When you're new to this diagnosis, you're hoping that some of what's on the symptom list won't apply to you. And maybe you get lucky, but I would say that GI is probably not one of the ones where you get lucky.
If your child has a diagnosis of CDKL5 Deficiency Disorder, chances are they will struggle with constipation at some point. Why? Well, there are a variety of reasons for it.
Factors that Can Contribute to Constipation
- Low Muscle Tone (Hypotonia) - Low tone can affect many areas of the body including the muscles involved in bowel movements.
- Feeding and Swallowing Difficulties - Difficulties in this area can impact overall digestion and bowel regularity.
- Gastrointestinal Issues - Reflux and vomiting can accompany constipation and further complicate things.
- Medications - Some medications our children take can cause constipation.
- Developmental Delays - These can impact one's ability to develop regular bowel habits and recognize the need to go to the bathroom.
And perhaps there are other reasons that are not as well understood. There is a lot still unknown about CDKL5!
Needless to say, constipation is uncomfortable and when our children are uncomfortable they are at risk for possible seizure increases and behaviors that stem from that discomfort.
From ensuring adequate hydration, to dietary changes, to medications - it is important to address constipation in conjunction with your medical team. So make sure it is on your list to discuss and be a good reporter of what's going on at home.
As Amanda says, "Get in the habit of monitoring your child's GI like you do their seizures."
Proper management of constipation can significantly improve your child's quality of life and overall well-being. Have a listen to episode 6 of the CDKL5 in Color podcast to hear our full discussion on this topic.
Happy poo to you! 😄
Until next time 💚
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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.
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