Friday, December 21, 2007

Your Advice Please

I don't know why, but I have been debating for a while whether or not I want to blog about this. I blog about almost everything, so I'm not sure why I've had a hard time deciding if I want to talk about this or not.

But, I've decided to go ahead and tell you what has been on my mind just about 24 hours a day lately. This post will probably be kind of long, but I am just really hoping someone somewhere might have an answer or know someone who might have an answer.

On to my concern- sometime a little while after Hailey turned one I noticed her doing something odd with her eyes. When I would be rocking her to sleep her eyes would turn up towards the right side of her head. At first I thought- well, she's tired and her body is just relaxing and her eyes are rolling up as she is falling asleep. I did ask her doctor about and she agreed with me- totally normal.

A couple of weeks later Hailey did it one day while in her car seat and then again while in her high chair. Both times she was tired when she did it, so I still thought- maybe it was a tired thing. But, the way it looks is unusual- her eyes go up so far that you can see mostly the whites of her eyes and only a little of the actual colored part of her eye (which I'm sure has a much more technical name).

Then she started doing this little head bobbing thing where she moves her head so that her ear almost touches her shoulder. (It does not happen at the same time as her eye movements but it is just another unusual thing). She was sick with a cold at that time so I thought maybe her ear hurt. We went to the doctor and her ears were fine. I explained the things she was doing. I had a done a little Internet research and found something called Paroxysmal Tonic Upgaze which seemed to kind of describe what Hailey was doing. I told her doctor about it, she had never heard of it but went and looked it up. She wasn't sure because she said Hailey did not meet all of the criteria. But, she referred us to a pediatric ophthalmologist.

That was all right before Thanksgiving. I made her appointment with the eye doctor for Dec 17th. Then I actually didn't see her doing it much anymore and thought about canceling the appointment. Well, last week when she was sick she started doing it a lot more. Whereas before I might only see it a couple of times a day- or not at all- I've been seeing it quite a bit. Now they are not only turning up towards the right, but to the left as well. And, sometimes they do a little roll right across the top. It is very quick- seconds at the most. It happens and she closes her eyes and they are back to normal. While she has been sick it seems like sometimes coughing triggers it. The other day she fell and bumped her head and then did it several times after the bump. While she used to only do when falling asleep the last few days I've seen her do it right after she wakes up too.

So, anyways we decided to keep the eye doctors appointment. He asked us lots of questions and watched Hailey for a while to see if she would do it. (Of course- she did not)

A bit more information about what she does: When she does the eye rolling she doesn't have any other unusual movements with her arms or legs, which should rule out seizures. The frequency of it really varies- there have been days I haven't seen her do it all. While she's been sick I have seen it as many as 20 times in a day. She doesn't act like it bothers her- just blinks her eyes and then they look normal.

The eye doctor's opinion was that she does not have this Paroxysmal Tonic Upgaze that I found on the Internet. (although he gave me compliments on my intelligence for finding the information about it, and asked me if I had a medical background. I'm sure that's a normal thing- tell the parents how smart they are so they don't feel stupid for bringing their child in).

He said he'd been practicing for 17 years and had never seen it and in fact he only knows of 14 confirmed cases. So, it would be very unlikely that she has such a rare thing. Although, someone has to have it, even if it is rare.

He said he had 2 ideas of what he thinks could be going on. First- dry eyes- she's rolling her eyes up and blinking to moisten them. I told him there is no way it is that. Of course, he hasn't see her do it, so he can't quite understand.

His second idea was that it could be a childhood tic. He said a lot of kids have tics and do things with their eyes and faces and usually outgrow it. I do think he has a point about a tic, but then I wondered why Hailey's pediatrician never even suggested that when I was explaining the symptoms to her.

Another thing I have noticed Hailey doing (since the appointment, so I haven't told the doctor this) is sometimes she tips her head down towards her chin and looks up at me out of the very top of her eyes. At first I thought she was being silly, but now I think it's an involuntary thing with her eyes and so she has to tip her head in order to see me. I don't know if that even makes any sense because it is so hard to describe.

I'm trying really hard to get it on video but it happens so quickly that it hasn't been possible yet. I found something on Youtube about Paroxysmal Tonic Upgaze and if you go here you can watch it. It's over six minutes long, but it's about a little boy who does things very similar to what Hailey does. He also has seizures though, which Hailey does not. And his upgaze tends to stick longer than Hailey's- so they were actually able to get him on video doing it.

The eye doctor said that even if she had this Paroxysmal Tonic Upgaze that there is nothing that can be done for it. Kids outgrown it and it is completely benign. He said we could put her through all kinds of tests (MRI, catscan, etc) during which she'd need anesthesia (a major risk in itself) and find nothing. But, basically he told me to stop worrying- she's fine and on track developmentally. But, of course I am still worried and every time I see her do it I feel sick to my stomach with worry.

