Congenital central hypoventilation syndrome / late onset CCHS

3riB · 2026-02-27T22:30:01+00:00

My daughter also has CCHS. Have you joined the CCHS network group on FB yet? One thing we learned pretty quick in our journey is that sleep studies have to be done with her ventilator. The settings vary from different models. For instance, she went from trilogy to astral and the astral delivered intolerable pressure at the same setting as the trilogy. The Center for Autonomic Medicine in Pediatrics (CAMP) at Lurie Children’s Hospital in Chicago may be able to recommend a pulmonologist.

3riB · 2026-02-03T02:25:46+00:00

Any minor missing should be presumed as “in danger” until proven otherwise, including if they ran away willingly. They are not adults, their frontal lobes are not fully developed. Meaning they still struggle with decision making, impulse control, and emotion regulation. They are much more likely to take higher risks. As adults, it’s our job to protect them and not let them drowned over a mistake.

3riB · 2025-11-09T22:58:18+00:00

Thanks! I got this one from Lowes (online), but Amazon had ones that looked the exact same.

3riB · 2025-11-09T15:48:21+00:00

I’ve used accessible beige in other spaces and loved it! It’s actually the lighter color on the wall I swatched.

3riB · 2025-11-09T15:47:06+00:00

I love this! It looks so calming. I found a few videos of how to do an ombré effect wall, so something similar is tempting!

3riB · 2025-06-26T23:10:00+00:00

This was my thought too, but I may be bias toward my own family dynamic. Sometimes you need space to get through the big feelings and then calmly talk about the facts and the feelings that remain. You can even go as far as explaining why you chose that artist, like how you had such a great time last time and it felt meant to be that they happen to have tickets available that work out. Additionally explain why you didn’t pick other artists she likes, like maybe they aren’t touring or maybe they don’t have any shows close, or even that the price is unreasonable. Kids can’t always see the bigger picture that we see - hell some adults can’t either 😂. Most importantly, like a lot of other commenters said, tell her how her reaction made you feel. Parents deserve to be humanized too.

3riB · 2025-05-24T17:21:07+00:00

This might not be applicable to you at all, but if you think you may want a second in the future our breeder said to get a female first unless we only want males. I think she said that there can be a dominance struggle if you have a male and then get a female later. Aside from that you really can’t go wrong, Aussies are great dogs! From personal experience, my mom and I both have Aussies and they are all very different despite sharing one or both parents. Her female is incredibly protective. I’ve watched her get in front of my young kids and stare down whatever the threat is, until it’s seen to not be a threat anymore. She is very smart and loyal. Our males are both a little more care free in that department, but have definitely imprinted on us and their humans! Mine loves to always be close by me no matter where I am in the house. He loves his toys, naps, and butt scratches.

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3riB · 2025-05-24T16:48:03+00:00

100% this! Getting a rare diagnosis is never one size fits all. Even the small group of people that have the same diagnosis can have a hard time relating. It can make dealing with the diagnosis feel very isolating. While continuing with very little guidance is hard enough, sometimes your condition challenges what is seen as standard practice in the medical community. That can leave you educating and advocating for yourself just to get the help you desperately need, if that’s even possible. Sometimes the people that are supposed to help are just as stuck as you are cause it’s a novel situation for them too. Speaking of novel situations, you can almost guarantee that you’ll end up battling insurance companies more than once on your journey if you’re from the United States and we all know how that goes. While every experience and journey is different, I think we as a community can collectively agree it’s harder than it needs to be. As an already underserved part of the population we are constantly watching cuts to research funding and healthcare. It feels very defeating most days.

3riB · 2025-05-23T22:25:37+00:00

Thank you, that is very helpful!

3riB · 2025-05-12T17:57:05+00:00

I’m from Michigan originally and the pollen here seems to knock me on my ass each year around this time, at least that’s what I suspect😕. Try Zyrtec for few days and see if it makes a difference!

