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Aggie

Prayers Needed For My Little One

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Yeah I do not get why to pop it out either. I can see manipulating it to see if it is tightening up but popping it out seems counter productive.

Good luck, I hope no surgery in her future.

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what I don't get is WHY the doc feels the need to pop the joint in and out. From what I've learned from my own hip problems, you never ever want to pop it back out if it's already in!!!!! That really scares me that your doc is doing that.

Glad she is doing better..but have to agree with Serah..this don't make sense to me with the popping in and out...

AD

It has crossed my mind many times, too, but I am not a doctor... if the point of the harness is to help her hip get back and stay back, why would he pop it out to "check" it? And like the others said, why the good one?

Poor baby, hope she continues to make progress.

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Have you considered asking for a referral to the Shriners hospital? Even if you are ok with the current doctor, it wouldn't hurt to have a second opinion and at the Shriners hospital they have orthopaedic specialists who have seen and worked with a LOT of kids with similar issues... It's also completely free there. We went to the Shriners hospital in Lexington, KY and they were great.

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why the good one?.

He said he thought he knew our case well enough that he thought that both of her hips were bad and that the hip dysplasia was on both sides. I thought he should have at least looked at the folder before to see what kid hes looking at and to see what was there problem hip. I almost cried when she was screaming. I shouldnt be the one to tell him "hey that hip is ok its this other one thats the only messed up one. I think thats the only reason he did the xray on the hip, because she wasnt scheduled to have any xrays done that day. I think it was to make sure he didnt mess up that side. He had said that her hip used to pop out freely he didnt have to this time she was so tense that he wasnt able to check it properly.

Have you considered asking for a referral to the Shriners hospital? Even if you are ok with the current doctor, it wouldn't hurt to have a second opinion and at the Shriners hospital they have orthopaedic specialists who have seen and worked with a LOT of kids with similar issues... It's also completely free there. We went to the Shriners hospital in Lexington, KY and they were great.

Im going to my pediatrician today. Hes the one that has to give me a referral because shes on medicaid. I looked it up and theres one in Houston TX which is the closest and one in Galveston, TX. Hes suppossed to be experienced in this area he said hes dealt with alot of these cases. But he feels that she might be one that it doesnt work on.

Im at a loss for words. She has a bump that showed up on her head. My pedi says its a bone the orthopedic says its not. And no other dr here will see her without a referral. I need to move to a better town that has better doctors. I absolutely hate this town! Ive done research and it looks like a dermoid cyst. Ive asked other moms on babycenter and thats what it seems like. She hasnt fallen she hasnt been dropped its just puzzling. And its growing in size so today im taking her back to the pedi and demanding he run some tests. And im also going to check into Shriners. But its up to him if he lets me.

Oh heres a pic of the bump maybe yall have run across it.

13046_10151503914985407_1542455623_n.jpg

480460_10151503914975407_397642724_n.jpg

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Aggie, im so sorry about your little one, she's awfully cute! I will be putting you both in my prayers.

Im noticing that in the last picture there is a little red spot in the middle of the circle is it possible she got bit by an insect? That would explain the sudden apperence and the continued swelling.

Im also thinking that you need a new dr. We had to go 200+ miles to find a good childrens heart specialist.

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My poor baby we took her to the pediatrician today. Turns out she has Nystagmus. It causes her eyes to jerk involuntary and its genetic. I wouldnt know probably from my side because i was adopted. The thing on her head is a Cyst. He said he would keep a closer eye on it but it didnt seem like it was dangerous. No referrals unfortunantly except to Cooks.

Small Time Hay Thats what we had thought maybe a spider but unfortunantly it has 3 red dots on it now and its been there since Jan 8. I had asked pediatrician he said "BONE" I asked the orthopedic (bone) dr and he said "NOT BONE" so back to pediatrician and this time he actually investigated it and finally said "CYST" man i swear the drs around here are just doing enough to get by.

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Did he say what his reason behind saying NO to the referal was? Im wondering why he was so nonchilant about the Cyst, it seems to me he's in the business to heal children not diagnos only.

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do you absolutely need a referral?

I only ask because I was having wrist problems as a teen - we knew it wasn't broken but it was causing me such intense pain. My mom called a specialist and they said we needed a referral before they could arrange an apnt. She simply told them to get real and make the appntment...and they did....

worth a shot? Or is it medicaid that is requiring the referral?

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If I am not mistaken nystagmus is often associated with Benign Positional Vertigo, and if this is the case with your wee one there are some maneuvers to help her control symptoms, most notably the Epley maneuver. It is non-invasive and non-traumatic. Maybe ask your doctor if it is something that can help your girl; here is more information on that:

http://emedicine.medscape.com/article/82945-overview

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Did he say what his reason behind saying NO to the referal was? Im wondering why he was so nonchilant about the Cyst, it seems to me he's in the business to heal children not diagnos only.

