View Full Version : Seths update

June 24th, 2004, 12:13 AM
Got good news and yucky news.....Good news is always best to give first :)
First let me THANK ALL OF YOU for your thoughts and prayers because someone upstairs was listening :). I had mentioned in a previous post about seeing some good changes in Seths vision on and off during the day....well we got him tested today and he tested 20/40!!!!!!!!!!!!! seriously Im not kidding !!!!!! although we have lots of times where he is seeing the 20/800 we never thought that the changes we were seeing were this good. The Opthomologst said the vision changes (from good to bad, bad to good again) that he is experiencing all the time tells her that it is something CNS related. While we were there he showed times of major Impairment (like when he lost it in the beginning pre shunt) but through most of the exam he showed BIG improvement (the 20/40) She also said she is not comfortable saying that he has 20/40 vision because of the changes she witnessed and wants to see him in Aug to check to see if it is more consistant. I am shocked I knew that I had noticed a few times that he would comment on something that was 20 feet away but I never thought and was kinda afraid to think that he ACTUALLY saw something so far away (I was afraid to get my hopes up and then be dissappointed because of his inconsistantcy with his vision...you all understand and I hope you know I am not trying to "keep him down"). I am more excited now that I know that atleast a few times during the day he may REALLY be seeing almost perfect!!!! I am about in tears now thinking about it :).....I almost forgot there was NO papelidema!!!
With Neuro surgery today I was planning on going in there with a fighting face on and demanding a shunt tap......the eye doctor was right before this appt and I was so shocked and happy that I didn't push the shunt tap. We asked about doing one and doctor said again "I don't think he needs it blah blah blah" I guess I was to happy to fight with the doc about it. But I dont neccesarily think I made the wrong or right decision about not pushing for the tap.
We have decided to take Seth out of summer school and that way if the changes he has had are still there by the weekend then I will know it is not stress related.

Now the yucky news.....I am hoping it will be easier to write the yucky news now that I just got done and happy after writing the good news. Seth also saw Orthopedic surgery today and we got an updated bone scan on his hip and his shoulders. the shoulder results aren't back yet but the hip part is and it showed over 75% of his left hip joint in gone now, there is degeneration in the left hip socket on the top and a cyst in the top of the left femur bone. I asked is this MPS related and she said " no if it was MPS related then it would be bilateral so its not even related to the MPS" Now I am not a doctor BUT it doesn't even seem to be logical that MPS would make things happen in only a bilateral fashion....am I right? She called it "Perthes disease" and there is nothing we can do. she said we might try surgery, or an experimental drug but niether one has actually shown to be effective or not be effective. my initial reaction is Seth would have to be a VERY unlucky kid if he had another disease ontop of all the other strange things that "arent rleated to the MPS" (like all the docs are saying) that he's had the past 3 months. I, personally, dont buy any of it and I think that everything he has had happen lately IS related to MPS somehow but I may be just wanting to blame MPS for everything :frown: At first she told us to restrict all activities and basicaly put him on bedrest as much as we can but that has never been proven to help this disease either but is one of the things the doctors have been trying lately. so she ened our appt with "I dont know what to tell you to do but what you think is right for Seth, and if the Perthes disease goes with him as it goes with most it should heal itself in 2-4 yrs" yep I typed YEARS. I havent had time to do any research but you can bet as soon as I am done posting this I will start searching the net. Anyone ever heard of this disease before?


Paulina Jump
June 24th, 2004, 07:49 AM
Misty- That is great news about his eyes. I don't know anything about Perthes disease, but i found this link.



The Rea Family
June 24th, 2004, 09:09 AM
Thanks for the update.
That is great news about his eyes.
You both are still in my thoughts and prayers.

June 24th, 2004, 10:08 AM
Misty-Great news about Seth's eyes. :) He could be frustrated with the good-bad-good-bad he is experiencing, hoping during the good that the eyes are becoming fixed. It is an overwhelming. :frown:

About the "Perthes". There is a perthes-like issue with MPS. I read some about it in the info from the society and then did some research when: My younger son Brandon (before we got the Mps dx) was diagnosed with Perthes in the left hip socket and leg. NORMALLY, I was told Perthes is diagnosed in younger children with 10 being the top of the range. For some unknown reason the blood flow is interrupted through the bone-joint area and the bone starts dying and collapsing. Brandon's first Orthopedist said it would run a course until the blood started flowing again on it's own. In the meantime we would give pain relievers and wait. Brandon could not participate in contact events and should rest when he needed. When Brandon ended up taking 1200mg Ibuprophen a day, was on crutches and in a wheelchair, and I was still getting called to school because his leg collapsed, I asked Christopher's Neurosurgeon if he could refer me to an orthpedist in his hospital (U. of Iowa) for a second opinion. We saw Dr. Fredrick Dietz within two weeks. He was very open about Brandon's range being not only out of the normal age range for Perthes, but the record that he had seen. He basically gave me the 3-4 year period also, BUT he did say we could do something for the pain management. Brandon's hip socket was not yet effected, It was the ball of the femur that was flattening and widening. He said he would only use hip fusion as a last resort because it caused more problems with the back and knees due to the redistribution of weight. He told us about a hip-realignment in which the flat part of the ball would be shaved so it would no longer catch on the outside of the socket and then pin the leg into the socket close enough for the fusion to occur and the blood flow to happen naturally. We I went back to our first doctor, ONE MORE TIME,. He said the same thing as before 3-4 years, maybe a hip fusion. I asked if alignment was possible. He said NO! His son had fusion and it worked out. That was almost 20 years ago. I called Dr. Dietz and said let's do it. Brandon took a muscle relaxant for about 3 days after surgery. NO more Ibuprophen. NO PAIN, except when the weather changes but only for a short time. His left leg is about an inch shorter, but we put a lift in his shoe. His last checkup with the doctor, the blood flow was back the bone was not collapsing anymore, and the x-rays looked great.
I also found out Dr. Dietz had an interest in and had been reading on MPS! Small and lucky world! He had seen the new diagnosis on Brandon's chart for the checkup, and said it then made sense why Brandon was outside the normal age range for Perthes and that his Perthes was not acting like the "normal" Perthes.

