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Apnea, dandy walker, premature birthMy beautiful twin daughters were born 8 days ago by emergency section at 28 weeks gestation. The girls were also troubled by twin to twin transfusion syndrome. The smaller, donor twin (Abigail), had dandy walker syndrome diagnosed at 17 weeks gestation. Both girls are having episodes of apnoea and bradycardia, although Abigail is experiencing more frequent and prolonged episodes than her sister. My wife and I have been reassured that such episodes are associated with prematurity but that Abigail’s more frequent episodes and the fact that they are not improving merits some attention. The doctor/nurses seem quite focused on “infection” as the most likely cause, which seems fair enough, but I wonder if dandy walker syndrome is associated with apnoea due to the malformation being so close in proximity to the medulla? 4 comments to Apnea, dandy walker, premature birthYou must be logged in to post a comment. |
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My granddaughter, who is 2 1/2 now, was born almost full term just under 37 weeks. In the hospital she problems regulating her body tempature, blood sugar and blood pressure for the first few days. It wasn’t till she was home and about 3 weeks old she started having apnea episodes, very scary to watch a baby quit breathing!! These continued for the 4 months, by that time she had started getting Early Intervention services, PT & OT to help with her strength and muscle control. One day her OT was talking to us about it and asked if we ever switched her position during an episode and suggested rolling her in our arms on her side, his theory was that it was muscular, that her respitory muscles would lock up and she would stop breathing. He wasn’t gone an hour and it happened, we did what he suggested and she immediatly started breathing on her own again to our delight! In our case, her muscles weren’t always getting a good signal but moving her stimulated them enough to kick back in and do what they were supposed to. DW does affect the area of the brain that affects motor skills and muscle control we had just never looked at her breathing problems from that perspective. We also didn’t have the issues that go with prematurity that your little ones are having to deal with but I just wanted to share our experience. Good luck to your family,we’ll say a little prayer for all of you. If you have any other questions please don’t hesitate to post them here or email us directly.
Terri
Our son Ryan who has DW was born at 28 weeks 5 days gestation weighing 892 grams (1 pound 15 ounces) and had apneic episodes and bradycardia events. We were told that the apnea/bradycardia were related only to his extreme prematurity and NOT the Dandy-Walker.
Ryan will be 5-years-old this May. He outgrew the apnea and bradycardia episodes after a few months but we had to continue with the monitor until we had a good sleep study.
I’m happy to share any details about being prescribed caffeine to help him breath, coming home on oxygen and a apnea/bradycardia monitor (which ended up being a literal lifesaver) or anything else if you’d like to hear them. Feeding and reflux were real challenges for Ryan but he eventually outgrew that to.
Call if you’d like to chat. In the meantime we’ll be potty training.
Thanks,
Eric
301-919-2653
I knew Jayme had sleeping problems from the day we brought her home from the hospital. It took me a while to put my figure out what was going on. For a long time I just thought she was a light sleeper. I slept in her room with her because she woke up many, many times in the middle of the night. She often twitched her legs, sounded like she was holding her breath, gasped for air, made choking sounds. Finally, when she was one year old, I spoke with her pediatrician and insisted her sleeping was not normal. She referred me to the sleep clinic at our children’s hospital, which then took another 3 months to get into. The physician was a wealth of information and pointed out many things that my pediatrician hadn’t. Like her short chest wall, high palate, small nasal airway, all of which were attributed to her DW. The actual sleep study was one of the most traumatic events in her life (beating out 2 shunt surgeries, non-rsv bronchiolitis, 6 weeks in a pavlik harness and 6 more in a brace for dual hip dysplasia). She has lots of sensory issues anyway so what normally would take about 30 minutes to attach all the wires, etc for the sleep study, with her took 2.5 hours of her screaming hysterically. It was almost too much to bear and I was very close to just leaving and saying forget it. I’m glad I didn’t because the results of the study were horrifying. She was diagnosed with severe obstructive sleep apnea. During the 6 hours that she was monitored during the study, she had over 500 episodes of apnea. She was immediately put on oxygen at home while she slept (a nasal canula, which was another challenge because of the sensory issues). Everything finally made sense to me. She (nor I) hadn’t had any sleep for over 15 months, which even explained problems advancing in her therapies (PT &OT). When she was 17 months old she had her tonsils and adenoids removed. I’ve refused to put her through a follow up sleep study, but I’m convinced it has cleared up at least 80% of her apnea episodes. I’m hoping as she gets older, she’ll outgrow it completely. She can now withstand a whole hour of therapy and is much more pleasant, in general. She is now almost 28 months. She goes to bed at 8pm and sleeps almost 12 full hours!
Hi Eric,
My wife & I had our first child 5 weeks ago and she was diagnosed with dandy walker @22 weeks. She is currently in hospital and has difficulties with feeding/reflux/apnae & dropping oxygen levels. She hyperventilates a lot and the Docors cannot figure out what is causing this.
She does it while sleeping and feeding! Have you come accross this?
Your story sounds VERY similar to ours. Any help or further info you could provide would be greatly appreciated.
Regards,
Richard in Ireland.