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#121 of 251 Old 11-20-2009, 09:05 AM
 
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I would definitely be pushing for a second opinion foot/knee/hip orthopedic eval, I'm finding it hard to beleive they're not looking into mechanical issues more, too. If there's intoeing and it's a gait mechanism that's the problem I bet there's a lot more options for helping it along.


Heather, WAHM to DS (01/04)DD (06/06). Wed to DH(09/97)
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#122 of 251 Old 11-21-2009, 12:02 AM
 
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been thinking about you and finally got a chance to check this thread. i'm sorry you are in this limbo of not knowing- that is always so so hard! but please, don't look at videos or do too much googling- it will only freak you out more!

~helen~ mama to 5 yo twins jonas and micah and my 2 yo baby boy eli
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#123 of 251 Old 11-21-2009, 01:05 AM - Thread Starter
 
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She now has a sore throat, runny nose, a bit of a cough, and a fever. I don't know if I should take her to the doctor or not. On the one hand, she doesn't seem that miserable or anything and it's probably just a little something (since just last night the doctor said her ears were fine and her throat was just a little red) that will clear itself out. At the same time, should she get something that's tough to clear up they will have to move this MRI again. I guess we will wait and see.

The ortho appt is going to take a bit of doing. The first one we saw with her hip dysplasia is out of the question and the second is now mostly specializing in spine issues. We called today and he'll get back to us - either he will see her again because he's already seen her once OR he'll refer us to someone else at Childrens. It takes a few days of faxing things and getting records so it may be after the MRI before we can see whoever it is anyway.
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#124 of 251 Old 11-23-2009, 08:19 PM
 
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have you taken her to a chiropractor yet?
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#125 of 251 Old 11-24-2009, 12:00 PM - Thread Starter
 
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I have not taken her to a chrio yet (but have one lined up that I'm told is really good with children). Some of what I've read about dystonia specifically warns against chiropractors and children with dystonia. I'll see if I can find it again. I'm open to it as soon as I can find something that says it won't make things worse. I LOVE my chiro and it's his partner that we'd be seeing so...I'm more than willing.

She has been progressively more wobbly since Sunday. She's also been on her feet a LOT, jumping on her little trampoline (indoor with the grab bar), and doing her knee scrubbing thing. I'd say she's as wobbly as she's ever been, but without the kind of exaggerated thing she did with the doctors. She doesn't seem to be hurting and she doesn't seem bothered by it, but it's so hard to watch. I hope that this kind of indicates it's a knee thing?

Still waiting to hear about seeing an ortho. Sometimes I'm so tempted to just find a new ped and start over, see where that leads. I love her ped, I love the neuro, but I'm feeling desperate. When I thought she was getting better it was scary, but seeing her back almost where she started is...yikes.
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#126 of 251 Old 11-24-2009, 02:08 PM
 
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What a journey you are one.

You're doing great. Your little girl is lucky to have you as her mama.

I am a 40 year old unschooling, belly dancing, artist-mama of one almost 8 year old. I just had brain surgery and blogging.jpg about it a bit because it's just so surreal.
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#127 of 251 Old 11-24-2009, 03:04 PM - Thread Starter
 
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Thanks. It's just a really hard day. She's tripping a lot. I just read a discription of a dystonia gait that sounds a lot like her. I also read that 90% of the time it starts in the leg, it progresses. I am heartbroken and sad and angry. I can't stop crying. It's just so hard to watch her. She wants to run and she can't. She rode her bike around the block and when she went to get off, she just kind of...I don't know, she needed a lot of help getting across our front yard. If it's a knee problem, I really need to get someone on it SOON because should she be walking on something that's giving her that much trouble? I don't know. I just don't want her to be facing this big life-changing thing. I keep thinking about her four months, running away from me and laughing and how can we be here now? I'm so scared.
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#128 of 251 Old 11-24-2009, 04:36 PM
 
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I have waxing and waning mobility impairments. I just wanted to reassure you that in an industrialized country with modern adaptive technology, disability rights protections, and an information-based economy, a mobility limitation does not have to be the tragedy you are concerned about. When I was at my lowest mobility, using a walker and occasionally a wheelchair, I traveled all over England on trains; went from England to Scotland and from England to California on planes; took walking tours, even over rough terrain (my walker had all-terrain wheels like a jogging stroller); and generally lived a normal life. My life now, with some limitations but not enough to need mobility aids, is also pretty normal.
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#129 of 251 Old 11-24-2009, 09:29 PM
 
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Hey mama, just wanted to let you know that I've been thinking about you guys. I'm so sorry you're going through this. Sending good thoughts and wishes your way.

