Hello!

Well a few days turned into about 2 months... 😖

In October, Paul and I went to Northwestern University to see Dr. Swanson and his lab.  He showed us one of the mice that he had given Katie's mutation to and when he picked up the mouse it's legs were shaking and it clenched it's hands and feet.  Paul said, "That's what Katie does!" She tends to clench her feet and used to do it with her hands somewhat, too.  Not the shaking part though.

When he picks up these mice their legs shake which is not at all a normal thing for a mouse.  Another thing that is different about these mice is that if you give them some paper a typical mouse will shred it and make a nest.  These mice do not. However, when we got home from that trip Katie got into some paper and spent about an hour tearing it up, lol!  I don't know what that's all about.

It was such a good trip and we are so lucky to have such a great scientist working with us to help Katie.

He said that the hope is that in 5-10 years they may be able to change Katie's mutation using a CRISPR method.  It is how they gave the mice Katie's mutation.  It's not safe on humans yet, but hopefully will be in the near future.  What that means for Katie we are not sure especially since she will be older when this might be able to be used.  But if they can change her mutated gene it probably will help her somehow.  I can only hope! Link: CRISPR
#scienceisawesome

I'm back! Briefly...

Ok, so the bald spots are gone!

I have a lot to say but it may be next week. Just been busy! Here are some cute recent pics:

Halloween 2019

Christmas 2019

Bald spots!

I was giving Katie a bath and washing her hair and noticed two bald spots on top of her head! 👀 YIKES!

They are each about the size of a dime and right next to each other.  Of course I Googled it immediately and freaked out!

I called her naturopath doctor and he said we needed to do blood work. A few days later Katie was going to be at a dentist appointment where she would be under anesthesia, so I got it all scheduled in advance to have her blood drawn then too.  Otherwise it's a fight.  Thank God for this dentist:  Dr. Herro!
He is really so awesome beyond just letting us do blood work while she's "out".  https://www.dentaloncentral.com/

We just saw her primary doctor yesterday and Katie's labs were nothing to be concerned about so that was good news.  The doc says it's tinea capitis which is basically the same thing as athlete's foot, but on the head. A fungal infection.

"Tinea capitis is a disease caused by superficial fungal infection of the skin of the scalp, eyebrows, and eyelashes, with a propensity for attacking hair shafts and follicles The disease is considered to be a form of superficial mycosis or dermatophytosis."

"Ringworm of the scalp is not really a worm, but a fungal infection. It gets the nameringworm because the fungus makes circular marks on the skin, often with flat centers and raised borders. Also called Tinea capitis, this infection affects your scalp and hair shafts, causing small patches of itchy, scaly skin."

Uggghhh!  My kid has ringworm!  I guess it actually sounds worse than it is, maybe that's why the Dr. called it tinea capitis 😆

I am going to pick up the medicine today in 2 hours and as soon as she's home from school - she's getting it.

How in the heck I didn't notice this sooner is beyond me! Her hair is always in a ponytail so that probably didn't help. Poor kid. 

Summer

Katie's been out of school since the end of May.  Summer is hard for  me because I still have to do data entry throughout the day for my husband and Katie can require a lot of attention. I did find a summer program for her that is 9-5 👌but the first few days were rough.

 I wasn't sure if she didn't like it or didn't feel well or what as she cried the first two days when I put her in my car. Ugh, it's so hard to have to guess.  Turns out she had a temp but no other symptoms the doctor could find.  Also I was making a dentist appt. for her and they looked at her xrays and confirmed that she has molars coming in which probably doesn't feel good.  AND... she is 13 and even though no big signs of maturing, she probably has hormones kicking in 😔.  On top of that I think I just left her there too long so she was exhausted and went to bed at 6 the first few nights!  Not that I didn't enjoy that. 

So we have most of these issues under control now (except the hormone thing) and she has been better although scratched people one day.  My sister reminded me that her daughter was kicked out of pre-school for biting so that made me feel better!  lol!

So things are good, she is growing and doing as well as can be. Still a sweetie 99% of the time!

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.

Tongue and lip tie

Several months ago I had the TV on and a story came on the news about a boy in Texas who has some special needs, he couldn't talk very well or say many words.  He went to the dentist for a routine check up and the dentist found that he had a tongue tie. The dentist lasered it and the boy started talking that night.  As you can imagine I thought and said out loud, "Maybe Katie has a tongue tie!"

A few days later I took Katie to her chiropractor Rebecca Kleckner, (who I can't say enough great things about) and this story about the boy in Texas came up.  She had seen the video.  Looking in Katie's mouth is not an easy task (or getting through any kind of doctor appointment for that matter) but Katie laughed really big and Dr. Kleckner was able to see in her mouth.  She said that she thought that she did have a tongue tie because her tongue was flat and came up on the sides,  like a taco - as if something was holding it down.

