FOXG1 Parents Connect Support Group | Monthly Topic: Sleep (or lack thereof)

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Apr 15

Thank you to all the incredible parents who joined us for our recent monthly FOXG1 Parent Connect Support Group Zoom sessions focused on sleep challenges. These conversations were filled with honesty, empathy, and shared wisdom.

We've compiled a summary of the most helpful takeaways for those who couldn’t make it.

Common Sleep Issues in Children with FOXG1 Syndrome

FOXG1 parents shared similar patterns of disrupted sleep, including:

Gagging or choking episodes during the night
Involuntary movements or muscle spasms
Difficulty falling asleep or staying asleep
Irregular sleep schedules and frequent night wakings

These sleep disturbances can significantly impact both the child’s well-being and the caregiver’s health.

Medications That Help Some Children with FOXG1 Syndrome Sleep

Several parents spoke about their experiences with sleep-related medications. Here are some that were mentioned:

Clonidine: Often helpful for children with seizure activity or severe sleep disruptions
Trazodone and melatonin: Used by some families with varying results
Clonazepam: Sometimes used in combination with clonidine to improve sleep quality
Keppra: Adjusting the dosage of seizure medications like Keppra had a positive impact on sleep for some children
Baclofen: Shared as effective in reducing spastic movements that interfere with sleep
Ferritin: Iron supplements for brain iron levels
Doxcipin: Some parents found success with this and melatonin
Melatonin: Commonly used supplement for sleep

Parents emphasized the importance of tracking side-effects and working closely with their child’s medical team when managing or adjusting medications.

Sleep Routines and Tools That Make a Difference

One of the most echoed tips in the FOXG1 Parents Connect Support Zoom was to establish a consistent bedtime routine. In addition, parents shared tools and tactics that help their children feel more comfortable and safe while sleeping:

Swaddling or positioning the child at a 30-degree angle
Using silk sheets or blankets to reduce friction and discomfort
Night monitoring using baby monitors, infrared thermometers, and pulse oximeters to track breathing, temperature, and oxygen levels

These strategies can help ease anxiety around nighttime care and promote more restful sleep.

The Role of Sleep Studies for FOXG1 Children

Some families have pursued sleep studies to better understand what might be disrupting their child’s rest. In one case, tonsil and adenoid removal led to noticeable improvement in sleep quality. Sleep studies can help diagnose conditions such as sleep apnea and guide treatment options.

Digestive Support and Sleep for FOXG1 Children

An important insight came from a FOXG1 parent who addressed sleep disruptions caused by constipation. Glycerin suppositories and a consistent bowel care routine were highlighted as effective in improving sleep hygiene.

Specialized Seating and Equipment for Sleep in FOXG1 Children

Parents also discussed seating solutions for children who need extra support when sleeping in public or semi-reclined positions. The Special Tomato Out and About Seat was recommended as a versatile, supportive option for travel or dining out.

We are deeply thankful to all the FOXG1 parents who opened up and shared their experiences. These conversations are helping families across the world better understand sleep issues related to FOXG1 syndrome and how we can support each other in managing them. We hope these tips provide guidance and comfort as you explore what works best for your child.

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