WHY he had reflux. But, knowing reflux was present validated the reason we were pumping him full of the max dose of reflux medication.

On the way home from the upper GI, I refilled his Omeprazole prescription. I was shocked when given a completely different looking liquid, with different labeling than the last bottle; same medication name, but different consistency, color, and storage conditions. It still tasted like chalk, but the new bottle worked far better. Right away.

The daytime became manageable.

I took the remainder of the first bottle and the new bottle back to the pharmacy and spoke with a pharmacist. They admitted the first bottle should have had the same labeling as the new bottle, but would not admit it was made incorrectly. Honestly, to this day I have no idea if it was even the right medication in the bottle or not. I now ask plenty of questions when I pick up medication at the pharmacy – there is no guarantee the medication you receive is correct (how scary is that?).

We switched pharmacies and filed a complaint at both the local and corporate level.

At 13 weeks, our son went to daycare. We were blessed beyond measure by an experienced, patient and kind woman. He was loved, well cared for, and she never complained that he was difficult.  Not once. No words can ever express my gratitude to her for how she cared for him. She would tell me, in a matter-of-fact-way how he had done each day, never with any indication that she was burdened by him when he had a rough day. And he had plenty of rough days.

Although the Omeprazole, correctly made, worked leaps and bounds better than that first bottle, we noticed that towards the end of every bottle, our son’s symptoms were worse. Then, every time we opened a fresh bottle, the medication seemed to work better. After tracking it closely, it seemed like our 30 day supply worked great for 2 weeks, then gradually decreased in effectiveness over the next 2 weeks.

As a biochemist, I am familiar with stability testing. I suspected a stability issue and asked the (new) pharmacist about it. She said it should be stable, but if he was on the edge of the dosage, we might see a gradual decrease over time. She was willing to break our prescription into two, as an experiment. We paid up front for a full 30 day supply, but she gave us half of the volume. 15 days later, we then picked up a freshly prepared bottle, with the remaining volume from the 30 day prescription.

Breaking the 30 day supply of Omeprazole into two fresh bottles showed measurable improvement. We know of at least 4 other families who have seen symptoms increase over the course of a 30 day bottle who have also switched to a 15 day supply. While our evidence of a stability problem is purely anecdotal, it has helped more than just our child. Our pharmacist could not continue breaking it into two because of billing issues since the prescription was written for 30 days. She suggested we get a 15 day supply prescription from the doctor. We were happy to pay double the co-pays for mediation that actually worked well the whole time.

And so we continued on. While the days were going well, night-time was another story. From 8 pm until morning, it was hard. I’ll describe the nights in a post dedicated to sleep in coming weeks. In the meantime, if you are a sleep deprived parent of a hurting child, my heart goes out to you. I wrote a post when thinking about you, months ago. Sleep deprivation is serious business. You are not alone. Sleep did eventually come to our house. It will come to yours as well. Bless you.

While sleep eluded us for a long time, our son’s symptoms did gradually decrease over the course of the first year. Even though he didn’t sleep much at night, he screamed less and less, and with decreasing intensity as time went on. By 12 months, he slept through the night for the first time, and by 15 months we were able to wean him off of the medication and he eventually slept through the night.

Why was our son’s case so severe? I’ve asked several pediatricians, an allergist and a Gastroenterologist. No one knows for sure. But there are a few things they all agreed may have contributed:

  1. He had symptoms from day 1, which we learned is highly unusual. In fact, most doctors say babies don’t even have stomach acid at that point. I don’t know what this means, other than his case is different from others
  2. There were dietary issues we knew contributed (dairy, citrus), but there were more that we didn’t know about. At 15 months, we discovered an unknown peanut and cashew allergy (and he had a mama who was eating bucket loads of nuts and peanut butter while avoiding dairy while nursing…sigh…knowledge truly can be power)
  3. Since he had symptoms early but was growing fast (not failing to ‘thrive’), the doctors failed to treat the pain early, and we failed to persist in making them treat him
  4. He grew so fast and was treated so late, it seemed like we were always behind the proper dose of Zantac for his weight. It just wasn’t enough
  5. The Omeprazole first given to our son at 11 weeks was certainly stored improperly (room temperature vs. required refrigerated conditions that likely affected stability), and possibly made incorrectly to begin with. This means our son was basically un-medicated (or at least improperly medicated) at the point when his symptoms had peaked, requiring Omeprazole to be prescribed in the first place. I am convinced this snafu caused additional damage and lengthened his recovery. Add in the apparent stability issues with the 30 day supply and it wasn’t until 6 months before he was treated with full strength Omeprazole on a consistent basis.

