…and that is exactly what it felt like to me…. making the trip to see Dr. Miller was hands down the best decision we have ever made (and I will speak for Andy on this one!)!! What an experience it was to talk with a doctor that had ACTUAL REAL LIFE experience with Prader-Willi, no textbook talk here folks! The crazy thing that day was that Dr. Miller saw two other new patients that day besides Siena, and BOTH were also from PA… and a bonus we got to meet both of them as well!! (although I had already been email with one of them about her sweet baby Emma 🙂 )
Anywho, our time with Dr. Miller was jam packed with information and changes to Siena’s diet and medications. First off she put Siena on Synthroid because her recent blood tests revealed hypothyroidism (this is common with Growth Hormone). Dr. Miller believes that this could help a little with Siena’s bloated belly. We must run blood tests again soon to make sure the seizure meds aren’t interfering with absorption of the Synthroid.
Growth Hormone dosage has been increased from .4 to .6 – Siena’s growth chart is not where it should be with her being on Growth Hormone. We are hoping with this increase that this will change.
She also increased Siena’s dosage of Carnitine to 4mls in the morning only. This has made a significant difference in her sleepiness, especially at breakfast. Dr. Miller strongly believes that Siena is suffering from narcolepsy and not seizures, and suggested we act on ambulatory EEG as soon as possible. This will be discussed with her neurologist at our next visit.
Siena will continue to have blood tests every 3 months to check her GH levels, but we will not have to do sleep studies anymore unless we feel her breathing has become more labored or she is waking up more throughout the night. This is a huge relief!!! Sleep studies every 3 month seemed daunting~!!
We were told that fats are very important for Siena, and that she should remain on whole milk. Unlike most children, PWS kid’s brains are not fully milenated by age 2 and the fat from whole mile, olive oil and macadamian oils can really help them. We also have begun Coromage fish oil for both Siena and Isla. They love the little squeeze packets 🙂
We will see Dr. Miller every 6 months and couldn’t be more thrilled. We thank all of you who have supported us and Siena and continue to do so… it is with your help that we have been able to give our daughter the best medical care and opportunities possible.
We love you – and also wish all the Moms a Happy Mother’s Day!!
Hey, there…just found your blog today. I have a 3 year old daughter that is a twin that I am suspecting has Prader Willi. I have been working with starting to adjust portions sizes and diet a bit. I would love to be able to talk to you more about this idea of whole milk being important, as I had switched her to skim! You can email me, and I would even be willing to call and talk over the phone if you were willing to set up a time for that. Thanks so much! Rebecca
Please email me! Jamieschoenberger@gmail.com
Oh, and I would like to hear about this doctor, also! 🙂