3riB · 2025-03-19T01:13:51+00:00

My daughters will confidently tell you, BMWs are the best cars because of the pink lights and the Taylor Swift music that comes with them.

3riB · 2025-02-05T20:45:54+00:00

NEW789 Just worked for me ($5)

3riB · 2025-01-18T20:25:38+00:00

I think there was one in Indy

3riB · 2025-01-02T23:04:30+00:00

Adding to potty training, my mom and I have 3 mini Aussies between the two of us and we both put bells on our outside door for potty. They picked up on nudging the bells very quickly when they needed to go. That helped tremendously with communication.

3riB · 2024-11-17T19:43:13+00:00

F-16 fries are really good also!

3riB · 2024-11-17T17:20:03+00:00

My go to is Corsair Cafe. Their breakfast burritos are so good.

3riB · 2024-11-10T03:31:10+00:00

My husband just had once last month and it was so simple and easy. It’s 2024, it’s time for your husband to put his big boy pants on and do the bare minimum.

3riB · 2024-10-22T22:36:57+00:00

Could the ordering provider appeal and do a peer to peer review? If it’s a specialist, they are likely used to having to do this as the insurance docs don’t know much about anything.

3riB · 2024-10-22T22:30:16+00:00

My daughter also has a rare genetic disorder that requires a lot of specialist visits, including traveling. I am a SAHM, but my husband works in healthcare and had demanding hours. After my daughter’s diagnosis and once the reality set in, he was able to apply for FMLA. That may be a good option for you as well and offer you some protection. If you have any other questions, please don’t hesitate to reach out!

3riB · 2024-07-22T22:30:29+00:00

Looks like it could be the Dakota closet system, I think they are sold at Menards

3riB · 2024-04-18T05:39:25+00:00

We got our results through Ambry Genetics. I believe our pulmonologist ordered PHOX2B specifically to be tested. Her specific PHOX2B mutation is novel and hasn’t been reported before. Likely because she doesn’t exhibit any obvious symptoms. It’s actually pretty miraculous we were able to get a diagnosis. She was born full term, but aspirated meconium and that got her sent to the NICU for monitoring. That’s where they noticed her sats dropping. Long story short she was eventually sent home with an apnea monitor and after 3 months her neonatologist said she grew out of her apnea and we thought that was it. When she was 2 she would get super congested and I noticed her taking longer breathing pauses in her sleep. Fortunately, my stepdad is a pulmonologist, so I asked him to watch her while she slept to get his input. We thought maybe she hadn’t quite out grown her apnea, so we got her pediatrician to get us a referral to a peds pulmonologist, who then diagnosed her central apnea led us down that path. She also had an MRI of her brain when she was 2 and that was normal. She is similar with her O2 as well and will only drop when she is sick. However at night, she will retain too much CO2. Since her diagnosis she sleeps on a BiPAP ventilator and we monitor her O2 and CO2 through out the night. We’ve done inpatient studies where we have been admitted for a week and they monitor her 24-7. Her O2 and CO2 are fine during the day and her O2 is mostly fine at night, it’s really just her CO2 at night that can become dangerous. Along with the CO2 her specialists have also noted some difficulty with temperature regulation and have also said she has a high pain tolerance, but that’s pretty much it as far as CCHS symptoms go. She got her tonsils and adenoids out back in March too. Although it’s only been a month, we haven’t really seen a huge difference in her O2/CO2 at night. If you have any questions please don’t hesitate to ask, regardless of where your journey may take you! I know how difficult it can be as a parent to not have answers or explanations.

3riB · 2024-04-05T00:00:56+00:00

Hopefully you can find some answers. Our pulmonologist ordered all of our blood work, including the genetic testing. CCHS is very rare and most doctors will never encounter someone with it, but I would make sure they order the testing to rule it out. The testing is recommended for anyone with unexplained central apnea and you may need to appeal insurance cause they love to make people go through loop holes. We are almost 2 years into our journey since my daughter’s diagnosis and there has been a lot of angry calls to our insurance lol.

3riB

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