Look for future posts that will describe our experiences with toddler reflux, reflux sleep (or lack-of), and nursing. If you found this story to be like yours – don’t hesitate to get your child help. If you need more information sooner than the next post, email me (thisgratefulmama[at]gmail.com). I’m happy to share anything I know and help in any way I can.

22 Practical DO’s And DON’Ts To Show Love On Valentine’s Day {and Every Day}

22 DOs and DONTs

Valentine’s Day is not my thing. While I will never poo poo a chance to go on a date with my husband, I could care less about going on February 14th, when the restaurants are packed. I’m not big on fancy chocolates (and basically none exist that meet the nut-free criteria to enter our home), or flowers (ah-choo!). By far, the best part about Valentine’s Day paraphernalia is the Gobstopper Sweet Hearts that show up in stores, right after New Years Day (oh, man we just can’t survive even a week without a section in Target devoted to the next Hallmark holiday).

Although the actual day is no biggie to us, we always make a point of going on a date on another night in February. I’m happy to have dinner on a less-crowded night and to not be forced to find something in the color red to wear. As busy parents, we can embrace and use any reason to go on a date and are happy to oblige the ‘love’ in the air by going out without our kids.

But our date is more about us than a pink and red ridden Hallmark holiday.

Whether you jump for joy at the thought of Valentine’s day or feel like it is no big deal, Valentine’s day (like any day) IS a great time to focus on the one you love, and to make an extra effort to make them feel loved. While this is written with marriage in mind, these are simple ways to love or not to love in any relationship.

22 Practical DO’s And DON’Ts To Show Love On Valentine’s Day {and Every Day}

1. DO acknowledge that Valentine’s Day is a reminder to celebrate your relationship, whether you like the holiday or not

2. DO NOT see a movie that isn’t about love at all – take the excellent advice on scissortail SILK blog and honor your spouse with your choices about what you watch and read. Play a game, sit and talk, or find another way to entertain yourselves

3. DO tell them how grateful you are for the way they love you and how they provide for and love your family

4. DO NOT cop-out and buy a huge heart-shaped box of chocolate unless nougat filled chocolate is what your spouse would really be excited about

5. DO kiss and hug your spouse at least 5 times more than usual, and I don’t mean a peck on the cheek

6. DO NOT just sign your name to a Valentine’s Day Card…write at least a paragraph to express what they mean to you

7. DO tell your kids how much you love their mom/dad and be clear that your spouse is your valentine, not your kids

8. DO NOT assume your spouse doesn’t care about Valentine’s Day just because you don’t or skip planning something if you know they want to celebrate it

9. DO volunteer to give a back or neck rub, or do a surprise run through Starbucks drive thru while you’re out and about (hint, hint!)

10. DO NOT be too busy making your child’s Valentine’s Day special to do something special for your spouse (even if it’s something small like ea special meal, card, small gift, coffee date)

11. DO put the kids to bed 30 minutes or 1 hour early and use it to spend quality time together

12. DO NOT spend your evening (or day) on your phone, laptop or tablet. Put the internet DOWN!

13. DO compliment them and those special characteristics that you fell in love with way back when and reminisce about your first date, engagement, etc.

14. DO NOT complain or grumble in any way about what you’d rather be doing on Valentine’s day

15. DO that chore or task that neither of you likes to do and do it joyfully before they can (in our house, it’s taking the Diaper Genie out to the trash…disgusting!)

16. DO NOT speak ill of them to your girl friends or guy friends. Defend them and speak well of them

17. DO something special about a week after Valentine’s day, and every week thereafter (email at work to say you love them, note in their lunch, extra kiss after they get home)

18. DO NOT eat too much, drink too much, or do too much of anything that detracts from the night your spouse will have on your date

19. DO snuggle, hold hands, hug, kiss, and so on…

20. DO NOT have expectations. Put away those expectations and be happy to spend the day together wherever you are, whatever you are doing

21. DO treat love as a choice. Do it when we are happy, sad, mad, silly and cranky

22. DO (or DO NOT) do these things every day, not just today. Love each other in thoughtful ways every day

 

Happy Valentine’s Day!

