Pain Help! What do you do???

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

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Pain Help! What do you do???

Postby JenandLuli » Fri Sep 24, 2010 12:21 am

Hi All!
I'm back after being gone for quite awhile. My daughter is having pain again... and I am so worried for her!
Luli is 4 years old and has SM, 2 syrinx. She had surgery last November on her lower one, opening and draining it with immediate results (regained bladder control, no more tingling or pain, etc.)
She started to complain around July about tingling - she said it felt like stars were tickling her feet! :shock: If that isn't the most perfect way for a 4 year old to describe nerve pain!!! She was also complaining of burning in her neck where her upper syrinx is and her arms were achy and hurting - she decribes it that her veins are are tangled up.

Well, it has been progressing more rapidly now so that she cannot wear shoes or socks because they hurt - we have resorted to only wearing crocs! She won't wear anything that holds to her skin - no waistbands, sleeve with elastic, even sleeves hurt. She now only wears tank top style loose dresses... but also is starting to complain about her undies hurting! :cry:
She is on advil daily which helps with her edgyness... but she still won't wear socks/shoes. Before surgery drs prescribed neurontin... but I never gave it to her, I was too afraid of the side effects.

Her NS has ordered another MRI - but with our HMO doesn't have an opening until Nov! We are on the wait list...

Anyway - all this background to say... is anyone else dealing with this type of pain??? What do you dress your child in? How do you help your child cope with the pain?
Do you think this is not related to her SM?
HELP!!!!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Pain Help! What do you do???

Postby youngwife » Fri Sep 24, 2010 12:43 am

Rachael said she has that type of pain as well. She said the type of clothes really does matter. She is sixteen, so I am sure it's much more challenging with a four year old. (It broke Rachael's heart to here of Luli!)

Mine and Rachael's thoughts are:

*Try the Neurontin. Rachael has been on it, and it did help her some. For us, it helped Rachael to not need as much narcotic medication. Her main side effect was weight gain.

*Most of the time, ice or cool rag help Rachael to some degree. However she wanted to caution you that sometimes, there is a certain type of pain that heat helps more. So, she said to pay close attention when using one or the other to how Luli responds.

*Rachael suggested trying massage...sometimes it's great, and sometimes it's horrid.

*Could Chiari Zero be the cause of her SM? Has a Chiari Zero specialist looked at her films??

It grieved Rachael to hear of little Luli growing up not knowing what a pain free day was like. She dictated to me via her bed.... and in pain. :cry: This is so very hard, and I am also so very sorry Luli is in pain and you are having to scramble to find her relief.

((((HUGS))))


Blessings to you,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Pain Help! What do you do???

Postby JenandLuli » Fri Sep 24, 2010 8:36 pm

Thank you so much Rebecca and Rachel!!!

I got a call that they moved her MRI up to this monday!!! WOOHOO! Maybe we will get answers sooner now!

I am also going to ask the NS about getting neurontin again and try it... if it will help her get her shoes on, I will be sooo happy!

I do massage her feet regularly... she asks me to daily! I'll try and do it more all over and see if it helps!

Thanks again!!!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Pain Help! What do you do???

Postby JenandLuli » Fri Sep 24, 2010 8:39 pm

Oh - and I asked about Chiari Zero way back when we were 1st consulting with her NS at Childrens... he's not a subscriber to that school of thought. And at this time we financially need to work within our insurance co. and so are limited in who we can see... maybe one day we can venture out of our HMO and pay out of pocket. I once calle UCLA to see about getting a consult with Brazeldorf (sp?) and was told it was $800 for a 30 min consult! YIKES! :shock:
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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JenandLuli
 
Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: Pain Help! What do you do???

Postby youngwife » Thu Sep 30, 2010 11:41 am

JenandLuli wrote:Oh - and I asked about Chiari Zero way back when we were 1st consulting with her NS at Childrens... he's not a subscriber to that school of thought. And at this time we financially need to work within our insurance co. and so are limited in who we can see... maybe one day we can venture out of our HMO and pay out of pocket. I once calle UCLA to see about getting a consult with Brazeldorf (sp?) and was told it was $800 for a 30 min consult! YIKES! :shock:



Yes, I understand completely! Rachael is needing to see a Chiari/SM and cranial-cervical join instability expert (like as in TCI), but our insurance will not allow it. It may now be another year before we can get her there...which breaks my heart!!

((((HUGS))))

I will keep you all in my prayers! I can't wait to hear what the NS says! Please let us know.

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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