As my friend Kellan would say- On the upside- I've lost a little weight because when I worry I don't eat.

But- I'm just hoping that maybe someone might know something or know someone who knows something to help put my mind at ease.

If you're still here reading- thank for your time.

Don't forget to check out my other blog- Livin' With Me.

19 comments:

Talk..to..Grams said...

I have never heard of this before, but I know you have to be worried.
I think you were smart to research on the net to see what is going on with her eyes. I will pray that you have peace about this..... and that you can find more out about it without a lot of tests.... I hope you all have a nice Christmas and a Blessed New Year! Love and Hugs, Grams

JenLo said...

If it were me, I would take her to a pediatric neurologist, just to rule out something serious. Just because you don't notice anything other than her eyes, that does not rule out seizures and you would want to make sure it isn't related to something like that. If the neurologist says it's fine, then I wouldn't worry.

And the tic thing could be something, although I would think she was a little young for that. It could be just a comfort ritual she is doing.

But follow your instinct, otherwise you are going to worry. It's much better to check it out and find it's nothing.

Kellan said...

I agree with jenlo. If it is not eye related and you can rule out neurological related issues - then you can stop worrying. It sounds like a tick to me. I have a friend that has a daughter that has very mild terrets sysdrom (I don't know how to spell that) and she has a few ticks that she does throughout the day, but your barely notice unless you are looking for them - she does this dipping thing where she bends over and touches the ground or her knee and then stands back up, but it's a tick and she doesn't even realize when she is doing it. It sounds like your daughter's might be a tick also, but a neuorologist could determine that also. Keel looking into it, that's what I would do - make sure everything serious is ruled out and then you will be able to relax. I don't think I would go to all the tests for Paroxysmal Tonic Upgaze, but I would get several other opinions from other doctors. I hope you figure it out soon so it won't be worrying you anymore - I hope it's not serious - you know I hope that! TAke care and I'll talke to you soon. Kellan

Kelly Malloy said...

I would get a second opinion -if they say it is nothing (which it sounds like it is not) then you can stop worrying.

I say to get a second opinion because my first pediatrician kind of brushed off my concerns with my 2nd child, whereas his next doctor let me know that he suspected problems and sent him for testing and we found out he has fragile x syndrome, so trust your insticts first.

Regina said...

Hey there, sorry you are so worried, totally understandable. I pray that you have some solutions, explainations, and closure soon.

I would get a second, and third opinion. One doctor has brushed you off, another has said it's very rare, but rare means possible. For your own peace of mind keep taking our baby in until you get some answers.
By the way you need to eat, I can't worry about you and Hailey.
If you need me call, look in the book.
I'll keep praying...

Leeann said...

Hey Melanie,
Sorry I haven't been over to visit your page in a while. Kellan suggested I come read this and see what I thought. I am a "newborn" in the medical field, but have seen too much as a Mommy. My first instinct was seizures, also, but without any body involvement, it seems unlikely. Tourette's is another suggestion that seems plausible, but she is quite young for symptoms. Neurological things scare the crap out of me. I would suggest a consult with a pediatric neurologist or a neuro-ophthalmologist immediately. Even if it turns up absolutely nothing, your peace of mind is worth it.
PLEASE keep us up to date.

Crys said...

Mothers have an instinct that Doctors (even with all their training) just do not have. We know our children. If you are still worried, and I believe you have every right to be until you get some definate answers, I would take her to a Pediatric Neurologist. Get the MRI/CAT scans... and when they come back normal you can stop worrying. Otherwise, you will at least have some answers to what you are dealing with. You are the best advocate she has. Until you're satisfied, don't stop!!

Best of luck. I will keep you and Hailey in my prayers.

Merry Christmas!
~Crys

Pam said...

Oh Melanie! I am so sorry that you have been carrying this burden....you know you can share anything with us! That is what this wonderful community of blogging is for - we are always here for you! My heart goes out to you! I can only imagine the worry you must be experiencing!

I really don't know what to say....I am not good at this. I initially did tell you that I thought it was nothing...but now that it is happening more often, I would be worried to. I do know that when you are sick- things tend to get worse (for example, Ashlyn would bang her head to sooth herself--when she was sick, it was much worse). I am shocked that the pediatrician blew it off....I feel better about the eye doctor because he took time to ask and answer questions, etc. But there is certainly no reason you can't get a second opinion or look into it further. Even if there is no treatment- I always feel better when there is a label for something. When you have a name- when you have a diagnosis, then at least you can accept and embrace it and move on.

I'm sorry that I am not more help here! You know where to find me if you need to talk more. If it helps any....I'm worrying with you! I will be praying for your beautiful and amazing daughter!

Sharon said...

