Hi, I'm new and so lost...

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

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Hi, I'm new and so lost...

Postby hoosiermommy » Sun Jul 12, 2009 12:35 am

I am so new I still have shrink wrap.

My story is not long, my youngest son whom will turn 4 in Sept. has shown all the red flags for Autism. His special ed preschool teacher recommended us get offically tested for Autism, thus we have gotten that started.
His Doc said some test needed to be done on his end before sending us to where he needs to go for his eval, which were an ABR, some bloodwork, and an MRI. I got a call from him a few days ago saying they found something in the MRI they were not looking for. Thus, we were introduced to Chiari. He said little about it, that the hole they found was about 10mm in size. He is to have another double MRI (this time of the brain and spine) on the 11th of next month and we have an appt to see a specialist to discuss the results on Sept 30th, day after his 4th birthday.

I attempted to ask a ton of questions, however his doc said it would be best to get those answers from the expert. So I am going insane with worry at what all I am reading online thus far as I don't really understand half of it. My son is not yet talking, thus it is impossible to tell if he is having any symptoms. He has allways liked deep pressure play around his head moreso than anywhere else so I do not know if it is from the pressure or if that is his way of getting relief.

If anyone can relate and/or possibly give some info in simple terms I would really appreciate it.

Thanks in advance
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Re: Hi, I'm new and so lost...

Postby jupes » Sun Jul 12, 2009 9:41 am

Hello hoosiermommy and welcome!

My 13 yr old dd was diagnosed CM/SM over a year ago and I can remember feeling so overwhelmed and lost when we were first learning about this condition. This ASAP site has been a great source of support and information. Educating yourself is important. Be sure to watch the online educational videos on this site and the chiari institute website has great videos too!

The best move I made was finally getting a peds NS who is an expert in CM/SM. Since your child is so young and has autism it would be very difficult to know what his symptoms are and if he is having pain. Sounds like you are on the right track with getting all the recommended testing. There are not many peds NS with "a lot " of CM/SM experience and many of us have had to travel. If you post where you live we could help you locate a recommended expert.

This peds board has not been as busy this summer but has many parents on here off and on who have great advice and really understand how you feel.The adult forum is more active and if you don't find answers on here you can post there too. I myself and some others are going to the ASAP conference in Madison next week so I won't be online here for the next week. Good luck and hang in there!

(((HUGS))) and Prayers!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Hi, I'm new and so lost...

Postby lttutrow » Sun Jul 12, 2009 10:06 am

Hi,
I agree with the previous response, it is so important to see a good nsg., and getting more than one opinion is also a good idea. There is a pamphlet you can access through the asap home page that helps, it is a free download. Also, on the conquerchiari.org site, there are research articles that the administrator breaks down in easy to understand language. I notice your screen name is hoosiermommy, do you live in IN? We live just east of Indianapolis, and both of my children had their surgeries at Riley.
Lori
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Re: Hi, I'm new and so lost...

Postby youngwife » Sun Jul 12, 2009 5:16 pm

Welcome to ASAP, and I am sorry that your son is a now a member in the World of Chiari. :( But, I am thankful that this has been found, so that he can get help.

If you have any questions, please ask away. You'll find some of the best supporters and lay Chiari-experts here! :mrgreen:

Blessings,

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: Hi, I'm new and so lost...

Postby Becky1219 » Tue Jul 14, 2009 1:16 pm

Hi,
We are also relatively new to the CM/SM world. Like Lori, we live just east of Indy and Jack also goes to Riley for all of his care. We really like his NSG. We found out about his CM, SM, TCS, hypoplasia of the corpus callosum, metopic synostosis, hydrocephalus, etc... this past spring. He is only 2 and doesn't have much of a vocabulary yet, so it is also hard to know exactly what symptoms he is having. He had surgery for his tethered spinal cord last month and we are waiting to see what happens over the next couple of months before deciding on the next step. The websites listed by others along with this forum have been very informative and helpful. Praying for peace, strength, and endurance for this new journey in your life!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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Re: Hi, I'm new and so lost...

Postby SamuelsMom » Thu Jul 16, 2009 4:38 pm

Just wanted to say welcome as well. My 8 year old son was dx with sm last Oct. with no cm. Like you, he was scanned for another issue (appendicitis) and was given the bonus of sm. Keep reading, asking questions and find an expert NS. Not sure how far away you are from Chicago but you will see on this site that a lot of parents have confidence in Dr. Frim. We live in Northern Kentucky and have had Dr. Frim review our sons MRI via mail.
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Re: Hi, I'm new and so lost...

Postby shaynmack » Wed Jul 22, 2009 10:52 am

Well, me too. My 2 year old was diagnosed in April, and has sm, but no *apparent* cm. I have little faith in her neurosurgeon, Mapstone in OKC. I was told a cine MRI is the way to go, but that was not what my child was given. She is in pain quite often, refuses to walk on pavement or cement or hard floors very far, so shoppin is impossible. It hurts for her to sit in a basket at walmart/target or anything, and she sleeps 4 or more hrs during the day. She goes to bed a 830pm and gets up at about 8am. She is sleeping way too much, and we are getting no help! We are a military family in OKC, need help finding drs. and willing to travel, so any suggestions?

thanks

shayla

shaynmack@hotmail.com
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Re: Hi, I'm new and so lost...

Postby starmoon » Sat Jul 25, 2009 8:31 pm

Hi shaynmack,

What part of the spine is the syrinx in? Does she have spina bifida. My nephew does. I have one that is the T2-3 level of the spine and have the same symptoms. I also have a Tarlov Cyst in the S2-3. But I am an adult. I will send you an e-mail.

Starmoon
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Re: Hi, I'm new and so lost...

Postby jupes » Sun Jul 26, 2009 9:25 am

Hi Shayla and welcome!

Sorry your little one is in so much pain! Only 1% of syrinx have no known cause. It is important to have a complete evaluation by a pediatric neurosurgeon that is a CM/SM expert
to rule out all possible causes. Those with less experience can over look things! You may want to create your own post and title it "Looking For CM/SM Expert in OK".Many of us have to travel to get expert care. This site has some great articles and some online videos that discuss CM/SM in children!

Be expecting an email from me with info I believe could help in your search!

(((HUGS))) and prayers for you and your child

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Hi, I'm new and so lost...

Postby hoosiermommy » Wed Jul 29, 2009 11:05 pm

Thanks for such a warm welcome. Sorry so long for a response but I was recently in hospital for enlarged lymph nodes.

Julie - Thing is he is not talking so I donno if he is in any pain from it.

Starmoon - No idea. He is to have an MRI of both the head and spine on Aug 11th.

Shaynmack - My son is opposite. He stopped taking naps around 21 months and still wakes up in the night. He is also opposite in that he has a great desire for deep pressure to his head. Donno if that is giving him relief for it or not.

Samuelsmom - We are closer to Kentucky than Ill.

Becky1219 - He will be going to Riley not for this but to be tested for autism. He will be 4 next month still not talking at all save for repeating some words here and there. Does not follow even simple direction so do not really know if he is suffering.

Rebecca - Thank you for the warm welcome and I am sure to take you up on questions. :)

Lori - Yes I do live in IN but right by the border of KY.

Julie - Thank you for the welcome. :)

The place we are being sent to after his MRI on Sept 30th (day after his 4th birthday) is the Neurosurgical Institute of Kentucky in Louisville and the Doc we are to see is Dr Thomas M Moriarty. His Ped said this doctor was "stellar" and even he had trouble talking to him directly as he spends 12-14 hours every day in surgery. If anyone has any comments or exp with this doc I would be all eyes.
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