Post Tongue Tie Release / Topamax

So the tongue tie and lip tie surgery was easy and quick and I love this Dr. Simms!  He is so nice and he told me after surgery that her tongue got about an inch longer when he cut it.  I got the feeling that he thought that that was a really good amount (he showed me with his fingers so this is an estimate).   It was a very easy recovery, healed within a few days, and no real pain for her just some Tylenol for two days.

So here we are a few months or so later and we have not seen any miracles but I feel good knowing that she most likely had tension released from her head, if not her whole body, and that her tongue is longer and not restricted.  With therapy, she may gain some words in the future.  She did say "yeah" three times the other day appropriately, so that is a good sign in my eyes!

Katie's chiro had her own tongue tie released a few years ago and said that the older you are, the longer it takes to see results.  So we will just wait and see.  I think this is just my life motto now.

TOPAMAX

In the past three to four weeks I have given Katie Topamax, increasing the dosage gradually and she has been on the full dose for over a week now.

If you look this medicine up you will see all kinds of terrible side effects. Holy Cow I was nervous to give this to her especially since she can't tell me if she feels nervous, or her head feels foggy, or she has headaches or tingling sensations etc...  So we tried it and she seemed ok until this past week at the full dose.  She was crying for no apparent reason and I don't know if it's just hormones coming on from being 13 (oh yeah!  She had a birthday!) and I didn't want to take her off of it if I wasn't sure.  She was doing better at PT and babbling a lot since being on this medicine, but I wasn't sure if it's from this medicine or not.  The reason we put her on it is to help her with her movements, make then smoother, and help her balance, and I didn't see any improvement with that.

A few days ago I showed her the medicine and said, "Does this help you?" "Do you like this medicine?"  "Do you want this?"  "Does this make your head hurt?" And she would nod her head for yes and do nothing for no, which is normal for her.  Then I asked her with her device (iPad with yes/no buttons) and she pretty much summed up that she doesn't like the medicine and that it hurts her head. So I stopped it completely a few days ago and was like, "God, please let me know this is the right thing to do!"  Because, really, what do I know?! 😕

Today, I took Katie into school a little late because she needed a surprise bath this morning 😑, and in the hallway one of the teachers approached us and said hi to Katie.  She stopped and asked me if Katie was feeling ok as she seemed less animated and much more subdued lately.  Ok! Well there was my answer!

I guess we are on the right path for now. Here's to hoping she feels much better and back to herself soon.