Monday, March 25, 2013


I've never considered myself to be a proponent of alternative medicine, homeopathic approaches, all-organics, "I only eat meat if it was fed green blades of grass on a spring water-fed farm," etc. However, I've come to realize that a few of these approaches may be helpful when it comes to our little Sadie.

After doing a lot of research , we've decided to trial Sadie on a blended diet. She will continue on her ketogenic diet for seizures, but we're going to try it with blended "real" foods as opposed to formula. In order for it to remain ketogenic, the recipes will still be high fat, consisting of some heavy cream and oil. But, we'll also be able to add in real meat (chicken, turkey, pork, beef) as well as a variety of fruits and vegetables.

A wonderful "must read" for
any parent of a tube-fed child.
There are a few reasons we're making this switch. As I mentioned in previous blog posts, Sadie's GI motility issues have been getting progressively worse. (Or, in layman's terms, she simply doesn't poo on her own). With the exception of one miraculous day last week, it's been eight months since she's pooped without the assistance of a suppository.  She's been to numerous GI doctors, has had a variety of laxative treatments, and recently underwent an anorectal manametry study - which came back completely normal. Our hope is that these GI issues improve with the introduction of real food. Additionally, it will be quite nice to feed her similar things to what we ourselves are eating. For example, this past weekend, we had chicken salad and Sadie "ate" a blend of chicken, celery, cream and oil.
Our new Blendtec blender for
blending Sadie's food

This decision was guided, in part, by a fabulous book called Complete Tubefeeding, which I initially heard of from a few other parents. I now consider it a 'must-read" for any parent of a tube-fed child. While undergoing this research, I learned that the best way to deliver a blended diet through a G-Tube is by using a commercial-grade blender. Commercial grade blenders are able to blend almost any food into a thin, chunk-free consistency that is able to easily be pushed through the opening for the g-tube. We are loving our new Blendtec blender - which I hear is also fabulous for making smoothies (send your recipes my way :).

In addition to the ongoing GI issues, Sadie still has a few days where she fails to urinate on her own and requires catheterization. Another Aicardi parent (and nurse) mentioned the use of Peppermint Spirits to aid urination. Apparently it can aid in the relaxation of the GI muscles...who knew? So, we have been putting a drop of this oil in her diaper and it does seem to produce results!

We are also excited to start Cranial Sacral Therapy for Sadie in the next few weeks. We have heard anecdotally from other parents that while it may seem a bit like hocus-pocus, their children come out of therapy so much more relaxed. Whatever helps Sadie relax, I'm all for! So, we're giving it a try - and I'll be sure to report results as she gets further along.

Another alternative medicine technique we have been trying is the use of frankincense oil for her seizures. Seizure control has been an ongoing problem with Sadie. She is still not in a great place after trying 13+ seizure meds. The few nights I've put a drop on her big toe before bedtime, I didn't see any change in seizures, but I figure it can't hurt!

As for the seizures, we've been trying to hold steady with any changes in her seizure meds, as we await a second MRI to check the functioning of her shunt. When she was undergoing her GI test mentioned above, the hospital took the opportunity to get a full MRI of her brain while she was under anesthesia.

A shunt-series x-ray
We received a call at home the evening after her MRI. (You know its not good news when a neurosurgeon calls you after-hours.) The MRI showed her left ventricle was enlarged. This could be an indication that her shunt is not working properly. We went back to the hospital the very next day to get a shunt series x-ray (where they xray down the shunt line). While the x-ray looked normal, the neurosurgeon noticed a lot of gas in her belly. This could have been caused by the intubation during the procedures, or she could just be an abnormally gassy child.

Either way, the neurosurgeon suspects that perhaps the shunt is not draining properly due to the increased pressure in her belly, and thus is causing the enlarged ventricle. It's crazy how all of the processes in your body are connected. So, tomorrow, Sadie goes in for another MRI to check the ventricle size. Please say some prayers that the ventricle size is decreasing. The poor girl has had enough surgeries in the past few months.  Besides, we are hoping to spend Easter with family and not in the hospital.

Needless to say, when seizures are not good, sleep is not good. We've tried the aromatherapy approach by hanging a bag of lavender on the side of her crib to help with sleep, with minimal results. So, we were excited to learn a few weeks ago that we got initial approval from the state to employ a CNA (Certified Nursing Aide) to watch Sadie overnight four nights a week. After three years of interrupted sleep, I could just cry with delight. 

Finally, we are in the home stretch of deciding between two alternatives for Sadie's schooling. We have toured both schools and think either would be a good fit and equally equipped to handle Sadie's complex needs. For children with special needs, home therapies end at age three and therapy and education continue through the school system. So, Sadie will begin school on her 3rd birthday (April 29th) - yikes! I can't even think too much about it without getting emotional.

So these are the alternatives we are trying so far for Sadie. We hope they'll work as advertised...just stop me when I pull out the crystals.

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