Emergency Treatment Plan for Kids with Special Needs

Here is a great article for preparing for emergency situations for kids with special needs:

http://knol.google.com/k/emergency-treatment-plans-for-kids-with-special-or-chronic-health-issues#

Sleep Apnea Support Group

There is a Wasatch group, and you can find their information here:


http://www.sleepapnea.org/cgi-bin/databasenew.pl?UT&&State

You can also link from that page to find groups in other states.

Sleep Apnea

As parents of children with clefts, you may want to be on the lookout for signs of sleep apnea if your child has not already been diagnosed with the condition.

"Preschool children with cleft lip and/or palate have a risk of obstructive sleep apnea that is as much as five times that of children without cleft. Obstructive sleep apnea appears to be underrecognized in this group of children."

J.E. Maclean, K. Waters, D. Fitzsimons, P. Hayward, D. A. Fitzgerald (2009). Screening for Obstructive Sleep Apnea in Preschool Children with Cleft Palate. The Cleft Palate-Craniofacial Journal: March 2009, Vol. 46, No. 2, pp. 117-123.

Here are some of the night-time symptoms of children with sleep apnea:
Difficulty breathing while asleep

• Pauses in breathing
• Snoring
• Restless sleep
• Heavy sweating while asleep
• Nightmares/night terrors
• Bed wetting

Daytime behaviors may include:

• Sleepiness during the day
• Aggressive or hyperactive behavior
• Learning disabilities
• Morning headaches
• Discipline problems
• Failure to thrive

http://newtechpub.com/phantom/snore/osakids.htm

For kids with clefts, apnea may be resolved through surgery (such as a mandibular distraction for a child with Pierre Robin Sequence), or by using a CPAP (Continuous Positive Airway Pressure) machine for sleep.

Here are a couple more articles on childhood sleep apnea:

www.stanford.edu/~dement/childapnea.html
www.sleepapnea.org/info/children.html
www.entnet.org/HealthInformation/Could-Child-Have-Sleep-Apnea.cfm

There are myriad articles if you are interested in finding more information online!

Would any of you like to share your experiences with sleep apnea in your children? If so, please email Kidswithcleftsblog@gmail.com.

Surgeon Profile: Dr. Kjar

Contact Information:

Premier Plastic Surgery of Utah

1551 Renaissance Towne Dr #360

Bountiful, UT 84010

Get Directions

(801) 295-9105

drkjar.com‎

Parent Comments:

"Doctor Kjar does things differently that anyone in the state but does it the same as everyone in the country. This is our treatment plan:

"He had his lip repair on October 12th. It was a great success and he looks great! I saw someone in Walmart today that I haven't seen in years and when I told he had just had his lip repair surgery she told me she would have never guessed anything had even been wrong.

"He will have his palate repair three to six months from now. Dr. Kjar likes to repair earlier for a few reasons. The main being the palate muscles are repaired correctly if the whole palate is repaired in one surgery instead of two. This helps with speech among many other things. He will have to have a NAM (retainer from Dr. Yamashiro) until that point. But we are confident with his plan.

"Then follow basically the same timeline as everyone else. Bone graft around 7 years old, possbile mid-face surgery, etc. The mid-face surgery can be necessary no matter when the palate is repaired according to the research I have done. By mid-face I mean, the upper jaw doesn't grow forward like it should and has to be repaired.

"On top of the treatment plan working for our needs, our doctor is wonderful. We never have a problem getting in to see him, he is completely available any time of the day. He have his office number, cell number, and pager number. His staff is knowledgeable and very helpful."
 

My milk supply is dropping. What can I do?

Here are some recent tips from group members:

• Pumping is supply and demand. Try increasing the time you pump, even if you don't seem to be producing more milk immediately; you should see results in a couple of days. 
• Also try increasing how many times you pump per day. You may be able to cut down again once your supply is established.
• Make sure you have the right size horns for your pump. A lactation consultant can help you determine if yours are the right size.
• You may also try fenugreek supplements or lactation tea to help boost your supply.
• Drink lots of water!
• Try to relax as you pump.

Utah Kids Group

There is another Yahoo group called Utah Kids that is similar to the Kids with Clefts group, but the kids all have special health care needs, not just clefts. If you have questions or are looking for support for other health issues, this may be a great resource for you!

Here is the link! http://groups.yahoo.com/group/utahkids/ 

Thanks, Jenny, for sharing this with the group.

Study Provides New Leads into Genetics of Cleft Lip and/or Palate

Here is a link to this article; it may be of interest to you.

http://www.nih.gov/news/health/may2010/nidcr-03.htm