View Full Version : Loss of vision

April 2nd, 2004, 01:23 AM
well.......Seth woke up this morning with no sight in either eye. After a long day of doctors and tests, we still donít know why it happened. The Ophthalmologist said that both of his optic nerves are enlarged and that is why he can't see. Seth is on an IV and getting doses of steroids to try to reduce the swelling on his optic nerves; we were told that if the swelling goes down then Seth has a chance of recovering his sight. Seth will be admitted in the childrens hospital for 3-4 days and then sent home (even without sight) and put on an oral steroid, it may take a week or so to get any sight back, if hes gonna get it back at all, even if the swelling gets better. The doctor also said that he has not seen this happen very much but the cases he did see the patients usually ended up having/getting Multiple sclerosis, he does NOT think Seth has or will have MS, none of the doctors can tell us why but they did tell us that he will have a greater chance of it happening again when he gets a viral infection or the MPS starts showing more. The doctor did mention that maybe it was cause by something viral, or MPS, or both, or neither. We did a CT scan today and it showed no Hydrocephalus (which is what we all thought had happened) and we are getting an MRI tomorrow to see if that will tell us more. :(

April 2nd, 2004, 01:52 AM
What a scary thing to wake up to. I hope the swelling goes down quicker than they predicted. Prayers and best wishes to you.


The Rea Family
April 2nd, 2004, 08:26 AM
That is awful :cry: .
I hope that Seth regains his sight soon.
Please keep us posted.

April 2nd, 2004, 08:33 AM
I was about to email you and ask if everything was okay because I hadn't seen you on the forum!
Poor little Seth! :cry:
I've never heard of this happening in a Hunter child :? has anyone else?

I'm so sorry Misty. Once again I know exactly what you are going through. I hope he gets better REALLY soon! As in TOMORROW since it is his Kaity Bug's BIRTHDAY :cry:

Seth...I'm going to pray really hard you get better in the next few days!

Hang in there Misty,

Priscilla Raftery
April 2nd, 2004, 09:54 AM
Oh my goodness, this is so awful...poor Seth :cry: . I also will pray and pray that this is only temporary. Our poor children, my heart hurts right now...Priscilla :(

Sharon Cochenour
April 2nd, 2004, 01:52 PM
Misty. How scary for you and Seth. Hope the steroids start working to decrease the swelling. I have never heard of that before with a Hunters child. Andrew does have mild clouding of the corneas, which they told me wouldn't happen to a Hunter child. We will keep you guys in our thoughts and prayers. Hope the MRI gives you some answers.

Laura Brodie
April 2nd, 2004, 02:07 PM
How dreadful for you all and especially Seth - I was so shocked I didn't know Hunters Boys got eye probs to?
Will does have some probs but s they can't really test they don't no what is wrong but he sees fairly well.
I do so hope Seth does recover soon! Thinking of you Love AND hUGS Laura

Paulina Jump
April 2nd, 2004, 09:01 PM
Misty, how scared you must be. :group We are praying for you and your family. Give Seth a big hug.


April 2nd, 2004, 09:06 PM
Oh Misty!!!!! :group

I'm praying for Seth!!!!!!!!!!!!!!!!! :cry:

Love and HUGS!!!

Barbara Pryor
April 2nd, 2004, 11:01 PM
Sorry to hear about Seth. Like my sister, Sharon, said--hopefully the steroids will kick in and start to work. :( Tell Seth to hang in there. :)

April 2nd, 2004, 11:52 PM
Misty, I'm sorry to hear that this has happened to Seth. (((HUGS)))