Kate, mom to 7 year old Djuna and 4 yr old Alden. Missing our good friend Hal the cat who died June 2, 2010

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#130 of 251 Old 11-24-2009, 10:10 PM - Thread Starter
 
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Thank you, we will take all the good thoughts and prayer we can get.

Quote:
I have waxing and waning mobility impairments. I just wanted to reassure you that in an industrialized country with modern adaptive technology, disability rights protections, and an information-based economy, a mobility limitation does not have to be the tragedy you are concerned about. When I was at my lowest mobility, using a walker and occasionally a wheelchair, I traveled all over England on trains; went from England to Scotland and from England to California on planes; took walking tours, even over rough terrain (my walker had all-terrain wheels like a jogging stroller); and generally lived a normal life. My life now, with some limitations but not enough to need mobility aids, is also pretty normal.
Lolar, that's certainly what I hope for my daughter - a pretty normal life with some things she can work around. My first hope is that it's just some fixable knee thing but if not that, then something that won't change her life or her plans for herself too much. I know she's only three but she's been counting down till she's old enough to take dance for a long time. I know that's not a tragedy and worse things happen to children all the time but as her mother, that's heartbreaking. Seeing her today, pretty much at her worst, I think ok. I can live with this. This is pretty wobbly but I can live with this. And then I read that it can be progressive and profound and I think it's not about ME living with it, and how hard it will be for her to live with what this could eventually be. And there's nothing to do for this particular thing but react to it, you know? I can't get her better care and stop or cure it. It's so damn scary. I feel like I can't breathe. I feel like I could just go outside and start screaming and never stop but it wouldn't do any good.
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#131 of 251 Old 11-25-2009, 10:35 AM
 
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I'm sorry you're going through this, I wish I had something helpful to ease your worries, but wanted to send you .

Hopefully it is a mechanical issue with her knees, or an issue that can be stabilized soon.

Thinking of you & your family.

Mama to my 2 boys
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#132 of 251 Old 11-25-2009, 11:09 AM
 
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Hoping you get some answers soon and that she can be successfully treated.

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#133 of 251 Old 11-26-2009, 01:27 PM - Thread Starter
 
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She is just getting worse every day. She's falling a lot this morning. I don't know what to do. I am going to call her ped tomorrow and tell him and see what happens. If nothing happens, we're getting a new ped.
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#134 of 251 Old 11-26-2009, 01:49 PM
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I don't have any words of wisdom, I just want to offer you my support.

Catherine
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#135 of 251 Old 11-26-2009, 03:49 PM
 
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She is just getting worse every day. She's falling a lot this morning. I don't know what to do. I am going to call her ped tomorrow and tell him and see what happens. If nothing happens, we're getting a new ped.
I am so sorry to hear this. My friend was in a similar situation with her daughter last year and finally ended up just driving her to the best Children's Hospital she could get to and taking her little one into the ER. It took them about 5 hours to get a diagnosis of Juvenile Rheumatoid Arthritis that day. Once they did that everything started to fall into place for them. Before that they had spent at least 3 months running from doctor to doctor trying to get answers.
Hang in there. I hope you can find the answers you need for your precious dd.

Mother of two. : 4/05 and 1/07 Wife of one. : 7/01
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#136 of 251 Old 11-26-2009, 09:34 PM - Thread Starter
 
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I have been thinking of doing exactly that. There is a Children's hospital about an hour away from us and I just want to show up and say, ok, DEAL WITH US. HELP MY CHILD. My perfectly healthy child was fine a few months ago. She hit all her milestones normally, if a little on the early side. She was running and jumping and FINE and now she's falling down when she tries to make a short slow walk to the bathroom. Shouldn't someone HELP HER.

