Dante sleeps safe and sound

With progress come new challenges.  We are on week 3 of the Modified Atkins Diet (MAD) for seizures and the process has had its ups and downs.  On the 'up' side, Dante's motor skills have returned full force, he finally has his typical energy and his communication and attention have been great.  His seizures are fewer and much milder, and we have seen very few of the stronger type since on the diet.  He may still fall down, however, even after a quick nod.  That is where the difficulties remain.



Dante works on addition at school



While on Topamax for his seizures, Dante had no strength.  He may have woken up during the night but he would remain on his bed and not move.  Now that he's much stronger he may get up from his bed, open the door, turn on his light and go play with his toys.  As soon as he's off the bed there is a danger of him hurting himself if he were to fall.  Even though his falls have been softer lately (many like in "slow-motion"), he may still fall.  Unfortunately we experienced this on two consecutive mornings this past week when Dante happily got up before us.  It wasn't long before he fell in his bedroom and we heard him crying softly.  That is a super stressful way for anyone to begin their day.

That experience consumed us as we thought of different approaches to keep Dante safe.  My husband stressed getting any hard furniture out of the bedroom.  I was focused on either some way to warn us he was up, or some way to not allow him to leave his bed.  Of course the brainstorming in my head was happening between 4 and 5am in the morning, well before Dante awoke.  Necessity is the father of invention, indeed.  I am so proud to present the solution to Dante's bedroom safety concerns:

Great low-cost solution for Dante's safety!



Place Dante's mattress inside a tent!!!  You cannot imagine the peace of mind this solution has brought to our household.  Dante’s twin mattress fits perfectly inside with little space for any dangerous falls.  Plus, he loves his “little house”, it is so cozy inside.



But as we’ve lived so often, our next challenge is never far behind!  A key problem brought on by MAD is constipation.  The diet is high fat and very low carbs (10g the first few months), so although I give him high fiber/low carb veggies, he still may not be getting the amount of fiber he needs.  If Dante is constipated he gets rash, he can’t focus well, and his seizures increase, which is exactly the opposite of what we’re trying to achieve.  So this whole past week we’ve been testing Miralax laxative, Dulcolax suppositories, a CALM magnesium supplement, and glycerin suppositories, all in an attempt to get him back to regular bowel movements.  It was very interesting to see that as he cleaned out his bowels, the number of daily seizures greatly decreased.  He has not been very comfortable with any of these options, though.  So I’m tweaking the alternatives to see what keeps him regular but doesn’t give him cramps.  This is so NOT fun.

Dante is very cozy inside his little house

On the other hand, Dante’s new found motor strength has brought with it a very useful ability:  hugs.  My dear son takes all the loving he can get, which makes him quite popular with his caretakers, but now the boy can give.  I was teaching him to put his arms around my neck and he, finally, started doing it on his own initiative!  And he is so grateful, his assistant at school tells me he now hugs her and gives her kisses – and always at appropriate times:  if you feed him, take him to the bathroom, teach him or play with him.  Isn’t that so precious?  Dante is a grateful little angel and that makes me so proud.

So hugs, kisses and laughter will be my pay as we labor on to help Dante heal.  We’ll take any little positive to outweigh all the rough days he’s had.  Please keep Dante and all the special children in your prayers.