Wait for it…Teaching A 4 Year Old To Wait Is No Easy Task

Teaching A 4 Year Old To Wait is No Easy Task

Let me tell you about a regular conversation I have with my 4-year-old son. This particular conversation was about water, but you could insert any subject and we have this same conversation, every day, multiple times.

  • Him: {Mom, can I have some water please? With ice}
  • Me: I like the way you asked, I’m changing your sister’s diaper and then I’ll get you some water
  • {Sigh. Mom, I need some water!}
  • Let me throw this away and wash my hands so they’re clean to get water (at the kitchen sink by his cup)
  • {Crying. Alligator tears. I need some water now!}
  • I asked you to wait. What does wait mean?
  • {I don’t know}
  • Wait means YES, but you have to wait a minute (I give him a hug)
  • {Oh. Sniffle. Can I have some water now?}
  • Here is your water. Please remember that next time, wait means yes. If we can’t learn to wait the answer might be no next time. It  takes me longer to get water when I’m trying to calm you down instead of getting water
  • {OK mom, I’ll remember}

So after that conversation, you’d think the next time he needs something when my hands are being used to make dinner, vacuum, rock his sister, or…it wouldn’t go that way. Right?

Nope.

This conversation repeats, with slight improvement depending on how soon it occurs after the last conversation. But day after day we have  the same conversation over something else – a snack, some water, another snack, help with socks, yet another snack, finding a toy, you guessed it – another snack (as you can see there are hangry tendencies in this house).

Why is it so hard for him us to wait?

Well, why is it so hard for me to wait? For you to wait? Sometimes I think it’s because we’re out of practice. We certainly wait for things, but less than we used to because of technology. Everything is faster. Want to know something? The answer is at your fingertips. Gone are the days of finding an encyclopedia or dictionary, and here are instant searches on Google.

In general, lines are shorter and faster because the person at the end of the line has technology at their fingertips too. Or, skip the line altogether and check yourself out. We no longer call someone’s home answering machine and wait for them to get home to call back – we reach them wherever they are. This attitude of instant gratification makes traffic more unbearable, because there is no escape, even if we  weave back and forth between lanes.

These conversations with my son can test MY patience as I wait for him to learn this lesson (see, waiting is hard!). It isn’t fun hearing him be upset. Plus requests for basic needs like food or water are things I won’t be withholding for long at all (well, unless it’s a request for candy…after he asked for it 1000 times after the holidays, we told him that until he stopped asking, the answer is no). But being impatient with him doesn’t teach him to wait, it does the opposite. So, I’m expectantly waiting on the day, trying to be patient, when this waiting lesson will click.

If we can’t help him handle the little stuff to which the answer is yes-but-wait, how can we teach them to wait for the things that aren’t as easy? As adults, we often wait for things that take longer, and may not have a YES answer at the end. We wait for prayers to be answered for the hard stuff – pregnancies, test results, healing, raises, and job interviews. We wait for answers we may not even want to hear, but we wait nonetheless.

Truth is, children and adults all need practice waiting on the easy stuff so when serious moments come, we are able to wait with grace, and hopefully without driving our families crazy. Even though I feel like a broken record, persistence in teaching waiting continue. This lesson must be learned so he can be a functioning, patient adult. So even though I know we’ll have yet another conversation on waiting today, and tomorrow, I need to be patient with him and go through it again. He needs practice at mastering the short wait – for something trivial he knows he’ll get in the end.

For full disclosure, this waiting thing doesn’t always look as it should on me either. He hears me sighing as I hit those brakes in the car. And he sees me check the clock on my phone as we are waiting in line at Target (for all of five…whole…minutes). I’m not always good at waiting either. Waiting is not the norm. It isn’t expected that the line will be long when I had just enough time to run in and out. It isn’t expected that traffic will back up long after rush hour ended. Instead of accepting that the wait is just a delay, not an end to my plans, I too, often sigh and complain, in a rush.

