Sanfilippo Sucks.

Jayden and I ventured down for a sleep study at children’s the night May 13. Basically, we had to be there at 6:45 and spend the night as they hooked Jay up with wires and video monitored his sleep. He had one wire on his toe, 2 on each calf, one on his back, two on his chest, 4 on his forhead, about 15 in his hair, a breathing tube under his nose, head wrap (like a sticky ace bandage) to prevent him removing the wires, and after one unsuccessful run with no arm restraints (he pulled all the head wires off after the wonderful nurse for 20 minutes applied all 15)–we ended up using arm restraints for the entire night.

A normal night at the Boyce home consists of him waking up around 12 and crying out and around 2, he enters into our room and sleeps on the floor. Sometimes it is better, sometimes it is worse. He goes to bed between 9-10 PM and wakes at 5:30-6:30 AM on average.

The sleep study was to try to figure out possible reasons that he could be waking. (Duh-it’s one of the MANY problems associated with Sanfilippo). But-we wanted to just get more infomation.

We got the results back today and it appears Jayden has sleep apnea. There are moments where he briefly stops breathing in his sleep and this could be causing him to wake up. Not great news. We are going to see the ENT to possibly get his tonsils and adnoids removed to clear the airways. This would mean a more intensive surgery and anesthesia. Things we do not like.

Well-another hurdle…..one of many. Not the first. Not the last-God willing.

We also have his IEP meeting at 8 on May 20. We need to have him in school year-round so he doesn’t loose any skills that he has over the summer as most kids never re-gain what they loose.

2 more reasons Sanfilippo sucks,

PS did I mention the one “hope” for slowing down the progression of Sanfilippo-genistein-a supplement they have been showing good results with…the company is not selling it anymore to parents. They manufacture it for menapausal women, not children with Sanfilippo so they don’t want it to be a liability issue…like a terminal illness isn’t?

3 reasons Sanfilippo sucks.

I have seen many blessings this week. Huge support from the community. Love beyond measure. For us. For our children.

Still doesn’t change the damage that sanfilippo is doing.

Sanfilippo…….you suck.

3 thoughts on “Sanfilippo Sucks.

  1. We might be heading to IL this summer….if you send me the name of the med I can check here (Mexico) and see if it is one of the many over-the-counter drugs available? Just a though….pray about it!
    Kathy Gouzoules
    My email is CKGouzoules@yahoo.com

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  2. Oh Stef, I am so sorry, maybe some of the “middle aged” women that you know can be perscribed the medication…. just a thought. Praying for you! Love you!

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