Birth to 3 Years Old
Things to be aware of for your Prader-Willi Syndrome child from birth to three years:
1.) Call ECI for services - Early Childhood Intervention (ECI) is a Texas statewide program for families with children, birth to three, with disabilities and developmental delays. ECI supports families to help their children reach their potential through developmental services. Services are provided by a variety of local agencies and organizations across Texas. Call 1-800-628-5115 to request for your child to be assessed. Most PWS babies will benefit from occupational, physical & speech therapies. One may also want to ask for a dietitian to visit monthly to help monitor weight and nutritional needs. It helps to have printed material of what Prader-Willi Syndrome is ready to give ECI workers during the assessment, since most have not heard of the syndrome. Also be aware of cost share offered for ECI - this is normally MUCH CHEAPER than doing a co-pay via private insurance. For example, if your cost share is $20 for the month & you are receiving therapies four times a month, that equates to $5 per therapy session!! Remember - you have to give permission for ECI to bill your private insurance. For more information on ECI click here.
2.) Get your child on interest lists:
These are various government services to help you help your child. They offer different medical & respite benefits which could get your child Medicaid & other help. Lists can take up to 10 years of waiting before the child clears to receive services so get on the lists asap. You should receive a phone call from the state on a yearly basis to ensure your continued interest. Call 877-438-5658 & ask to be enrolled in all three.Click here for more general information.
**Do be aware, the intaker of the call may not know what Prader-Willi Syndrome is. There are so many rare syndromes, they do not have a check box for them all. Instead, know the medical difficulties that come with PWS.
3.) Texas Children's Hospital of Houston holds a Prader-Willi Clinic every other month. Dr. Ann O. Scheimann, a pediatric GI specialist, flies in from Maryland for the Prader-Willi Clinic every other month. Call 832-822-3131 for an appointment.
4.) Get doctors you can trust - Build a strong relationship with your doctor(s). Often, it will be up to you, the caregiver, to make sure your doctor has the latest information on PWS. Go to our Medical Resources page for a list of Texas doctors & specialists used by our PWS families. Try to keep yourself educated through national Prader-Willi Association (USA). You are your child's best advocate!!
5.) Search for other PWS families -
- Texas Prader-Willi Association on Facebook
- Prader-Willi Syndrome Open Forum on Facebook
- Our national association, Prader-Willi Association (USA)
- Foundation for Prader-Willi Research (FPWR) - www.fpwr.org.
6.) Helpful books - Also suggested for parents of infants is the below books meant for the Down Syndrome community. Since both our children & Downs children experience similar low muscle tone & speech delays these can be very helpful in tracking where your child is & what you can do to help them acheive that next mile stone. Consider looking to your local library prior to purchasing so that you get a good feel if they are right for you.
- Communication Skills in Children with Down Syndrome A Guide for Parents, by LIbby Kumin, PH. D., CCC-SLP
- Gross Motor Skills in Children with Down Syndrome, A Guide for Parents and Professionals, by Patricia C. Winders, P.T
- Fine Motor Skills for Children with Down Syndrome, A Guide for Parents and Professionals, by Maryanne Bruni, BScOT (Reg)
7.) For children is closer to 2 & 3....learn about your options via PPCD (Preschool Programs for Children with Disablitilies). These services are offered through your zoned school system. IT WILL BE PRUDENT, to educate yourself a year in advance (if you can start when they turn 2) regarding the procedures & options they provide to get the best care for your child. Sometimes it takes some digging to find the right options for your child. Other parents who are walking through the process ahead of you will be most helpful. PPCD goes from age 3 to Kindergarten. http://www.texasprojectfirst.org/Age3to5.html gives more info regarding PPCD. Below is a listing of other resource groups that can help advocate and assist in understand the ARD process (within PPCD) when your child is close to 3 years old, etc...
8.) Other helpful special needs groups-