And what does rushing things do? Usually nothing good. If our son is impatient, I tend to make him wait longer, or change my answer to no. Trying to rush things as adults often yields similar results and often, if we had just waited patiently, things would have gone a lot smoother.

I need to work on my patience in waiting if I want to demonstrate and instill this skill in our son. No more sighing in traffic or acting annoyed in lines. These are trivial in the big picture and if I can’t master these, how can I demonstrate waiting in the big issues?

So we’ll focus on helping him with the yes-but-wait things for now. The bigger, more difficult waits will come with time, and without my help.

My son is into traffic signs and wants to know what they mean. He asks me all kinds of questions while we are driving and usually knows when it is our turn to go. This week, we talked about the Yield sign and how even though there is no stop sign or stop light at the roundabouts by our house, we yield to those in the roundabout before entering it. Waiting is kind of like yielding to traffic. Your turn, your answer, your result…will come. You may have to wait for longer than you’d like to, but in the end, you always get to go, even if it isn’t in the direction you’d hoped. A wait is a delay to an outcome, but there will be one. While it isn’t true that all of life’s waits end with the answer YES, they do usually yield an answer.

It is time to stop being impatient with the timeline, and to stop trying to rush this very important lesson. I need to wait for my son to learn to wait. We will prepare him for the tough waits. We will keep teaching our son (and soon our daughter) that the answer to much of life’s waiting is YES.

It just means you have to wait for it…

Infant Silent Reflux is NOT Silent – Our Search For An Answer To Our Baby’s Cries

silent reflux is not silent

I think it’s time to do a little series on our experiences with infant and toddler reflux (GERD).

I’ve been shocked over the past few years by the number of people who have asked questions about our experience with our son and daughter. I rarely go more than a month without reflux coming up in a conversation, email, or phone call – because a beloved child is hurting.

These friends, family and acquaintances want answers. They need someone to validate their intuition that something just isn’t right. They want hope – someone to tell them that a doctor was able to help our child and will be able help theirs. They want to know what questions to ask.  Sometimes after we talk, the conclusion is that their child’s symptoms do not sound like reflux, but all-too-often, what is described sounds like reflux.

Regardless of the situation, I always point them towards going to their doctor. I am not a doctor. I can only share our experience and encourage you to get help for your child if you think something is wrong. Please check with a medical professional to confirm whatever you suspect.

When I started this blog, I thought reflux would be one of the first topics I’d write about. But in truth, I’ve held back on posting about our experience.

Why?

It’s complicated. It is painful to recall those moments when we could do nothing to console our hurting child. And because there is SO much information about our experience, it is hard to organize my thoughts. Oh, and it is hard to remember details out of the haze that was one year of severe sleep-deprivation.

But, most of all, I paused because I want to be sure what I write honors our son. Sometimes when I share with other parents, they tell me how sorry they are that he was a ‘difficult’ baby. But it wasn’t HIM that was difficult. What was difficult was that he HURT.

Sure, it was a hard first year for all of us. And he did cry. A lot…all night long, night after night.  But he was a beautiful, sweet baby boy. He just hurt. A hurting baby can’t help themselves so they express their pain through tears. Silent reflux is a terrible and painful thing. His whole body told a story of pain as it tensed, writhed, and screamed until his voice rattled and he had no air and was gasping for it.

But he was our baby, our son, an immense joy and blessing. He smiled, giggled, and talked – melting our hearts. It was just that those moments were less frequent and all-too-brief because they happened between bouts of pain. But those special moments were no less profound or fulfilling, and are cherished.

Let me be clear: This article is not a complaint about that first year. This is how life was for our family. I write this to share with other parents whose children also hurting.  Sharing our experience has two purposes: to help hurting children, and to give encouragement to their parents. It takes a village…

If you are reading this because your child is hurting, I hope this points you in the right direction. If this helps just ONE family, it has achieved its purpose. I hope this encourages you – whether your child has symptoms of reflux or another source of pain, know we understand what it means to care for a hurting child. I’m glad you’re here. Looking for answers is a great place to start helping your child.

Today’s post is our story of searching for an answer. Many of you have a similar story, only after diagnosis and starting medication, it will be the end of your story. The medication will reduce acid and help your child’s muscles heal and tighten. Your story will be short – I hope and pray it is! Our story did not end there. I will tell that part of our story at a later date, but sharing how we go to the point of identifying the problem will help the most people, so I’m starting here.