My older child has a problem wwith his eyes. It was a muscle problem and he ended up having surgery to shorten the muscle. He was about 2 and a half when they did it.
It was most noticeable when he was tired.His eyes would roll up and in.
It was almost at times as if he felt they got stuck. The doctors said they did not. But it did look that way sometimes.
I know it bothers you. When I thought my daughter was doing the same I got a little upset.
I took her to the pediatrician and then on to a specialists.
They said it was her age and her eyes would mature--they did.

If you continue to see the same problem after she is well and rested go back to your ped and ask for another referral.
I am sorry you are having this problem. I pray God brings answers soon.

Pam said...

By the way - I just noticed your weight loss ticker! Way to go on the 6 pounds! Take the bubble bath! You have earned it and you deserve it--maybe it will help with the worrying!

Also, I gave you an award (that Regina already gave to you!) but I wanted you to know.

Andrea said...

I agree with what the others are saying - FOLLOW YOUR MOMMY INSTINCTS - because honestly...NO doctor knows your baby as well as you do and if you think something is wrong or are worried you should definitely have her checked out. I know that I sure would never be satisfied with the answer that "it may be this, or that, and it's probably nothing serious" because what IF it is? I haven't had any kind of experience with this kind of thing, but if it's worrying you(which it obviously is - and trust me, I would be worried SICK too if my son was doing these kinds of things) I would definitely say you should get some more opinions from other doctors!! I'll be thinking and praying for you all!!!

Andrea said...

So sorry you've been carrying this heavy burden by yourself. Now that you've shared it, know that you have A LOT of people praying for you.

I agree with everybody else...follow your instincts and get more opinions until you KNOW for sure what it is. And don't ever feel silly if it ends up really being nothing. Better safe than sorry.

I have no experience with this type of thing, but please keep us posted. I hope you are able to be at peace and enjoy the Christmas season.

xoxo

zamejias said...

There was a time that Matt used to roll his eyes before going to sleep and I just freaked out everytime. BUT it's just before going to sleep that he'd do that - which I didn't know then was normal. The time I noticed it I was crying because I had thought something was wrong and it didn't help that at the very first time I noticed I was leaving for a business trip. I was crying every night in my hotel room thinking of Matt and I kept on asking my husband to pray for Matt. I was so very concerned but I just was so relieved to learn that it's all normal. It seems that he's outgrown that now.

Now about PTU, I'm sorry but I have never heard of it before. But thanks for this info that I learned today. Anyways, I guess your concern deserves a second opinion (from another eye doctor) - especially if the doctor's explanation didn't convinced you. Matt's pedia would always tell me to listen to my instinct - but of course I'm praying that it's just a normal thing and all's well with Hailey and that hope she'd would outgrow it soon.

KC said...

Mel.. I'm going to email you with my comment to this.. I hit the comment part and started writing and then it got to long..
But on short.. GET your doctor to send you to a pediatric neurologist and don't take NO for an answer. We went though something a little like this with Princess when she was 2 1/2 years old.. Going to email you now.

Shauna said...

Okay, I know you have no clue who I am, but I just found your blog when I was searching for Paroxysmal Tonic Upgaze. My 6 month old daughter Lucy just started doing this exact thing, and it freaks me out. Like your daughter, it only lasts a second or so, and it doesn't seem to bother her. (me on the other hand, I'm worried sick). I found this message board where a lot of people are talking about it. Hope that link works. Anyway, it seems like there are sure a lot of kids experiencing this for a syndrome that is supposedly so rare. Seeing that so many children experience this makes me feel a little better, but still...why doesn't anyone know what's causing it?

Since Lucy just started doing it yesterday, I'm going to watch for a couple of days to see what happens. And I think I'll try to get it on video before I take her to the ped.

Good luck with Hailey. It's so scary, isn't it? Feel free to email me. I'd love to hear if you find anything out.

eph2810 said...

I am so sorry to read about Hailey's condition. I hope that all will be okay after the doctor reviewed the video.

(((hugs)))

Anonymous said...

Hey Melanie, I was wandering about the outcome of your child's eye movements. I'm the mom who's son has both PTU and Seizures. Check out Upgaze.org for an update on Danny and maybe more info if you are still looking for answers. Hope all is well, from a concerned mom. Maybe we'll chat on the PTU Village.

lisa said...

hi my daughter had just been diagnosed with ptu,if u can help in anyway please contact me on mrsppewee1960@aol.com,mt name is lisa xxxxxx

Elisabeth said...

Hi.
I´m just searching the Internet for information about PTU. We just got our 16 months old son diagnosed. We have been to a Neurologist here in Stockholm, Sweden, and shown videos. I know you wrote this a long time ago but Google pickt it up... I wonder how you are doing now? I got tears in my eyes when I read your story and I can really relate. I am worried sick...
Best regards