2.5 year old SM - devistated mom

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

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2.5 year old SM - devistated mom

Postby jen_illeen » Thu Jul 19, 2007 3:36 pm

This has been the worst week of my life. When my daughter began standing and trying to walk, we noticed that she walked on her toes. She was referred to a pediatric physical therapist at around 9 mo. and underwent serial casting. She started walking at 14 mo., we thought all was fine until about 6 mo. ago she started walking on her toes again, falling a lot etc. We went back to physical therapy and they recommended a NR eval. The NR ordered an MRI of her brain and when I told him that she had a sacral dimple, of her spine too.

We went for the MRI on Monday and instead of the 1 hour they said it would take, it took 3. I knew something was really wrong. The next day we got the call from the NR. She has a "large" syrinx and was being referred to Dr. Raffel at Mayo Clinic.

Today I picked up the MRI on a DVD and my husband and I looked at the report and the images. Her syrinx extends from L1 to T4.

Devastation seems so inadequate to describe how I'm feeling. She is a wonderful, beautiful, smart child, the center of our whole world and the absolute light of my life. I would gladly die and give her my spinal cord if I could. I feel like my world is crashing down around me. I feel like I'm in a nightmare. All I can do is think the worst. I feel lost. I don't know where to begin with doctors, hospitals, treatments. I've read a lot online, but I feel overwhelmed. I feel like it's my fault. I just want to cry all of the time and I'm sick to my stomach constantly. I'm in my last year of getting a graduate degree and I can't imagine returning to school in the fall and trying to care about writing papers, meeting with clients (I'm studying to be a psychotherapist), etc.

Since Monday night, each night when she goes to bed I don't want to leave her side. When I think of what she will have to go through, I feel like I can't bear it.

Any support/advice is needed desperately. I've also contacted Dr. Frim in Chicago.

Thank you,
jen_illeen
 

Postby emarismom » Thu Jul 19, 2007 7:51 pm

Jen

Take a deep breath!! This may all seem completely overwhelming now, but you and your daughter will survive this. SM is a life altering disorder.
It is not life threatening. That is exactly how I got through it when my daughter was diagnosed with Chiari/SM/Scoliosis at 5. Her syrinx was C-2 to T-11 with full cord expansion. Her scoliosis was at 28 degrees. She had no symptoms except the scoliosis. She still has no symptoms and she leads a completely NORMAL life!!

She did have to have decompression surgery. She was in the hospital for three nights and out of school for two weeks. Now she freely shows everyone her scars (she has two-one on her head and one on her leg where they took a skin graft).

I too believed that my world would end when Emily was diagnosed. It did not end. It has been almost three years now and she is doing great.

If you have any questions, just ask.

Michelle
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Postby angie7 » Thu Jul 19, 2007 8:22 pm

I am so sorry to hear about your daughter. I cant imagine the emotions running through your mind right now. And I cant imagine a child having to deal with this either...

I am glad that you contacted Dr Frim. I am watching my twins like a hawk for any signs and he would be the only doctor that they would see if they did have it.....You are definately going in the right direction by having a SM specialist look at her films and possibly see her..
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Update Ferren Has Apt. w/ Dr. Frim

Postby jen_illeen » Fri Jul 20, 2007 2:22 pm

Hello everyone,

I just wanted to thank everyone for their wonderful and supportive messages. It is such a comfort to know that we are not the only ones going through this. As far as an update, Ferren has an appt. with Dr. Frim on August 30th. I guess he's going out of town and he's seeing her on his first day back. Six weeks sounds like a long time, but we're hoping to get another opinion in the meantime. Her NR is making a ref. to Dr. Meneesez in Iowa City too. Luckily, we're only about 2 hours from Iowa City, four hours from Chicago and three hours from Mayo.

I took her to buy new shoes yesterday and she had a ball. She kept saying, "I'm so excited," and running around the shoe department. She also said, "I want two pairs." Being the big softee I am, I bought her two pairs.

As far as my husband and I go, we go between almost "normalcy" and being pretty sad. Seems like first thing in the morning and right before bed are the hardest times.

I'll probably be doing some PMing soon to hear a little more specific info about some of your children's cases. For now, it's time to put Ferren down for a much needed nap.
jen_illeen
 

Postby angie7 » Fri Jul 20, 2007 9:13 pm

Just an FYI, I heard that Dr Menezes will be retiring shortly so I'm not sure if you want to get involved with a doctor, then have him retire on you...Just thought I would let you know that.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Wow!

Postby bchalman » Fri Jul 20, 2007 10:17 pm

You are living my life about a month ago. My heart and prayers go out to you. My son, age 8, was also recently diagnosed with a large syrinx. We live in texas and just got back from Chicago yesterday. We had our appt with Dr Frim and will return on the 30th for surgery. I would skip seeing the doc at Mayo clinic and go straight to Frim. We stayed at the Ronald McDonald house there and I was able to meet with several other families who are patients of Dr. Frim. He is wonderful, knowledgable and sought from people everywher. We only had to wait a week to get in, but we did have a wait in his office, but it was worth it. I too felt very overwhelmed with all the scary info out there, but know, it is not always negative. I would love to speak with you and share the info I have received recently, please email me if you would like to talk at bchalman@yahoo.com.

In my prayers,
Brandi
bchalman
 

Menezes

Postby Sara » Sat Jul 21, 2007 7:27 am

Dr Menezes is a top doctor in the field. he is on ASAP's medical advisory board. I am sorry you are dealing with this diagnosis but seeing an expert is the best first step. The good news is, with proper treatment, most children do quite well.
Hang in there-

Sara
Holly's mom
Sara
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jen_illeen

Postby razzle51 » Sat Jul 21, 2007 8:00 am

jen_illeen Did you get my PM ? Menenze is another excellant choice . Angie where did you hear he was retiring ? He does look about that age , thats where we need to help look for more experts . They are out there and we need to find them . :)
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby lovemyblessings » Sat Jul 21, 2007 3:29 pm

emarismom wrote:is a life altering disorder. It is not life threatening.


What a great way of putting it. I hope you don't mind, but I have already borrowed these words when people have asked my why I am not hysterical about now having two children (that we know of) with ACM1.

To the original poster~What you are feeling now is VERY normal. Give yourself some time to adjust to the diagnosis. Read everything you can. Learn all the treatment options and the pro/cons of each. Write out your list of questions for the doctors. And once you have done everything humanly possible to prepare, you have to just wait. If you have faith in the Lord, it's a good time to remember that His strength is perfect when our strength is gone. It's a good time to lean on Him. I am also finding a LOT of strength and comfort in the song "Praise You in This Storm" by Casting Crowns. (http://www.buy.com/retail/product.asp?sku=201935861&loc=18250) If I can be of any help, let me know. My children don't have sm - they have Chiari, but the feeling as a parent is very similar, I'd imagine.
~Dawn~
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Re: jen_illeen

Postby angie7 » Sat Jul 21, 2007 9:46 pm

razzle51 wrote:jen_illeen Did you get my PM ? Menenze is another excellant choice . Angie where did you hear he was retiring ? He does look about that age , thats where we need to help look for more experts . They are out there and we need to find them . :)


Sent you a pm, Roz. I will post what I told her. My dh is friends with a doctor that works with Dr M. He told my dh that he will be retiring shortly, didnt give a day or anything though.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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