April 3rd, 2004, 12:24 AM
Thanks everyone for your thoughts and prayers. Seths MRI came back showing that his optic nerves are enlarged just as we thought. Dr Dasouki (our geneticist) has been playing phone tag with Dr. Munzer (i think thats spelled right) about Seths situation, Dr. Dasouki said he and Dr. Munzer went through some schooling together and he knows him very well. I am hoping that Dr. Munzer can help us figure out what happened. Seth still cannot see at all but is doing well adapting to this change. Hes been, for the most part, feeding himself by feeling around on his plate. The doctors have mentioned a lumbar puncture so we will talk about that tomorrow...THANKS KIM FOR SUGGESTING IT!!!!!. This is not something that is common in Hunters, we were told that sometimes hunters kids get swelling behind the eyes but it has never caused blindness, even if its temporary blindness. Thanks again for all your support, I need to try to go get some sleep because it is a 50 min drive up to the hospital early in the morning and I need my "beauty sleep" :)
Thanks again for all your support, you are all such wonderful MPS family members.

Cynthia Anhalt
April 3rd, 2004, 12:49 AM
Misty, I am so sorry for you to be going through this. I will keep Seth in my prayers. Stay strong.
Cynthia :group

Priscilla Raftery
April 3rd, 2004, 09:09 AM
Still praying for Seth :angel: ~ please give him a big birthday hug from Joey & me Priscilla

April 3rd, 2004, 01:36 PM
Big hugs for Misty, Seth and family. How very scary!
Seth, you and Kaity bug are extra special to me, sharing my birthday.

Praying for you and your whole family. :kiss:

Anne Cairns
April 3rd, 2004, 01:41 PM
Misty I am so sorry to hear about Seth
You are both in our prayers
Anne and Sebastien

April 4th, 2004, 01:46 AM
Ok, here i am again at 11:30pm sitting in front of the computer reading the posts that you all have posted for Seth, I am truly grateful to have such a family :). Seth is doing the same as yesterday but now he is trying to do things on his own. He even played with toys today sitting on his hospital bed...by himself!!!!. I wish I could say that the nurses sang him happy birthday BUT they didn't. His preschool teachers came to visit and they DID sing happy birthday to him, and of coarse my husband and I sang too him also.
We had a long talk with the geneticist this morning and he still has not gotten in touch with Dr. Munzer and he asked if I would ask my wonderful MPS family if they have any thoughts on Seths issue (weird huh?) anyway, I wanted to post our hospital number and if anyone has any thoughts please don't hesitate to call. all of our doctors are dumbfounded with Seths situation. Seth is supposed to get a Lumbar Puncture on Monday and I will not be able to check any replies tommorow night so PLEASE if you have experienced this or know someone who has or can give any kind of info call us at the hospital...........816-234-3000 and ask for Seth Van Nostrands room and they will ring you up to us. I spoke to the nuerologist today also and he said "its just a case of Optic neuritis what do you need me for" I am so mad right now at the dr I could :order: on his big, fat "holyer than thou" head.
I would be so lost without you guys :)

Sharon Cochenour
April 4th, 2004, 10:44 AM
I'm glad to hear that you and Seth are still hanging in there. Did the big fat headed neurologist have any thoughts about the neuritis being only temporary? Some doctors really need to have a ajustment. :order:
I will be thinking of you and Seth today, and tomarrow. Please keep us updated. As always we are thinking and praying for you guys.

April 4th, 2004, 08:43 PM
I've done nothing but think about you Misty! I'm sorry the doctors are giving you the run around. I hope someone can call with answers. Hopefully the vision loss is only temporary and things return to "normal" for you guys soon.

Just so you know you have been in my prayers every single night! Hurry home...

April 4th, 2004, 10:18 PM
Oh :cry: I am so sorry for all that you are going through! Poor Seth! Misty~ I hope someone has the information you need! It has to be so frustrating no to know why this is happening. I am praying!