If I take her to the ER, do they have to deal with us or will they just send us home? Will they at least set something up for someone to see us?
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#137 of 251 Old 11-26-2009, 09:43 PM
 
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No advice or wisdom, just support.

wash.gif  Me  + bikenew.gif Dh =  broc1.gif  Dd1(9 yrs) + hearts.gif  Dd2(6 yrs) and blowkiss.gif Ds(3.5 yrs)
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#138 of 251 Old 11-26-2009, 11:52 PM
 
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If I take her to the ER, do they have to deal with us or will they just send us home? Will they at least set something up for someone to see us?
It wouldn't be an emergency, so they don't have to treat you, but assuming you have insurance, there is no reason why they wouldn't treat you and once you are through the door, the doctors tend to just treat what they are faced with, which does sometimes mean acting like a primary care doctor. On a couple of occassions I've gone to the ER pretty much just to get pain meds for things that were already being investigated through the usual channels, but doctors seem to like to solve problems and they'll dig deeper, plus at a children's hospital where you might need referrals regardless of your insurance you might get in to the specialists faster.

Anne, Christian mummy to Nathanael 05/28/03, Ada 06/10/05, Grace 05/24/09
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#139 of 251 Old 11-26-2009, 11:59 PM
 
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I just wanted to offer my support and say that I hope you find a solid direction for this situation soon, mama!

~Mylah~ wife to Steve and constantly amazed mom to beautiful baby Bodhi, born Jan 2009.
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#140 of 251 Old 11-27-2009, 01:57 AM
 
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Honestly, I think you should just take her in. I want you to get the answers you need! Take her in, tell them that she is much worse today - the worst she has been. Make it sound worse than it is if need be. My GP, cool guy that he is, would totally agree. At one visit recently he phoned the hospital while I sat there - warning me ahead of time that things were not as bad as he was going to make them sound - and pushed to get me in to see a cardiologist as soon as possible. The specialist he spoke to didn't think I needed to be seen urgently, and after hanging up the phone my dr was pissed at himself for not lying about which kind of heart murmur he had heard (to make it sound more serious). I commented on how it was f'ed up that he would have to lie to get me the care he thought I needed, and his take on it was that it was the specialist's job to screen to make sure the neediest got in first, but it was his (my dr's) job to make sure that I was ok, and if that's what it took then that's what he would do. In this case it's your job (which you are doing an amazing job at mama!) to make sure your dd is ok, and so I officially absolve you of any guilt if you decide to fudge things a bit if you go the ER route.


Kate, mom to 7 year old Djuna and 4 yr old Alden. Missing our good friend Hal the cat who died June 2, 2010

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#141 of 251 Old 11-27-2009, 05:18 AM
 
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s mama.

you're dealing with the hardest part of being a mama right now, how to take the best care of your little one that you can.

healing wishes for your dd.

eh. who needs a signature?
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#142 of 251 Old 11-27-2009, 05:34 AM
 
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She knows exactly what she's doing it. Is it irritating, yes. At home ignore it. If it means she pees her pants then she pees her pants & at 3.5 she can definitly help clean that mess up. If she eats cold food because it took her too long then so be it.

When you're out, give 1 clear reminder that if she falls down like that & cannot walk properly you are leaving. No if's, ands or buts about it. You will leave. She will act like she is today, upset that you went home but it will be reinforcing to her that the behaviour is not acceptable.

You need to be firm in your expectations, give 1 reminder & don't bring attention to it again for that event. She will not be happy about it, but she is old enough to understand that her actions have consequences.
This is what I would do.
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#143 of 251 Old 11-27-2009, 07:05 PM - Thread Starter
 
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More update (I posted this in SN forum as well).

She is much worse today. She can't really walk without leaning on someone. I don't know what to do for her or who to call. We saw her ped this morning and she was walking better but now it's just really bad. She has a sinus infection and the beginning of an ear infection so we're trying to clear that up so she can have the MRI. It's not till the tenth. How are we going to wait that long? Shouldn't we be able to get in somewhere sooner? How is it possible she's this bad and has to wait for that? And the ortho won't call us till Monday at the earliest.
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#144 of 251 Old 11-27-2009, 07:21 PM
 
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I would call the ped Now, before the weekend. Tell them that it is so much worse now (since this morning) and mobility is decreasing fast and tell them you want the most aggressive option available - mention the ER and see if there are any other recommendations from the ped. If not, head to the ER.
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#145 of 251 Old 11-27-2009, 08:07 PM - Thread Starter
 
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I am trying to tell myself that since both the ped and the neuro have said "we've ruled out all the big scary stuff" and neither is acting very urgent, maybe I can believe them that this is something managable.