Our story:

We named our son Aiden. We loved that Aiden means “little fire”.  Never in our wildest dreams did we think he’d be born with a fire of acid in his belly that would cause him pain.

He screamed all night long, inconsolably, from the first night in the hospital, through most of the next 10 months. In the first weeks, it was my mom who observed that even when sleeping, he was never relaxed; his fists clenched, his back arched, and crying out in his sleep. Although he certainly had moments of calm, especially in the early morning when he hadn’t eaten yet, they were short and infrequent. And the older he got, the worse it got.

As a first time mom, I knew babies cried. But what did I know? Who was I to say that our child cried too much? It felt like it was saying he wasn’t good, or wasn’t normal, or that I wasn’t equipped to be his mom. At his one and two week appointments, I told his doctor I was concerned about how much he cried. But I was unsure of myself and my assessment – especially when my son was bafflingly calm EVERY time we entered the clinic. So weird! I didn’t go into detail, and didn’t really explain that he cried ALL night long, or that feedings were a disaster. I figured I was doing something wrong nursing him and that like all the moms told me…at some point soon, ‘it would click’.

Since Aiden was growing (99% on the growth chart the first 6 months), the doctor wasn’t concerned with how much he cried. He explained to me that some babies cry, a lot. Perhaps it was colic. He told me colic often has no explanation and goes away on its own after peaking at 6 weeks. I felt like he was telling me I was over-reacting. I doubted myself and didn’t press the issue.

But in reality, it was an understatement to say that we were concerned. Something did not seem right and I couldn’t accept there might not be an answer.

Night after night, at 3 am, as our child screamed in my arms, I cried with him. I prayed for help, for sleep, for healing, for silence. I was his mother, helpless to soothe him, even with nursing. During the day, he wanted to nurse endlessly; he would have nursed for 10 months straight if that was possible for either of us. I learned later that he was self-medicating; soothing his throat from burning. At night, nursing was different. Frantic. He would be desperate to eat, only to push away and scream, writhing in pain. It was awful for him. And for me. Most night nursing sessions took hours. My poor husband would find us both crying in an actual puddle. He would graciously and lovingly scoop him out of my arms and take a shift pacing the house.

The nights were LONG.

No amount of walking, rocking, singing, shushing, dancing, swaying, swinging, swaddling, or standing still made a difference. The only thing that seemed to give him pause was what I’d call the deep squat. UP, down, UP, down, UP, down…I did more squats after giving birth than I have my entire life. And so did my husband. Squats would soothe him for a while as he’d look at us, wide-eyed…but as our legs, and back and arms gave out, so did the silence.

Not a really viable solution – you can only do so many squats.

I researched all kinds of causes of colic. I remembered a co-worker mentioning their child had acid mild reflux and required medication. I had never had heartburn, so it was hard for me to understand how it could be this painful. And, he never spit up – ever! But I remembered stories of adults with heartburn thinking they were having a heart attack and spending the night in the ER. When I first experienced heartburn during my second pregnancy, I realized just how awful my son felt for that entire year. It broke my heart all over again.

I researched colic, hoping to find a reason for his cries, and was often pointed towards infant reflux. But almost all references to infant reflux symptoms at that time noted that babies with reflux refused to eat and lost weight, causing failure to thrive. Our son didn’t spit up. At the time, I didn’t understand that at night as we struggled with nursing, he was refusing to eat.

Information on silent reflux wasn’t really out there – or at least, I couldn’t find it.

Finally, I found one mom’s account of her son. Their story echoed our own (I wish I could find it to thank her!). Her son, like ours, was not failing to thrive, and was also bafflingly calm in the clinic. After refusing to accept his symptoms were colic and could not be explained, she took him to other doctors and found someone who agreed with her. They diagnosed him with silent reflux. I had never heard of it.

Silent reflux is when your child has acid reflux but never spits up. Acid comes up from the stomach because the sphincter muscle at the top isn’t strong enough to close tightly. But what makes it ‘silent’ is that instead of spitting it up, they swallow it. It burns coming up and going back down. A lot. A baby should be content after they eat, but with silent reflux, it brings pain. They arch their back, throw their heads back and clench their fists – without relief. Some babies refuse to eat while others want to nurse slowly all day long.

