A parent's perspective with undiagnosed CMS

This post is for parents and medical professionals that need immediate information on how to take preventative measures to keep your child stable. It is a must read!

For 18mths our child went undiagnosed. Luke was globally hypotonic with minimal muscle tone and we just didn't know what we were up against.

As an advocating parent and a mother that prayed heavily for discernment I have narrowed down what I believe every medical professional should tell a potential CMS parent.

1) Manage the secretions. GET A SUCTION PUMP!! Maintaining the airway was so key with our child. CMS kids cannot manage their secretions when tired. Even if a child is 100% tube fed and not managing liquids and food...doesn't matter! CMS kids will choke on their own secretions. If you opt to do a secretion medication....don't mess with compound robinul! Compounding meds differ...try to use injectables and pull the med out with a syringe. You'll get more consistency and can manage their secretions better.

2) DO NOT ALLOW YOUR CHILD TO GET SICK IF YOU CAN HELP IT! CMS kids go into respiratory distress if at 100 temps (in our experience).
And, because some days they are stronger than others it can be quite deceiving until there is a viral sickness or any other sickness. I had to resuscitate my child at a temperature of 100 because he started chocking on his own secretions. Maintaining an airway is so key. Always have suction pump and oxygen on hand if sickness starts occurring. If we had not had a suction pump from day one, we would have lost him 3x.

3) Quarantine your child if you can. We never take Luke to public places and we never expose him to children. We just can't risk it. This has really worked for us in keeping him healthy.

These 3 things have kept our son stable and we believe that quarantining our child has been key to our success in keeping Luke out of the hospital.

I cannot stress enough how the secretions and maintaining a good airway has been so key for us.

I hope this information helps any parent and/or medical professional that might be facing this diagnosis.

I truly believe that by God's grace we as parents have been given an amazing intuition about our children. With an undiagnosed child, it's all you have. I trust and hope this will help any parent in the future. Stay with your gut! God gave you this intuition for a reason.

Warm regards,
The Hughes family