Friday, January 4, 2013

Diagnosis #2: Sleep Apnea - Why my toddler was such a terrible sleeper

I know many of you who I know personally will have already learned about this from conversations in person or online, but I want to share for the rest of the blog readers (or google searchers) who may have terrible sleepers. The other day someone emailed me who has a terrible sleeper and had come across my blog; I like to hope that all of this insanity we've gone through can help other parents find answers faster.

Back in April we started seeing the sleep specialist and she initially thought it was Restless Leg Syndrome (see post here). Iron supplementation (after seeing her low iron blood test results) really seemed to help a bit. But everything we tried after that was only marginally effective.

We were all frustrated (and still sleepless with Evie having multiple wake-ups per night, often wanting to stay up the whole night once she awoke, she did NOT return quickly to sleep). We were taking her on drives to get her sleepy again (and by we I mean mostly Joe), giving up on consistency and just letting her get up, and overall being very cranky and frustrated and at our wits end.

Finally our sleep doctor insisted on a sleep study. I'd resisted because they are very expensive ($1700-ish) and I feared that my toddler who won't even let me put bows in her hair would never let us put a couple dozen nodes all over her body. As I posted here, she didn't sleep the whole night, but the sleep study did reveal she had sleep apnea.

When we took her in for her the scope they found that while her tonsils & adenoids looked fine when she's awake (and scoped in the office), when she's asleep they relax and block her airway. Thus the apnea. So they removed them right then and there.

I'll never forget how traumatizing it was when she came off the anesthesia. Of COURSE she didn't sleep it off like some kids do, she fought through it and woke up quickly after the surgery and was a wreck. Mouth all swollen from surgery, scared, furious, and screaming. Completely inconsolable. I'll never forget it, it was so upsetting.
Eventually she slept (note how swollen those cheeks are...sad!). It was only when she had her Elmo in her arms, the fishy movie on TV (Finding Nemo) and was being held by her parents that she could rest. We watched so much Finding Nemo.
Evie was so upset by the whole experience and I felt like the meanest mom for subjecting her to it. At felt at times like I was selfish because I wanted to sleep so we put her through this invasive surgery. But that's not it. Sleep is crucial for all sorts of development. And we got through it. And it was worth it!

Tonsillectomies & adenoidectomies are painful surgeries. The recovery is long and hard - 2 weeks for children, a full month for adults. For older children it is an outpatient procedure, but with kids 2 and under they require you stay overnight. They also require your child be drinking enough so they don't get dehydrated and end up back in the ER.

Our kid would not eat or drink anything. The nurses tried playing games, we tried bribes, we tried every drink under the sun (juice, chocolate milk, milkshakes, slushies, soda, water...) and she was just in so much pain she would NOT do it. So we stayed in that hospital 3 extra days until she finally started drinking. It was another week/week-and-a-half more until she was back to normal on eating/drinking/life.

We had to retrain her to sleep in her bed (because she was used to falling asleep in a hospital bed with her parents there and a TV running), but she did get back to sleeping.

And it has been dramatically better. We've had to be really consistent in the sleep training, but she now sleeps MUCH better. We still have some issues with wake-ups, but when she sleeps it is deeper. She wakes more rested. And her speech has exploded.

It was a long and painful process diagnosing (and then treating) Evie's sleep issues, but so worth it. We'll be paying off that surgery for a while (we have insurance, but there are still bills, it isn't cheap to hire an ENT surgeon and then stay in the children's hospital for 4 full days...).

Bottom line: if you have a kid who struggles to sleep here is my advice:

  1. I cannot recommend enough reading this book
  2. Also talking with your pediatrician at checkups can be helpful. They can help trouble shoot. Consider even making a special appointment just to discuss sleep (I did this, if you make a separate appointment it will get more attention than the rushed well-baby checkups where you have so much to discuss)
  3. If after a couple months of consistency (and your kid is at least 12 months old) the training hasn't helped enough (combined with just growth, some kids won't sleep well til a bit later, that's just differences in temperament), seek out help from a board certified pediatric sleep specialist. You can find one by googling "sleep clinic ____ (your state, in our case Utah)". Call whatever clinic you find and if they don't have a personal specializing in pediatrics, they'll have a referral.
Sleep is so so important for children. And parents. If you have a normal kid I think that most sleep training methods will work if you are consistent (I know mamas who do it all kinds of ways from rocking/nursing to sleep, sharing a family bed, all the way to crying it out. And they've had success with it all). But if you have a child who really struggles and is difficult, try the suggestions above.

Happy sleeping everyone! I hope this was helpful/interesting. :)

6 little remarks:

Tannie Datwyler said...

This is awesome Anna. And SO TRUE. Sleep for Everly is not just for you and Joe, it is for her VERY much.

You two are so awesome to work through his and figure it out. It's amazing to share with others too!

Ali said...

Her (yours, too) story is so interesting...never heard anything like it. SO glad things have improved for you all and way to work through it! You are one of the top CHAMPION Mommas I know!!!

Anita said...

Thank you for sharing this! My son has significant speech delays (he is over 2 1/2) and trouble sleeping. He comes into my bed between 4:30 and 6:00 almost every morning, lays there and kicks his legs until I give up and get up with him. I'm so done. He hasn't slept well - ever. It occurred to me this morning (at 5am) that he might have rls or another sleep disorder reventing him from getting the sleep he needs. Thank you for the two great posts about your journey with your daughter. It's so nice to know I am not the only one!

Anita said...

Thank you for sharing this! My son has significant speech delays (he is over 2 1/2) and trouble sleeping. He comes into my bed between 4:30 and 6:00 almost every morning, lays there and kicks his legs until I give up and get up with him. I'm so done. He hasn't slept well - ever. It occurred to me this morning (at 5am) that he might have rls or another sleep disorder reventing him from getting the sleep he needs. Thank you for the two great posts about your journey with your daughter. It's so nice to know I am not the only one!

Cami McAffee said...

Thank you for sharing your story!! I am so glad I came across your blog. Your story sound very close to mine only we still are in the middle of diagnosing it. My daughter is 2 1/2 has speech delays and is a horrible sleeper. We did do a sleep study and are actually meeting with Dr. Pfeffer next week. This gives me hope that there is a light at the end of our very long tunnel. They are thinking it is RLS but she did not have low iron levels. I am glad your daughter finally is getting her much needed rest.

Cami McAffee said...

Thank you for sharing your story!! I am so glad I came across your blog. Your story sound very close to mine only we still are in the middle of diagnosing it. My daughter is 2 1/2 has speech delays and is a horrible sleeper. We did do a sleep study and are actually meeting with Dr. Pfeffer next week. This gives me hope that there is a light at the end of our very long tunnel. They are thinking it is RLS but she did not have low iron levels. I am glad your daughter finally is getting her much needed rest.

Blog Widget by LinkWithin