Update | It’s a Crappy Situation

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Before I get into Jaxson’s poop and sleep journey, I was finally able to catch little man signing for more! I’m very happy to share Jaxson’s first official sign with our readers! Yay for baby signing! Can’t wait to share more!

He USE to be a GREAT sleeper:

Jaxson slept pretty well in his little rock n play sleeper up until he was eight months old. We swaddled him, he took a binky, and he was golden. It wasn’t until about December after his tubes and lip and tongue clip surgery that he started to sleep poorly. He also stopped taking his binky so we thought maybe there was a correlation with the surgery and sleep problems. We were wrong.

One of the features of DYRK1A Syndrome is sleep disorders. I was researching within the Support Group and found endless posts about our littles not sleeping well. Some tried different medication, a weighted blanket, co-sleeping, anything and everything. I was an exhausted momma and up until a month ago I didn’t want to consider sleeping aids. Not that I have anything against sleeping aids, I am just an overly paranoid mother haha. Jaxson was diagnosed with central and obstructive sleep apnea when he was itty bitty so sleeping aids made me uneasy. Our Pediatrician reassured me that he will be fine as long as I keep it at 1mg.

We started 1mg of Melatonin mixed with his last bottle of milk and within 30 minutes he’s asleep. Which is a miracle because sleep has been nonexistent with Jaxson. Sometimes you can find him up until midnight, fall asleep, and up a couple hours later. He does seem to be sleeping longer but I question his quality of sleep. I am questioning it because even with the Melatonin, going to bed by 9pm and waking up at 6am, he’s STILL tired throughout the day. At this age JJ was taking one long nap at 11pm to 1pm. I know, I shouldn’t compare my kids because every child is different. There are a bunch of children in our support group that don’t sleep very well and I can’t wait to have our third sleep study when we move.

We are PCS’ing to North Carolina next month and will have to look for new specialists for Jaxson. We have already been referred to Duke University since they have a prestigious Sleep Center. I’m anxious to see if his apnea eventually “resolved itself” like his Pulmanologist claimed would happen and to see what his quality of sleep is like.

Being blocked up isn’t fun:

Jaxson didn’t start having constipation issues until he was about five to six months old. We noticed that he would start to strain really hard to poop but really didn’t think much into it. As he got older, it got worse. He started to strain really bad, screaming, spitting up, etc. I’ve changed his diet to prunes, pears, almond milk, you name it. It wasn’t really helping much, but then I started Miralax. I started with 1 tsp a day per some families of the DYRK1A Support page and it worked wonders. He was no longer straining hard and screaming or crying.

Fast forward to the last couple days.. He has been doing great so I stopped giving him Miralax a couple weeks ago because I felt that he was eating better, more foods, and drinking fluids. Evidently I was wrong.. he is starting to strain again, hard stools, and now he’s starting to throw up. Looks like Jaxson will have to continue our Miralax once a day routine and try to give him a bunch of pears, prunes, and peas (yuck!) to help things along with the Miralax. He still likes to eat some stage two baby foods so I’ll stock up on some of that.

Do you have any natural constipation relief tips for this momma?

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September 1, 2018
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  • Reply Stephanie

    Sleep regression is never fun. My boys went through it, but I'm sure not at the same level as Jaxson. I know quite a few people who's children have diagnosed sleep issues that do the melatonin for their children and it works wonders. And I'm glad the Miralax is working, because that's no fun for anyone!

    September 2, 2018 at 4:12 pm
  • Reply Patricia Chamberlain

    Thank you for continuing to share your family's story! I can sympathize with the lack of sleep. My daughter was a late term preemie who spent a month in the NICU and has been a historically terrible sleeper.

    September 2, 2018 at 4:12 pm
  • Reply Ria Parikh

    Thank you for sharing your personal experience and family stories. It must be really tough but I am very happy to hear that Jaxson is doing better.

    September 3, 2018 at 3:51 am
  • Reply Helene.Vlacho

    I can only imagine how difficult it would be for Jaxson not to be able to sleep. It's so good that melatonin helps him a lot. I suffer from insomnia every now and then and it's really hard.

    September 3, 2018 at 11:09 pm
  • Reply Maysz Adrias

    Thanks for sharing about Jasxon condition I hope he will be okay 🙂

    September 4, 2018 at 3:28 am
  • Reply Maysz Adrias

    Thanks to share about Jaxson conditon. I hope he will be okay 🙂

    September 4, 2018 at 3:28 am
  • Reply JaxsonsMomJennie

    Thank you Patricia! Is she still a terrible sleeper today?

    September 4, 2018 at 11:13 pm
  • Reply JaxsonsMomJennie

    Thank you! <3

    September 4, 2018 at 11:13 pm
  • Reply JaxsonsMomJennie

    Thank you Helene. He does end up sleeping much more quickly but the last couple nights he has been up at 3am ugh!

    September 4, 2018 at 11:14 pm
  • Reply JaxsonsMomJennie

    Thank you Ria!

    September 4, 2018 at 11:14 pm
  • Reply JaxsonsMomJennie

    Thank you Stephanie! It's definitely working again LOL. He's been going three times a day the last couple days — poor thing!

    September 4, 2018 at 11:16 pm
  • Reply Kye Chavez

    I'm sorry about what happened to your Jaxson. I really don't know any tips for constipation. I've read about prunes but even that didn't work out right. I hope he'll gets better.

    September 5, 2018 at 5:11 pm
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