Why does this have to be???

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

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Why does this have to be???

Postby nature » Fri Jan 22, 2010 2:26 pm

My daughter had to go for another MRI today and last night she just cried and cried and begged not to have to have another one. The impact of this whole thing finally hit her last night and it was the saddest thing. I wish I could just take it all away from her and put it on myself. We have been blessed though that people in our community are really rallying behind her on this. People are doing fundraisers for us to help with expenses and a lady made Tshirts that say "God has the Power" so... And Pray for Tay-Tay(taras nickname) on the back! I think seeing all the people wearing the shirts really made it hit home with her. She is so dreading this recovery and I dont know how to help prepare her for this surgery. And suggestions would be so appreciated.

Thanks

Nature
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Re: Why does this have to be???

Postby sydney'smom » Fri Jan 22, 2010 3:10 pm

Nature:

I wanted to let you know that you are not alone. My 10 yr old DD was dx in November. But, we are lucky that it is still a wait and watch situation for us. She has good days and bad days, but as long as we can manage her pain and she doesn't start to develop neuro problems we are going to hold off on the surgery.

I can't not imagine being 9 years old and having to go through this. I am like you, I wish it was me. They are so young and to think this is something they will be dealing with the rest of their lives. I try to tell myself that it could be so much worse. It isn't terminal, she is able to still do many of the things other kids do, it just might be a little more challenging for her.

I hope this has been helpful. I know it has helped me to know that I am not alone in this journey that their are others out there that I can lean on. Keep your chin up. You will be in my thoughts and prayers.

Julie
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
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Re: Why does this have to be???

Postby memom » Fri Jan 22, 2010 3:57 pm

Today, my daughter also had an MRI. We waited to tell her until the last night partly because this is her birthday week and also because this is forth one in 1.5 years. She was decompressed in July 09 and did well for a few months. However, the symptoms are returning. We are all devastated. I know how you feel, I wish I could take all the pain away too. It is not fair, not at all.

MaryEmma has not returned to school since the holidays. We arrange for her schoolwork to be done at home for now. The classroom was causing to much stress. She has developed light and hearing sensitivity (among many other symptoms) which does not allow her to concentrate in class. She was sooooo sad, it was heartbreaking. Once we removed the stress of coping in the classroom, her attitude improved greatly.

Our family is coping. We have learned to live hour by hour, day by day. It was a huge adjustment for all of us. We have learned to be thankful for each good day and we have also learned how to deal with the not so good ones. As hard as it is somedays, we have to be strong for our children.

Know that you and your family are in our thoughts and that we share your pain. Please keep us posted and we wish the best!

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: Why does this have to be???

Postby youngwife » Fri Jan 22, 2010 7:44 pm

Nature,
You are very blessed to have such community support behind you. Many of us don't have that, and it is a very lonely feeling. :(

Our family also has been devastated by Chiari, and is living minute by minute, day by day. This doesn't seem fair, but then when I think of others that suffer far more, I am forced to consider my many blessings that are so undeserved.

May the Lord be with each of the families and patients that live with this monster called, pain. :cry:
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: Why does this have to be???

Postby 3kidssane » Sat Jan 23, 2010 10:29 am

DD age 6 was diagnosed in Sep. Thursday evening we were shopping for diapers at ToysR Us. We decided we would look around for a bit. DD found a skate board that she wanted. I immediatly told her to get off of it. That's when it happend, She began to ask questions. "Will I have this forever?", "Is my back still hurt?" How long will I have these restrictions?" After answering her questions the best that I could she said, "That means I will never be a gymnist." She was so sad and so was I. How do you crush the dreams of a 6 year old? It is heartbreaking as a parent, but having the support of others does help.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Re: Why does this have to be???

Postby nature » Mon Jan 25, 2010 10:27 am

Thanks everyone for the responses. Got the mri of the lumbar spine back this morning which showed she has bilateral neural formanial stenosis. She told me last night if this one came back bad she was going to die, just fall over and die! I just dont know how to even tell her that this one showed something too! I am like others, thankful this is not something terminal but it is shattering her dreams and I just want to scream!!!!!!!
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Re: Why does this have to be???

Postby memom » Mon Jan 25, 2010 1:40 pm

I am so sorry for everyone who suffers from this. It impacts our life in so many ways. Sat. evening we were at a birthday party with friends and the noise in the house was too much for MaryEmma. She had to go watch TV upstairs away from everyone in order for us to stay through dinner. She was okay with it, but she missed being with the other kids. I came home that night and had a good cry. It is not fair - soooo, go ahead scream - scream loud and long if it makes you feel alilttle better!

I am thinking of your family...

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: Why does this have to be???

Postby nature » Mon Jan 25, 2010 2:24 pm

Thanks Lauri!

I am so sorry your child has this problems also. As well as everyone else who has it. I feel like I just need to vent. I dont want to tell her about the mri, but I know she ll ask. And my son has started getting sick now. The doctors thinks he is hypoglycemic and might have asthma. I just dont know if all the things going on with him could be from stress from worrying about his sister. I have had to pick him up once a week from school for the past month and I am just at the end of my rope. I feel like I need to quit my job and just take of medical problems but lord knows I cannot afford to. But, feel like I might be about to lose my job anyways. Just dont know. And now I am worried about the disc buldges and forminal stenosis they found. What does that mean? Will this mean another surgery all together or will the decompression take care of that too?? I left a message with the NS office but it will probably be a couple of days before they call me back. I got the report from her PCP which cannot tell me anything! I just feel like ready to explode!!!!!
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