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March 21st, 2004, 09:41 AM
Hey everyone,
Heres something that I've wanted to post for about a week or so but hoped it would go away, like a phase or something. As most of you know Seth is 5 and has Hunters. The past week or so (almost since the "poopy" nurse situation) he has been different. I cant explain exactly how but he is less.....um.....happy and more clingy. He recently took a trip to the museum with his preschool class and my husband (his dad) went with them. Seth had a VERY hard time with the stairs, more than normal, and ended up sitting most of the time and looking at an exhibit that had several different animals (atleast there was alot to look at while he sat). I have noticed lately that hes had more trouble with stairs and with his knees and feet turning in. The last time we saw the Geneticist (1 month ago) he said that he was pleased with Seths progress and it seemed if the MPS is going slowly (more than mild but slower than severe) I was SOOOO happy to hear him say that. Now it seems as if his ROM in his legs have gotten alot worse in a month. I thought that we could judge how fast things were gonna happen by watching the progression over a year of time. Is it possible that he was doing "good" before and in a months time his legs are worse?. He does take motrin everyday to reduce any pain he may be having. I will be calling the doctor back on Monday but wanted to see what you guys thought also. I guess I dont totally understand how the whole progression part works.....can it progress slow then certin parts prorgess faster? Its not just the legs thats different its his whole.....um....aura (understand?) I guess it seems like hes thinking about stuff all the time. Do you think maybe he has heard something or came to the realization that he is "different"? Developmentaly he is about a year and a half behind, although sometimes he makes observations that NO 3 year old could make. its weird how his brain works. HE CANT LOSE HIS LEG USE BEFORE HE IS ALOUD TO START ERT. I know that his body will do whatever it wants and I cant stop it but I thought if I "typed" that big enough then his body will listen to me :? ......I know wishful thinking.
Have any of your kids went through some kind of mental "phase" like this before? Seth has not asked questions at all, he knows he has "hunters inside him" and that we go to the doctor to check his Hunters but no other questions. I ask him whats wrong he just gives me a smile and a hug and runs off. Maybe he is developed enough to have questions in his head but not enough to to express them verbaly. His speech is that of a 3 1/2 yr old, so he may not know the words to use.

Misty

Jessica
March 21st, 2004, 10:17 AM
Misty,
For starters, did you get the email I sent you? I replied back to your questions but didn’t hear a response. :cry:

As far as Seth...I won't say what you want to hear, only because I have no answers. :( I know that you are on pins and needles with him. When Kaity was first diagnosed I used to walk behind her with a pillow. (not really but…I followed her very closely!! :D ) I was always there protecting her. I was so afraid if she fell she would hurt her back.

The doctors had told us her back was in a “fragile” state. Of course at the time that was all I could think about! She was constantly falling when she was little. I just knew she was going to fall and be paralyzed! Of course she didn’t. She continued to fall but she always got back up. :)

My point is, things that I worried about right after diagnosis I see you are worrying about also. There is nothing I can say that will make you feel any better. You are going to worry about, “when will he start getting bad? How much longer will he walk?” All of these emotions and head games are running through your mind. It eats a person up! I know because I’ve been there done that!

Only time will ease your worries. I know that doesn’t give you the answers you are looking for right now and I wish I could help you, but only time and healing can do that.

I do have one comment about Seth! I have noticed over the years that Kaity would seem more achy and tired during the winter months. My husband also has arthritis and he hates winter! But never fear my dear, warm weather is right around the corner!

It will be okay Misty. I know that is hard for you to see right now, but it will be. :group

March 21st, 2004, 10:28 AM
Thanks Jess.......I did get the email you sent and I replied this morning. I hope we can find a way to go to the conference so I can put a face to the wonderful Jessica..... :bow: "Im not worthy, Im not worthy"
Misty

Barbara Pryor
March 21st, 2004, 10:42 AM
Misty,
In Hunter's the joints are more involved. There for a while Andrew wouldn't move or walk as much. Now you can't get him to sit still. Seth may be realizing that he is having trouble doing things and he might be a little depressed. I know that I would be. I have arthritis in my hips, knees and ankles and I know this last couple of weeks I have really been feeling it. The weather does really have a big part in how you feel with acky joints. Stairs are the worst for me when my knees are hurting. Sometimes a very warm bath will help ease the pain. It really isn't a pain either it is more like a tooth ache, it isn't enough to go to the dentist but it is enough to keep reminding you that it is there.
I hope that Seth starts to feel better soon. I know that I have been miserable.