I will call the neuro and get in for Monday and if things get worse, I'm bypassing the ped and going to the ER.

Also, they can not do the MRI till this infection clears. I keep forgetting that. She will have to be sedated (also scary) because she's only three, she can't be still that long. And she's terrified of loud noise. I am thinking as soon as the nose stops running, I'm taking her to the ped that day and having him give the all clear on the infection and then I will be happy to go ANYWHERE for an MRI. The neuro specifically wanted us to use a perticular hospital but I don't care. I will go wherever they will see her.
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#146 of 251 Old 11-27-2009, 11:58 PM
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I continue to think about you and your daughter and am sending you both positive thoughts.

Catherine
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#147 of 251 Old 11-28-2009, 12:23 AM - Thread Starter
 
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Thank you so much, and really everyone who keeps listening to me talk about this and for keeping us in your thoughts and prayers. It means SO much. Thank you.
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#148 of 251 Old 11-28-2009, 01:29 AM
 
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I think you said there was a Children's Hospital nearby...honestly I would go there if she gets any worse. They would absolutely be able to do the MRI even if she does have an infection. I have personal experience with a close family whose daughter had similar progression of symptoms...and kept getting blown off as well! So frustrating. After witnessing their journey, I do feel that getting to see specialists in CHILDREN was what finally got them diagnosed quickly. I would look at the big picture here and say...okay you have a previously healthy child who is unable to walk without support and is progressively getting worse over a period of time. To me...that is something that needs to be dealt with on an urgent timeline.

SugarMama to Chatterbox Zoe (almost 4) and Locomotive Miles (2)
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#149 of 251 Old 11-28-2009, 10:41 AM - Thread Starter
 
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They would do an MRI with sedation, even with an infection?

I'm worried that if I just show up in the ER on a Saturday and she's not in any pain, they're just going to send us home. That's pretty much what their website says. I am worried about exposing her to a lot of stuff when we SO need her to be healthy and then not getting the MRI on the tenth. I will call her ped and neuro ask once the runny nose dries up and the infeciton is gone, will he please send us ANYWHERE for an MRI.

It's like I don't know how the system works. CAN I just take her somewhere? Will they see her? Is that what I'm expected to do? Yesterday, her ped didn't seem all that urgent that she had gotten worse (as with Dystonia, it is up and down and that's normal, and if it's an injury she's not hurting) and the Neuro didn't seem all that distressed that the MRI got moved. It's not like they forget about us as soon as she leaves the office, both have called us out of hours at home to see if she's getting better so I know they're aware of what's going on. It's so confusing.
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#150 of 251 Old 11-28-2009, 01:01 PM
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I can't tell you what I would do in your shoes. But I'm not a hundred percent convinced I'd try the ER or even try to get the MRI moved up.

If you feel confident that the ped and neuro have ruled out anything that would be made worse by waiting and your daughter isn't in pain, I think I would wait it out. Your doctor probably has a reason to want the MRI done at a particular place. It might be something that doesn't really matter to your daughter's care (like a friendship with someone at that place), but I think it might be that he knows the images are better there. Or get read sooner. Or they are more experienced with sedating little kids. You could always ask why that place.

If you don't feel sure that the doctors have ruled out things that would get worse by waiting, then seeking an urgent second opinion makes more sense. It's possible that you would get that by going to the ER. But it's also possible they would see her and send you home with a referral to another neuro. . . . Whether or not that referral would get you in any sooner is going to vary by doctor I think. You could also try just calling neurologists offices, including the department at the children's hospital to see if you can get in quickly for a second opinion. You never know when someone might have a cancellation.

Anyway, I don't think I've been very helpful. I guess I just wanted to say that I think you could reasonably go either way--seek urgent help or wait.

Catherine
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