Hi, new here.

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Hi, new here.

Postby amanda » Fri Mar 12, 2010 10:50 am

Hi all,
I'm new here and I have a son who is 6 with Chiari type 1. He was diagnosed when he was 1 year old. I'm just drawing a blank right now. Since he was born we have been dealing with one thing or the other. He is delayed, always has been. He has anger issues, panics easily, he has trouble swallowing liquids and lately he's started getting stomach aches sometimes after he eats. He's even vomited a few times. He is scheduled for an mri on wednesday and I feel bad for him. I'm wishing he didn't have to do it and could just be a healthy normal child. He get's so overwhelmed with everything. So do I really.
He is farsighted as well. He has alot of problems with going to the potty. He is pretty well trained with going pee in the potty but he will not go poop. No matter what....
He's been like this for a couple years now. He had encoporesis (sp) but is not constipated anymore. He is scheduled for an x-ray to check and see how that is going. He says he can feel he has to go but he just lets it go. I do not understand why he does this. It's very frustrating. He also wets the bed so he wears a goodnight to bed. I dunno if this being caused by a syrinx or what.. but I doubt it because he says he can feel when he has to go and will sometimes try to hold it in.

He gets so angry sometimes and hits and growls at ppl..kicks ppl.. I have to go to the school and get him out of the office all the time. He throws things aswell... like his shoes or his glasses. He pulls things off of the walls in the classroom. One time he was in the office and the secretary asked him multiple times if he had pee and he said no. Even tho he did so he peed his pants.
He is smart and doing well with his work when he does it. I dunno.. I just wonder if maybe decompression would help him. We will have to wait and see what the MRI says I guess. We are supposed to go see Dr. Micheal Edwards at Stanford after the MRI. I would be very grateful for any advice or opinions. I really am at a loss. I don't want him to have surgery but if it will help him then maybe we should...

I forgot to add that he complains of reflux alot to. He says he can feel it coming up into to his neck.

amanda
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Re: Hi, new here.

Postby lcolangelo » Fri Mar 12, 2010 1:02 pm

Hi Amanda,
My daughter also suffered from reflux-- swallowing disfunctions can def. be caused by a chiari-- his pottying issues may be as well. I know it's a difficult decision-- it's your baby-- but often the surgery helps-- it can change his life-- I'll pray for your decision! Let us knwo how it goes.
Lisa
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Re: Hi, new here.

Postby Catherine » Sat Mar 13, 2010 12:06 pm

Well, my 4 year old has all the same symptoms as your son (and a Chiari 1). She was decompressed on Feb. 23 and so far all symptoms have been worse pluse horrible headaches, but yesterday we had a good day and she didn't have any headaches or anger issues until bed time. I think her headaches come on because she lays down and she is not angled up enough. She had a terrible tantrum in the middle of the night, but now is up playing again like yesterday. I'm hopeful that as the weeks go on she will continue to improve and maybe all of the symptoms will go away. Maybe Zofran can be prescribed for the vomiting, Miralax for the bowel movements. Catherine had both of those for a year before we ever saw a NS and does well with both. Good luck on your decision.

Crystal
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Re: Hi, new here.

Postby shannon » Tue Mar 16, 2010 1:02 pm

Hang in there Amanda. Good luck with the MRI this week. Hopefully it will give some of the answers you need and they can start working on helping relieve his symptoms. Keep us posted on how everything goes.

(Ms) Shannon :)
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Re: Hi, new here.

Postby amanda » Thu Mar 18, 2010 7:33 pm

I hope so... He's been complaining of his neck hurting and feeling like he's going to throw up. He also is so easily scared. He is just scared of everything. I don't know if that has anything to do with chiari or not but we are talking about getting him some therapy. I just don't know if I should wait until after we see the neurosurgeon. His MRI got rescheduled till next wednesday again as they decided the afternoon before the MRI that he needed a physical first. Geeze, would have been nice to know a week ago when we could have had it done. :roll:

I have gallstones now to so it's a bit stressful around here. I'm also getting flack from the school district because misses a lot of school partial days for doctors appts. I don't know what they want me to do about that. I'm getting together info for them so they can confirm they were doc appts. His teacher is looking into for me as well. She's so understanding.

We got a CD of Chris's previous MRIs so the raidiologist can compare the scans. I'm very curious to see what he says.

amanda
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Re: Hi, new here.

Postby memom » Fri Mar 19, 2010 11:17 am

HI Amanda,

I want you to know you are not alone. My daughter shares many of the same symptoms as your son. She was very anger too! When she felt good, she did well at school but when she did not, she was a bear! She missed alot of school, we finally put her on the hospital/homebound program and it helped ALOT! She no longer has to worry about having pain in school and people not understanding what she is going through. Her primary doc filled out the form - she has a diagnoses of Arnold Chiari 1 and that was enough to qualify for the program. A teacher from the public school district comes to our house 5 hours a week. My daughter loves it and is able to keep up this way. It releaved ALOT of stress for whole family!

My daughter "lashes out" when she has pain and she gets scared too. We have been seeing a therapist. She has helped her learn to cope with her condition and pain. We have exercises we do when she is in pain, they help. My daughter is much happier and she knows what to do when pain comes around.

It is very important for you to take care of yourself. I know how easy it can be to put off taking care of yourself when you are so consumed with taking care of your son. But you must - for your entire family. Keep us posted and know our thoughts are with you.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Hi, new here.

Postby nature » Thu Mar 25, 2010 11:37 am

Hey,

Just wanted to jump in and add a little. My 13 yr old daughter was decompressed 2/17. She has always had anger issues also. I have often been at a loss for what to do in those times. She is back to school full time this week and isnt having many problems besides the occasional headaches (which is new after surgery) and now she is having back pain. I m wondering if this could be from the syrinx draining but I am not sure. Her NS office has not been very helpful lately. They will not give her any pain med or muscle relaxers for muscle spasms, so we are just doing tylenol and motrin. I will be praying for your decision. This is an awful thing to watch your child go thru. Mine is having a hard time learning to deal with the pain and limitations so far, but hopefully that to will get better with time! Good luck with your appt.

Nature
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Re: Hi, new here.

Postby nature » Thu Mar 25, 2010 11:40 am

I forgot to mention that my daughter has had reflux and stomach issues also. Now almost ALL strong smells make her sick. We cannot even cook certain foods in the house anymore. The docs dont seem to think all these things are realated to Chiari and SM but I think there is def a connection there!

NATURE
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