2.5 year old daughter diagnosed with SM - HELP!

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2.5 year old daughter diagnosed with SM - HELP!

Postby jen_illeen » Thu Jul 19, 2007 3:30 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 cash71 » Thu Jul 19, 2007 3:43 pm

Jen,

I'm so sorry for your sweet little girl :( This is a tough dx to get, I know. I've spent my whole career as a pediatric and neonatal RN and believe me children are the bravest. She's going to get thru this b/c she has a lot going for her. For one children are amazingly resiliant. For another she has you for her mom. You are obviously love her to pieces and are doing all the best things you can for her. The most important things you can do for her at this point is to get her to an expert in the care of sm (I've heard nothing but good things about Dr. Frim), educate yourself so you can be the best possible advocate and love her.

You are doing all of the things and you are really doing all you can for her right now. Try not to worry yourself so you get sick. She needs you right now and you will do her no good if you are a nervous wreck. She will get thru this with a loving supportive family and a great doc on her side.

This board is a really wonderful place to get support and information from others that know what you are going thru. Don't hesitate to lean on us when you need to, OK? There is also a pediatric board and you may want to copy and paste your message there to so all the other parents make sure to see it.

There is really no advice to give you in regards to tx. You are doing what needs to be done right now. Get your appt with Dr. Frim and if you think of any more specific questions we'll all do our best to help you.

Sending a big (((((hug))))) your way,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby specialmomx2 » Thu Jul 19, 2007 4:20 pm

Jen,

I'm so sorry you are here! I have no sage advice right now (dinner is on the grill), but I wanted to send (((((Hugs))))) to you and your DD.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby razzle51 » Thu Jul 19, 2007 4:46 pm

Hi jEN and welcome . Here is a thread about Mayo and also I sent you a PM .

http://asap.org/forum/viewtopic.php?t=712

Dr. Frim is a excellant choice.
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 loren67 » Thu Jul 19, 2007 4:55 pm

Jen, I will pray for your family. kids really are so resilient. i also worked as a RN in the nicu and saw the same unbelievable spirit. my friends daughter had the dimple and tethered cord, had surgery and was literally running around the house in a week. i can't remember for sure if she had a syrinx as well. the toe walking i believe is indicative of tethered cord, so be sure to ask about that, they often go together, the tethered cord and a syrinx. you will be strong for her because you have to, you will rise to the occasion, believe in yourself. we are here to help, please use us and keep us posted on your little angel. don't worry about school. it will still be there after all this gets sorted out and digested. i'm sure you've heard of The Chiari Institute, that's also worth looking into. hang in there sweetie. Jenn
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Postby LFRM » Thu Jul 19, 2007 7:00 pm

Jen,

I am really sorry that your little girl has SM.

I just wanted to tell you that SM has to have a cause, you have to look for it. Finding the cause is the clue to start healing or at least stopping it. So right now you have just begin the road to diagnose, after this is completed you will start the road to treatment. This is what I have learned in ASAP.

I hope this serves and of course you have my support, hugs, prayers and best wishes.

Laura
SM T2-T7
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Postby hayla2 » Fri Jul 20, 2007 8:04 am

Dr Raffel did my daughter's surgery when her first one didn't go well from the other NS here. I like Dr Raffel. Actually, I may have to go see him again soon. My other daughter was just diagnosed with Chiari. Going to the neuro today to see when her full MRI will be. Then I am sure it will be sent to Dr Raffel for review to decide.

I am sorry about your daughter. I do know how you feel. It is hard. You mess with a mom and you might be in trouble. You mess with her kids and you can expect pain inflicted on you. But who do you attack when a disease like this gets ahold of your child? It's not fair. If you have any questions you can pm me. Melissa
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Postby SMLady » Fri Jul 20, 2007 8:51 am

Hi. Welcome to the board. I'm so sorry to hear about your daughter, but you will get a lot of valuable information and support from this board. I'm sure your daughter will be fine. Does she act like she's in pain?

Keep us posted on what is going on. There are a lot of people on this board who have children with SM, so I'm sure they can be of great help and comfort.

I have SM, but it wasn't found until I was 43. I'm now 45. Mine is idiopathic, which means there isn't a reason for it. I've been checked for everything from CM to MS to cancer. So I'm learning to live with it, and I've been very lucky that I've had good doctors who have listened to me and have helped me deal with it AND the pain.

So take care and stay in touch. You are in my prayers.

Glenna
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Postby Ryzing » Fri Jul 20, 2007 3:02 pm

You have come to the right place for support and information - you will find a wealth of both here on this site. Welcome.

I am very sorry to hear of your daughter's diagnosis. I can only imagine how you are feeling. This is in no way your fault, though. Please know that even though you feel alone you are definitely not. We will do all we can to help offer you encourgement. This probably isn't the club you envisioned your daughter being a member of, but I assure you you are in good company here.

Go in faith,

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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