Frustrated! Should our other children be tested for this?

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

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Frustrated! Should our other children be tested for this?

Postby jupes » Wed Jan 27, 2010 11:38 am

I know chiari and SM can be genetic in some cases. At what point do you get your other kids/family members checked for this? I have 2 other younger children that get occasional HA's and have other issues that are listed as possible symptoms. These symptoms are mild and I would probably overlook them if it weren't for my older child's diagnosis. Did mention my other kids symptoms to our NS and he recommends an MRI! What are your experiences and have other family members been checked?

Since this diagnosis do you feel like others label you as an overly worried parent. I tend to take my children's complaints more seriously than before and don't feel like I get any family support. It is so frustrating!!!! I have choose to educate myself on this condition so I can be a good parent/health advocate and others have choose to bury their heads in the sand! Anybody else feel this way?

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: Frustrated! Should our other children be tested for this?

Postby lttutrow » Wed Jan 27, 2010 1:50 pm

YES, I especially felt that way at the beginning of all of this. I have just tried to provide as much information as I can to those that don't seem to 'get it', and then let them think what they want to think. We are the ones who live with our kids day in and day out and see first hand what they feel like. I don't know about your kids, but mine would rather NOT let anyone else know when they're not feeling well. Hence, they don't complain in front of others, and so what they don't see, they don't recognize. I try to lean for support on those who I am closest to, and the rest I just keep peripherally informed when procedures or diagnosis happen. I find support here and with other cm/sm families too.

I have two children who have been diagnosed, and we were told that if one child is diagnosed, any others who showed symptoms should also be scanned to be sure. I don't know that the official statistics are correct about the reported incidents of it being familial, but I do know that I have met many families who have several members diagnosed.
((HUGS))

Lori
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Re: Frustrated! Should our other children be tested for this?

Postby Janice » Wed Jan 27, 2010 2:24 pm

Hi Julie,

Lori said it best.

I'd like to include that I believe you're doing a terrific job at advocating for your daughter. I think it's great that you observe the other children for signs and symptoms of Chiari. There's absolutely nothing negative to be said about a mom who loves her children and pays attention to what ails them. It's always best to proceed on the side of caution, when in doubt. Especially when dealing with serious illnesses.

It's great to educate our loved ones, and quite normal to expect support, encouragement and understanding. If it doesn't happen, never think, or feel, less of yourself for giving your all. Anyone who doesn't, or won't, follow suit, it's actually their loss. They'll be the ones explaining their actions, or lack of, to small children.

*Hugs* to you for being an AWESOME mom!

Take care and keep doing what you're doing so well. Keep us posted on the outcome of the MRI's.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Frustrated! Should our other children be tested for this?

Postby jupes » Wed Jan 27, 2010 11:31 pm

Lori,

Thanks for your response. As a mother you "really" do understand! It helps to know we are not alone.

My DD tends to hide symptoms too and just wants to be "normal" like other children. Thankfully she is in a stage now with few symptoms but does have pain if she overexerts herself. She is active again in sports and other activities she enjoys. I pray this continues! Its hard for others to understand when your kids appear so "normal"!

Janice,

Thank you so much for your kind words and support! You are AWESOME too and have helped so many!

(((HUGS))) to you both!
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: Frustrated! Should our other children be tested for this?

Postby Mayzoo » Thu Jan 28, 2010 5:26 pm

I only have one child, so no advice on the more than one. I suspect I would be watching all my others much more closely and getting them tested if I felt they needed to be checked. Sweetie's diagnosis' are ACM1, Arachnoid Cyst, Syringiomylia, Autism, Torticollis, Bi-lateral strabismus, Sensory integrations disoder, and a few smaller ones.

As far as opinions of medical staff, I felt we were blown off by medical staff far more prior to her diagnosis' than after. Once we were all but bold faced accused of abusing my sweetie when we took her to the ER during one of her unexplained pain bouts. They posted a guard at the er room door, and did basically full head/torso x-rays in an effort to prove past or current abuse. Eventually, in my efforts to root out the problems she was having (head banging, blood curdling screaming for hours or days, biting her fingers, tremors, failure to walk by 18months, etc...), I believe she had about 27 doctor appointments by the time she was 27 months old which is when she was diagnosed. I was beginning to worry they were going to try and get me on Munchhausen's by proxy :lol: .

Now, yes I still feel some of the medical professionals think mom's just over worry and find problems where there are none, but that even gets better with time and familiarity with a specific medical person.

As far as family, ours has been a pistol. On the whole, the decent majority of the immediate family has been in the camp of "better parenting would have created a better, less problematic child." So in other words, my husband and I, as "bad parents", caused all her "behavioral problems". Yes, it has been fun in my family :lol: . At her ripe old age of almost 8, six years post first diagnosis, most the family has come to the realization that she has genuine medical issues that cause her now rare outbursts of screaming/crying for days on end until exhaustion overtakes her roughly every 8 hours for 3-5 days. It is not just that she is spoiled :wink: .

And, GOOD FOR YOU for educating and advocating for your child/children. They will be so much better off with you as their advocate, you will be more stressed but they will be so much better off.
My Sweetie DOB Feb 2002, DXs: ACM1, AC, SM, Autism, SID, Torticollis, Bi-lateral strabismus. More than the sum of her diagnosis'. Reminds me of Elmo :D
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