Let’s get something straight before describing how you can identify reflux that is painful: All babies have reflux to some degree. Your child may have gurgly burps or spit up a lot but this doesn’t mean you need to be concerned. What matters is whether it hurts them.

Although most literature says a baby can’t have acid reflux right away because they don’t have stomach acid yet, our son’s symptoms were the same on day 1 as at 7 weeks, only at 7 weeks they were worse. Much worse.

Our sons’ symptoms of painful silent reflux included:

  • excessive crying that was worse at night. A whole body cry – red in the face, voice rattling, gasping for air
  • basically never slept or slept for only 40 minutes of fitful sleep at a time (there will be a separate post dedicated to our experience with reflux baby sleep)
  • would cry out in pain during sleep, especially after eating
  • repeated hiccups – not just a nuisance, they were obviously painful and would last forever. My daughter had hiccups too, but not like these. They were vicious
  • audible gurgling in his throat, followed often by red-faced coughing fits or sound of clearing his throat
  • body always tense, fists clenched
  • not content after eating, often with back arched and screaming in pain
  • during the day, wanted to nurse constantly (self-soothing) but never seemed satisfied
  • at night, frantic to nurse, only to pull back in pain and scream, then be frantic to nurse again (frantic to eat to eat, starting to eat, refusing to eat, repeat). This is the ONE repeated symptom that I’ve heard the most from other parents
  • diapers were not normal – runny, greenish, acidic (we did not know this at the time – we had no idea what a normal newborn diaper looked like until my daughter was born)

That mom’s story gave me the motivation to keep hunting for an answer. Her words gave us confidence to demand a response from the doctor and to describe, in detail, EVERYTHING that was happening. It took countless phone calls to nurses and lactation specialists, doctor visits, and finally nursing him in the clinic with a lactation specialist to diagnose him. It took the lactation specialist less than 5 minutes to figure out what was going on after our son finished eating and began writhing in pain (if you think your child has reflux and have trouble getting someone to agree, I’d reach out to the lactation specialist at your pediatrician’s office).

They diagnosed him with silent reflux at 7 weeks.

The pain had a name that made no sense – Infant Silent Reflux is NOT silent.

 

Read more about our experience navigating reflux treatment and look for future posts that will describe our experiences with toddler reflux, reflux sleep (or lack-of), and nursing a reflux baby. If you found this story to be like yours – don’t hesitate to get your child help. If you need more information sooner than the next post, email me (thisgratefulmama[at]gmail.com). I’m happy to share anything I know and help in any way I can.

Fun with Chalk Paint – Inexpensive Goodwill Picture Frame Makeovers

goodwill frame makeovers

We’ve lived in this house for over a year, but our walls are still mostly bare – due to a mixture of laziness, budget and not finding the ‘perfect’ frames. To get exactly what I wanted, for less, I decided to chalk paint two old picture frames.

A few months back I bought two old frames at Goodwill. The shape and details were great but they were beat up and not my choice of colors. I scored them for a whopping $4.

Here are the original frames:

Frame2

Frame1

The plan was to give these frames a makeover and use them to display photographs of our kids. A little chalk paint, sanding and waxing and they cleaned up nicely in a couple of hours.

I like how even though both frames are painted with the same color and style, the original frame color showing through in the distressed areas makes each frame unique.

Frame1 painted

Frame2 painted

I roughly estimated the blue frame as a standard 11×14″ size in the store. However, once I tried to put a new 11×14″ mat into it, I discovered the opening was actually 11×15″. Whoops.

Not wanting to make or buy a custom mat, I used some decorative tape I had on hand ($1 section at Target) to make a border all the way around.

tape border

With chalk paint and wax, a little goes a long way. I had plenty of black chalk paint leftover from the DIY Outdoor Vertical Stencil-Painted ‘Believe’ and ‘Grateful’ Sign, and wax and brushes leftover from the Updated Framed Mirror. I spent $4 on the two frames, $1 on tape, and $2 on the pre-cut 11×14 mat. That makes two framed photos for $7. Worth it!

Frame 1 finished Frame 2 finished