"Tongue-tie (ankyloglossia) is a condition in which an unusually short, thick or tight band of tissue (lingual frenulum) tethers the bottom of the tongue's tip to the floor."

In my layman's terms: It's the thing under your tongue (frenulum) that connects your tongue to the bottom of your mouth, and it can be too tight and restrict movement which can cause speech issues and more. Sometimes it's closer to the tip of the tongue (very easy to see), sometimes it's at the back of the tongue and hard to diagnose unless someone sees it who has been trained on what to look for. The latter is what Katie has and it is called a posterior tongue tie.  I'd post some pictures I googled but they make me want to pass out so I will not do that to you. Google away!

Texas boy video

Texas boy story

Dr. Kleckner knew of a dentist (Dr. Ashley Bower) who travels around the area and does the tongue tie surgery with a laser, so we met with her and she confirmed that Katie does have a tongue and a lip tie.

"Lip Tie is a congenital condition wherein the presence of an abnormal frenum, between the lip and the front teeth mostly in the upper jaw, may result in pain, eating or speaking difficulties, or even cause the gum to recede.  It is a common condition that is correctable through surgery, when needed." 

My version: A lip tie is the piece of skin between your lip and gums on the top and bottom of your mouth, it can be too tight and cause problems.

So Katie has surgery in the next few days and I am hoping to see some results.  I am not expecting her to come out talking but maybe it will, at the least, help her with more sounds.  All she can say now is the m's and b's and once in a while a yeah.  You don't need your tongue for those, so I have a little hope!

"Your tongue is such a crucial part of your body.  The neuromuscular system is intertwined with the brain, digestive system, neck, spine, and teeth."


Tongue Tie Developmental signs

* Delayed speech, problem with certain letters or sounds
*Lisp
*Food and texture aversions
*Tooth decay
*Gagging or choking
*Squirreling food
*Difficulty talking fast
*Can't move tongue past lips
*Jaw joint and posture
*Jaw pain
*Migraines
*Neck and back pain
*Forward or slumped posture

 These procedures might help Katie with a lot of her issues including:

*breathing through her mouth (it's always open)
*speech
*balance
*jaw tightness
*drooling (I think the lip-tie might help this)
*constipation (I can only hope 😏)
*texture aversions

And I wonder if it will also help with things such as not being able to purse her lips together, not really being able to lick anything, and clenching her toes most of the time.  From what I've read it should instantly relieve tightness in the head, neck, and shoulders, and I bet throughout the whole body.  It will be interesting to see if it helps this.  I've seen videos of adults who had the tongue-tie cut who say that as soon as it was cut, they felt all of this pressure and tension leave their body.  It helps with headaches too and sadly I have no idea if she has these.

We are not going the laser route because it will be an open wound that can re-attach so you have to stretch the tongue every 4-6 hours for 6 weeks afterward and if you know Katie, not going to be easy!  I think they do this mostly on babies who can't kick and hit and spit at you.  And adults.

So we found an excellent ENT  - Dr. Simms, who will put Katie under anesthesia and put stitches in that go away and she should be healed with no pain in 3 days - we'll see!  He is also going to see if her adenoids have possibly grown back and if they have, take them out again.  This can be a cause of her mouth always being open, I believe.

I am crossing my fingers and hoping some good things happen for this girl!

Busy

I've been so busy with my data entry job (for Paul) that I haven't been able to find the time to write on here.  I keep threatening to give my two week notice 😄.

Katie is having tongue-tie and lip tie surgery next week so I will write about it  probably next weekend.  Hers is a posterior tongue tie (in the back) so not a noticeable thing. It's fascinating what the tongue tie release can help her with, crossing my fingers! 

Funny!

Here's a funny recent video:

throwing

I hope to have some new info tomorrow regarding Katie and will try to put it on here by Friday. 

Thanksgiving

Tomorrow is Thanksgiving and we put our tree up a few days ago.  Out of the box and plugged in, no decorations yet.  Hopefully this weekend. Ornaments are free from Katie's grasp for a few days. We have some new developments with Katie concerning a tongue and lip tie.  This is very interesting and exciting and I will write about it next week. Happy Thanksgiving! 

Achoo!

Some good news about Katie and sneezes - it's always been an issue when she sneezes and is sitting at a table, her head hits the table. 😩  So, I have noticed in the past few weeks that she has sneezed and not hit her tray on her chair, nice!

She liked sitting at our island in a bar stool the few times I put her there and now don't feel as worried about her hitting her head on our granite, although still a bit leery of course.  Baby steps.  I'll be ready to grab her head if she sneezes!

I hope to be posting next week about another issue (bigger than sneezes) that could help her a lot.  Waiting to hear back from the doc.  Happy Friday!

Update: Well, a few days after I posted this Katie's teacher sent a note home saying she sneezed and hit her head on the table.  😑 Stupid Murphys Law.  

 I have a t-shirt that says "Repeal Murphys Law".  I love that thing, thanks Mom!