Priscilla Raftery
April 4th, 2004, 10:54 PM
Our whole congregation said prayers for Seth today...I asked for prayers that his vision returns. I should have also asked for prayers that compassion be a must course in med school! Priscilla

April 5th, 2004, 09:39 PM
SETHS HOME!!!!!!!!!....thats the good news.
He is seeing shadows with no color in the right eye but still nothing out of the left eye. Dr.Dasouki talked to Dr.Munzer and Munzer was not able to help us figure out what happened. The nerosurgen was VERY upset that we even suggested that he consult with Dr Goodrich so he refused to call Goodrich or even email him at all, BUT I will be calling Dr. Goodrich in the morning :) I dont give up that easy. Seth was sent home on steroids and will be seen again in 10 days unless he gets worse before then. We were supposed to have a LP today and have a Lumbar drain placed at 1pm but when they came in to do an exam before the LP Seths pupils constricted alittle faster than they they had been and he was "feeling" his way around the room. They cancelled the LP because of the pupils constricting (even though it was only alittle better than before), the CT scan showed no swelling of the ventricles, and the fact that Seth is able to "see" shadows out of one eye thay told us that all of those changes meant that it could NOT be hydrocephalus or any other kind of pressure issues that caused it to happen and that it is most likely something viral. I will keep you all posted on how he is doing.
Misty :kiss:

Cynthia Anhalt
April 5th, 2004, 11:34 PM
Hi Misty, I have been thinking of you all so much, and worrying about Seth. It sounds like he may be taking baby steps in the right direction. I know he must be happy to be home again. Please keep us posted. You are in my thoughts and prayers.
Cynthia :group

April 6th, 2004, 12:16 AM
:bounce: You're home!! :bounce:

Laura Brodie
April 6th, 2004, 03:03 AM
So Glad Seth is home and slightly improved. Thinking od you love Laura

The Rea Family
April 6th, 2004, 07:37 AM
I'm so glad that Seth is home and possibly improving.
Keep us posted.

April 6th, 2004, 09:21 AM
Misty, I'm so glad to hear that Seth is home. I've been thinking about you all so much these past few days. It's good to hear he is making some improvements.

Sheila George
April 6th, 2004, 09:27 AM
Misty, It is wonderful to hear that Seth is home and showing signs of improvement. Sending my best wishes for continued improvement.

Priscilla Raftery
April 6th, 2004, 10:49 AM
Misty, I am so glad Seth is home! :D I believe the healing process will be far more successful in warm, familiar, loving surroundings. I pray the imporvements continue ~ Priscilla

April 6th, 2004, 02:33 PM

I''m so glad you were able to bring Seth home! :angel: I'm sure he'll be happier with familiar surroundings! Sorry I missed you at the hospital.. feel free to call if you like. 410-485-1623 :hum:

Patty and Jesse

April 6th, 2004, 03:47 PM
I am sooo sorry to hear about what you all have been going through over the past few days!!!! You must be going crazy with worry!!!! I am glad to hear that Seth got to come home, hopefully that alone will get him headed in the right direction. I wish I had a clue of what might be going on but I have not even an idea, what I do know is that Seth has a very strong mommy and she will get you both through this and maybe straighten out a few doctors in the meantime!!! We will be thinking and praying for Seth and the rest of the family as well, try to hang in there and hopefully Seth will get back to his old self soon!! Lots of Hugs and kisses for the B'day boy.

Love, Brenda & Zach

Anne Cairns
April 6th, 2004, 07:07 PM
I am glad to hear Seth is home ,it is i am sure the right track for recovery .Shadows are a good start .
Good luck to you
I pray for Seth that is vision improve soon.

April 7th, 2004, 12:23 AM
Great News! :dance
Praying all continues on the right track.

April 7th, 2004, 01:35 AM
So good to hear Seth is home and showing some signs of improvement! We will continue to keep you in our thoughts and prayers.
Anita and family

April 7th, 2004, 09:17 AM
What a dreadful and scary thing. But have you noticed how strong our little fellas are. Just keep praying and i know everything will be all right. It should just be a temporary setback
lots of love.. You are in our prayers...
ameet surana

Sharon Cochenour
April 8th, 2004, 01:17 AM
Glad to hear Seth is home in familiar surroundings. Hope he continues to have improvements. Keeping up guys in our thoughts and prayers.