Riley and I are going to hit the road tomorrow to head down to Charlotte to see Dr. Parrott.

I have a million questions and hope he has blocked out a couple of hours for us ok, not quite a million but close.

Riley was laying in bed last night when we got home, I noticed a black looking spot on the bottom of her foot so I looked closer, the child had 6 pieves of glass in her foot. Where that black looking spot was it was unbelievably deep. I got the little ones out which were just below the surface, the last one was really really deep. Those pieces must have been in her foot at least a week, if not longer and she hasn't felt them. Britt broke a lamp about a week and a half ago, I assume thats where they came from. It breaks my heart to know that her CMT is progressing more along with every thing else.

Good news time too- her stroller/wheelchair should be here in about 2 weeks. We have been carrying her around when need be or using her old broken one for short trips. I am so thankful when stuff works out quickly. I can't say enough good stuff about the company we ordered from. They have been so ontop of things and have gotten Rileys equpiment to us so much quicker than the last vendor we went through.

More crummy news,

The seizures still are relentless although she had a 4 day period with no seizures they are still coming daily. I can't get past seeing Dr.Parrotts words stating the VNS hasn't been beneficial ...yet.

I think we need a med change...

I have a strange question though-
Over the last few days Riley has had more of those seizure that affect the left side of her body and since then she has complained about her ears hurting her, but it isn't like an ear infection it is more noise related. She will scream and hold her ears and say her ears hurt...

Any ideas? Coincidence with the seizures? Or is it related to them, Rileys have always affected her RIGHT side so all of the reading I hace done has been pretty specific to that. This is just weird.

Well, I started to reply last night, and it just didn't happen. This is one of those "I don't know what I'm talking about, but it should give you something to think about" kind of posts, if you know what I mean.

So, as far as the hearing goes... you say it's not an ear infection. Did you look in her ears, or is it just because it's not her typical ear infection symptoms? We just got through with swimmer's ear. First time I've dealt with that, and the symptoms were different from a typical ear infection. While it doesn't really sound like swimmer's ear, I like it the best of all the thoughts that popped in my head.

I did a few searches (very few) last night. Somewhere I read that CMT can result in hearing loss. Somewhere else I read that sometimes with hearing loss, your brain fills in the lack of noise with noise.... must have been when I was looking up tinnitis - ringing in the ears. I keep thinking that Annelb over on the GF/CD forum has tinnitis? and it's gotten a little better going GF? If I remember correctly (and I can't look it up since it's on the original BrainTalk), she doesn't think it will ever go away since too much damage was done from all her years of gluten / malabsorption. I almost think someone else over there has had their tinnitis disappear completely from going GF? Anyway, it wouldn't hurt to post a question over there.

Last thought on ears... don't some autistic kids seem to have super-sensitive hearing? And I keep thinking sometimes it can be helped by listening to some special audio tapes? (Obviously, I know nothing about it... just heard / read a bit somewhere.)

I lied... one other "ugly" thought. I think the tinnitis site I was perusing mentioned it could result from a tumor. I could see a tumor also affecting seizure left / right changes. Yeah, I don't like that thought either.

About the glass in the foot! Wow! I hope there is no infection going along with it. I have to say, I had really hoped GF would halt the progression of CMT.

Sorry for the downer of a reply. I hope you have a productive meeting with Dr. P. (((Hugs)))

Thanks for the thoughts..

I have not considered the CMT affecting her hearing, although I know it can, just haven't thought about it. She failed a hearing test about a year ago, but when we went to the audiologist her hearing was fine. I *think* the reason she failed was lack of understanding on her part of what the nurse was asking her to do. I read all I could at that time and came across several articles mentioning hearing loss and CMT.

I just wonder what "ringing" would feel like to a delayed child? Sort of like the "itchy" feet that led Dr.Parrott and her ped to investigate and dx the CMT.

The last Email from Dr. Boyd suggested that we get a baseline for the school year then load her up on gluten and document the results. So, once again let the experiment begin.

I asked Dr. Parrott about hear ears hurting and he didn't really know what to tell me, but I asked really leading that I thought it had something to do with the massive amount of Topamax she is on (now she is up to 350mg a day)
So as soon as the peds office opens bak up from lunch I am going to call and see if we can get in and talk to them about it.

I found it! Ummmm, maybe you didn't want me to?
http://www.topamax.com/utilities/ima...x.pdf#zoom=100
Page 5, Right column, Table 7: Tinnitus and Topamax. I *think* you read that as 2 people out of 171 (N=171) experienced tinnitus while taking 200mg/day versus 0 people out of 92 on the placebo. (At the bottom of page 5, in the left column, they explain a little about the test.) It's also in Table 10 (page 6, right column) which seems to be a list of all side effects seen.

If they're using 200 mg/day as their high test... 350 mg/day is really a LOT! I hope her bicarbonates are being checked regularly? (I read the bit about acidosis before wading down to find tinnitus. I wasn't sure if tinnitus was associated with acidosis or not, but it wasn't mentioned.)

One other thought... and a much happier one at that... the reason I thought of swimmer's ear is because both girls just had it. Samantha told me her jaw was hurting when she bit down on something, but it was her jaw near her ear. I immediately decided it was ear pain and her body was misinterpreting the pain. Any chance Riley has some back teeth coming in and she's confusing the teeth pain with her ear? (See? Isn't that a nice thought? )

Anyway, I guess I'm with you on thinking it's the Topamax. And, I know it's been the best drug for Riley. Sorry.

Failing the hearing test... I was talking with someone? Reading somewhere? just recently and someone posted they failed the test (or their child) because of the instructions. Something about they were told to raise their hand when they heard a "buzz" and they only heard "beeps" so they didn't raise their hand. (I know I have the "buzzes" and "beeps" wrong, but you get the idea. If they had been told, "raise your had any time you hear a noise," it would have been okay.