WWYD/just need to be sad - Page 7

[The4OfUs]

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.

[titania8]

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!

[NiteNicole]

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.

[Sepia]

have you taken her to a chiropractor yet?

[NiteNicole]

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.

[Starflower]

What a journey you are one.

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

[NiteNicole]

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.

[lolar2]

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.

[pianojazzgirl]

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.

[NiteNicole]

Thank you, we will take all the good thoughts and prayer we can get.

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.

[daisymama12]

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.

[DaughterOfKali]

Hoping you get some answers soon and that she can be successfully treated.

[NiteNicole]

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.

[crl]

I don't have any words of wisdom, I just want to offer you my support.

Catherine

[daytripper75]

Originally Posted by NiteNicole

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.

[NiteNicole]

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?

[Surfacing]

No advice or wisdom, just support.

[annekh23]

Originally Posted by NiteNicole

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.

[amylahminute]

I just wanted to offer my support and say that I hope you find a solid direction for this situation soon, mama!

[pianojazzgirl]

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.