I do not know how the hip socket involvement would work, if there are other options for it, since Brandon's was not involved in the collapse as much as the femur ball. But I would check a second consultation, because like you I don't see MPS as effecting only in a certain way everytime.

F.R. Dietz, M.D.
Dept. of Orthopaedics
University of Iowa Hospital and Clinics
200 Hawkins Drive
Iowa City, Iowa 52242-1088

319-353-6754 FAX

June 24th, 2004, 10:19 AM
THANK YOU THANK YOU DARLA I am calling right now!!!!!!

June 24th, 2004, 10:37 AM
:cry: :cry: :cry: :cry: :cry: Misty, I have only read the first two lines of your post so far, but I am jsut jumping up and down and bawling!!!! I am so happy about Seth's vision!!!!!! I am .... I just don't know what to say!!!! It's awesome. God is Awesome!!!
okay now I will read on and comment on the rest in another post.

June 24th, 2004, 10:47 AM
Dr. Dietz is awesome he got on the phone with me right away he requested the x ray pics...which I happen to have a copy of right in frount of me :) and he and the radiology docs will check them out and tell me what they think.....thank thatnk you your are an angel. This my friends/fanily is what this forum is all about :)

If there is a new member who hasnt decided to post yet on the forum. this is the support I was talking about in the post I made in the general subject section under new members!!!!!!!

June 24th, 2004, 11:37 AM
I'm like you Kim!!! I can't get past the vision report long enough to worry about anything else!!!!!!!!!

:bounce: Thank you, thank you, thank you for restoring Seth's vision!!! :bounce:

June 24th, 2004, 12:39 PM
Misty, that is wonderful news!! :) I'm so glad that you were able to connect with another doctor to discuss the perthes.

Laura Brodie
June 24th, 2004, 12:50 PM
Misty - :Party: Great news :music: I 'm also glad you found that Doc through Darla-your right thats what this forum is all about! Love Laura xxxx

robert t
June 24th, 2004, 01:26 PM

It's wonderful to hear of Seth's vision improvement :Party: . Like our kids don't have enough going against them!

I love the doctor's suggestion about bed rest :lol: . I mean seriously, has the Dr. ever noticed what young Hunter's kids are like ? :bounce: I think bedrest for Zach would require straps and heavy drugs. (straps for him, drugs for me so that the screaming wouldn't get on my nerves. :sleepy )


June 24th, 2004, 01:47 PM
I am so glad you were able to connect with Dr. Dietz! From our experience, he will be very open and honest in what he knows, thinks, and isn't sure of. He is also very good with his patients (and their parents) showing what he sees on the x-rays instead of just telling you what they say, at least with the first set.

I hope he is able to help Seth.

I'm still :bounce: over the eyesight news!

June 24th, 2004, 03:24 PM
:cry: Misty,
I am soooooooo happy to hear about Seth's vision!!!!!!! I hope he can just use those blocks to build with!!!!!!!!!!!!!!!!!!!!!!!!
I am so so soooooo happy that He IS gaining it back!!!
I am very happy to hear of Darla's experience concerning this possible perthes disease and truly hope that her Dr. can shed some expert advice on things!!!!!!!!!!!!!!!!! :cry: :cry: :cry:

OK, I CAN'T STOP CRYING!!!!!!! I am so happy that something is going right for Seth!!!!
(((((((BIG FAT HUGS)))))))))))))))!!!!!!!!!

I will of course continue to pray for Seth and you and hope that before this new find really turns out to be bad news that it just turns out to be a mini- hurdle!

All my LOve to you, :group

June 24th, 2004, 03:38 PM
I'm so happy for Seth's vision!
Hope he is doing just fine right now.

Klem (Hug) Vibeke. c",)

June 24th, 2004, 03:56 PM
Because Seths vision isn't consistant (as I type he is having trouble seeing the TV and is 2 inches away from it) we will still teache braille and now will start back on the sign language (just incase he ends up deaf since his hearing loss was upgraded to mod-severe on one side severe on other side, but still sighted -even if its alittle). SO dont worry those blocks will get good use and help teach him braille. He might, occasionally, stack them and chop them down with his play sword :lol:

June 24th, 2004, 05:38 PM
Oh Misty, that is such good news about Seth's vision! WOW! I'm glad Darla could hook you up with another doctor. I have heard of several Sanfilippo children with hip socket involvement, yet all the docs say its not MPS related. I think its something they need to investigate more. Darla, I hope I'm not being too forward, but this info would be great to put in Courage for the families that don't have web access. Just a thought.

June 24th, 2004, 06:19 PM
I am sorry to hear about Seth's orthopedic issues. However, I am delighted to hear that he is seeing better some of the time. You have gone through so much lately I hate to see more things go wrong for Seth. I will be praying for you. XOXO