things are getting a little better!

[andromeda31]

Hi!

Week 2 of the new drug...so far so good! I did decrease the depakote per the dr orders and had reduced the topamax morning dose from 60mg to 45mg (15mg pills) on my own. One more 'step up' and she will be at the full dose of the felbatol. Her behavior has improved quite a bit and we notice she seems more with it cognitively. She had a PT session on tuesday afternoon and I stayed in the room with her. It actually went well! Her PT said this is the most she was able to do with C in a LONG time! The other good thing is that was our last afternoon appt. Summer school is over tomorrow and we will go back to our 7am time. C is freshest in the morning so hopefully I won't have to sit in with her to get her to behave. Another good thing is with Logan starting prek in sept, if I have to sit in with her, it will be a lot easier with not having other kids along! A big thing has been her AFO's, she turns her feet out SOOOOO much that they really bother her feet. We tried botox in her peroneals last yr with moderate success. But the dr in April didn't seem to think she needed more. Well, today we had an appt with our orthotic maker...he had lots of great ideas! He casted her for new AFO's too! Yay! She will have ones with a hinge in the ankle soon! That will allow her to move her foot up and down but still keep it from turning out. Our hope is that she will tolerate them better and keep them on for longer during the day. I also said how I had tried to put them on her at night thinking she would sleep thru and not notice them (didn't work!). He said he might have something like a soft brace that velcros on that we could do on her feet at night. I am excited for that! We have 3 wks to wait for the new stuff. Dentist and eye doctor appointments for Caitlin next week...getting ready for back to school! Still waiting for the new footplates for her wheelchair...the insurance people probably are saying, "how dare she actually grow taller!". Hope we get them before school starts so she can be seated properly.

Lisa O.

[funnylegs4]

So glad to hear things are improving for C! AFOs with an ankle hinge is certainly a good idea! I had AFOs with an ankle hinge and they are way better than the kind with no hinge. The ankle doesn't totally lock up. I had a lot less tension. You might want to consider sheep skin padding for the part that actually touches her foot. Way more comfortable. Never heard of a soft night brace but it sounds interesting. Let us know how it goes with the night brace. Good luck!

[Earth Mother 2 Angels]

((((((Lisa & Caitlin))))))

What a great update with such good, positive news! YAY!

Proof is in the pudding ~ her behavior is improving as she's getting less Topamax (and maybe even Depakote). I'll continue to pray for this excellent weaning trend to continue and for the Felbatol to work effectively with no side effects.

YAY! for your orthotic maker, who thinks outside the box! Hope the new AFO's work well, and the soft ones for night time are just perfect!

May the wheelchair footplates arrive pronto!

Keep the good news coming!

Love & Light,

Rose