Laura Brodie
March 21st, 2004, 12:15 PM
Misty,
Will has been exactly the same as Seth in the past- in fits and starts- he goes through good times and bad times-He cannot talk so cannot let me know whats wrong -very frustrating -then he suddenly gets better and seems to improve enormously! :) Obviously like you I get very worried then suddenly he's back to'normal'.
I keep waiting for him to deteriorate so examine everything minutely :whatthe?: then try and second guess which is not a good thing to do!!
Jessica is right in all that she says!!! :lol: I think as we get used to this diagnosis we may realise the'drawn-outness ' of the decline! :cry: Lets us both wish hard that the ERT happens before Seth And Will decline beyond real help :( Whatever happens 'Thank God FOR THIS PLACE!!!' lOVE Laura

Jessica
March 21st, 2004, 12:28 PM
I agree Barbara...my husband says the same thing! I've often thought of moving the whole family to Arizona! Anything to help his and Kaity's pain would make me feel better.



I hope we can find a way to go to the conference so I can put a face to the wonderful Jessica..... "Im not worthy, Im not worthy"
:D Oh Please...LOL I'm very mean, cranky, rude, I have to many wrinkles, too much gray hair, too much stress, I like to play with guns for Christ's sake ...and chase bad guys...that must tell you something just ain't right!! :D

Seriously Misty, you will find much needed help here from a few of us who have been through the exact same things. MPS is like that. Our children are all so much alike it is uncanny. Hopefully you will get a few more replies from Hunter parents, but Kaity was also very stiff and slow moving...and stairs she normally took sitting down by going one step at a time. But unlike Hunter's she was always slow moving from the time she started walking. :frown:

zachiesmom
March 21st, 2004, 04:52 PM
Hi Misty
First things first , :group & :kiss:
Zachie has been having the same issues with stairs lately as well, He doesn't have Hunter's but I think the joint issues are a lot alike as Jess said. I too have been inquiring around about it possibly being weather related. We have had an extremely cold winter here this year and it has not let up yet and he does seem to take twice as long on the stairs as he did earlier last fall. I think the one amazing thing about him, and I bet you'll find this too , is that they can truly tell their limits. Even though they are too small to tell us when things are bothering them, they seem to do what's right for them. Maybe Seth is having a little more stiffness now and he's just choosing to relax a little more often, something I'm sure we wish we could all do :frown:
I can't give you any real answers either but just know that we all understand how difficult is for you constantly wondering when the next phase will come and hope that we can at least be here for you to voice your fears. Hopefully, this is just a phase....sometimes it's hard to believe that they may actually be acting like a " normal" child :whatthe?: , maybe he is going through a "thoughtful" spurt and he's just concentrating on that. :)
whatever it is, it will happen and you will get through it because you are strong and you have the support you need,... US!!!!! :D More :kiss: Hang in there and just know that SETH knows you love him no matter what!!!!! :)

ChrisMPS2
March 25th, 2004, 04:59 AM
Hi Misty,

I hope things are going a little better for you now. You post gave me a horrible flashback of when William fell down the stairs from the very top. He usually would sit down and slide from one step to the next but that morning he had been sick and taken Dimetapp the night before and he just stepped into thin air and tumbled all the way down. It was one of the worst moments of our lives! He dented the wall and himself but by some miracle managed not to even have to go to the hospital.

We have a stair glide now and it has saved our backs and gave us peace of mind about going up and down the stairs.

As far a how functions are lost:

William used to have intense pretend play which slowly faded away to the point where he would just carry his toys around and chew on them instead of playing a game of baseball or cars. Sudden losses of function usually were caused by something curable like an ear infection, plantar warts, scared of shadows.

Since he started having seizures at age 10, we see huge losses in ability after a seizure episode but that may just be William's problem. Most kids have seizures and recover right away.

But he does sometimes recover some abilities. I woke up this morning to find William pushing up and leaning on his side and looking out the window. I know it doesn't sound like much but he hasn't been able to change his position except by wiggling a few inches for several weeks so as you can imagine, I thought I was dreaming when I woke up and saw him raise up and look out the window.

Every day with our kids is a precious gift.

Chris

Sharon Cochenour
March 25th, 2004, 05:23 PM
Misty, Andrew has Hunters and seems to slow down over the winter monthes. I broke down and got his wheelchair in January because he seemed not to want to walk, now he is back to running everywhere.
My Immunologist told me that Hunter children seem to also have arthritis. Because of this he told me to give him motrin every day. When it is cold and rainy try to give him an extra dose. He also loves a warm bath, and that also seems to help.
I have also noticed that he seems to concentrate really hard. I don't think it is seizures because I can call his name and he will look at me. I really think he is thinking or concentrating on something. He is non-verbal so it is hard to tell what. Maybe he is thinking of ERT? :? He certainly hears me talking about it alot.
Hopefully all children will do better now that spring is here. :)
Sharon