Only said that he worked out of Cooks. Strangely enough though he is now referring me to someone from Austin, TX for her eyes. I think i am going to arrange a visit to Shriners while i am down there and just state that I need to have her seen for a second opinion and that my dr has already given me a refferal for Cooks and refuses to give another refferal. Couldnt hurt to try right. Just got to see how many hoops i need to jump through to get her seen.

do you absolutely need a referral?

I only ask because I was having wrist problems as a teen - we knew it wasn't broken but it was causing me such intense pain. My mom called a specialist and they said we needed a referral before they could arrange an apnt. She simply told them to get real and make the appntment...and they did....

worth a shot? Or is it medicaid that is requiring the referral?

Yes I need a referral. Unfortunantly the medicaid that I have for her has that as a requirement i guess that would be the way to say it. I had to go through a million and one hoops to have her seen by a doctor for a thrush case when she was around a month old and just had to wind up taking her to the ER to have her finally seen because of medicaid having her Pedi. down wrong.

If I am not mistaken nystagmus is often associated with Benign Positional Vertigo, and if this is the case with your wee one there are some maneuvers to help her control symptoms, most notably the Epley maneuver. It is non-invasive and non-traumatic. Maybe ask your doctor if it is something that can help your girl; here is more information on that:

http://emedicine.med.../82945-overview

My Pedi. said shes fine wouldnt hurt her in any way. I somehow beleive that he has no idea what he is talking about.

We are thinking of moving to a bigger town to find a better doctor for her. We go Monday back to the Orthopedist and I am going to question what is the reason behind his popping diagnosis? What good does it do if we are trying to keep it in not out.=

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I'm so sorry to hear about her new diagnosis :(

If you are interested in the Shriners hospital just make sure you talk about the one in Houston since the other one is for Burn patients.

ETA: Since Shriners doesn't charge you anything you shouldn't have to worry too much about the medicaid... :)

http://www.alzafar.o...hropy/hospitals At the top of this page there's a toll free number you can call, it says " If you know of a child Shriners Hospitals might be able to help, please call our toll-free patient referral line:

In the U.S.: 1-800-237-5055."

So you might be able to get in there for a second opinion without the referral from your pediatrician.

Edited by loopyhorse

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Oh man! I am sorry to hear about all the troubles!

I would be po'd about the Dr popping the joint in and out of place!! Especially her

good hip!!

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This is quite an ordeal you and your little one are going through. I am sending prayers your way and hope that you can get someone to help you.

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If you have to bring her to Austin for the eye doctor, let me know. I live just outside of Austin and have a place you can stay.

Shriners does not charge so call them before you let them do the surgery.

Texas Health and Human Services also has a program that will pay you fifty cents a mile every time you take her to the doctor if Medicaid is paying for the doctor.

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I'm sorry Aggie the you and your little one are going thru this but remember you are doing what is best for her, keep your chin up!

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First off small vent :mad:

I got a call from my regular pediatrician on Friday. Of course i didn't have my phone at the time. Why I don't know? So I called them back yesterday to get this message from the head nurse..

Me: Yes I had a missed call about Natalie's appointment with an Ophthalmologist.

Nurse: Yes, I need you to call your medicaid and get a list of provider's that accept it and find an Ophthalmologist that takes it here in TX.

Me: Okay.. O.o so would I need to make the appointment then?

Nurse: No I would have to since you need a referral but I need the list to make it easier so im not calling every provider out there that doesn't take it.

My thoughts on this where.. Excuse me is it not your job to call get a list and find the provider since you are the nurse and you get paid to do this as your job? Why the he.. would I have to do your job for you. Isn't it much easier for you to dial the number and request one yourself and have them fax it to the job? Why do I have to call for them to mail me one. It would be much easier if you just did it. Im so tired of having to continually put up with people that want everyone to do their job so it's easier for them. I know I dont pay you like every other paying customer but come on I have enough to do I dont need to do your job too!

Now for the UPDATE: :(

So we had the appointment at 10:00 am. We live a couple hours away so we took off at 7:30 to have enough lee way time. Well no when we got to a town called Cresson, TX something happened on one of the railroad tracks. No vehicle was moving either way at a four way stop. We must have stayed there for like 15 minutes before you see someone going westbound take the first gutsy move to go around the tracks. After they went about 20 something cars followed. Then we had cars going eastbound do the same thing. Of course my husband decided he wanted to be the first from the southbound lane to go westbound take off.. :ashamed0002: After a terrifiying trip through the opposite lane through a patch of dirt and over a downed fence we got around the track we went through the lot at the railroad and as soon as we went about 10 cars followed. Guess it takes one person to do it first before anyone will think about it. Still scary so this made us about 40 minutes late to the appointment.So already we were off to kinda a bad start going in.

When we got there after about 20 minutes of waiting they took us back to the room. Baby Girl was happily drinking a bottle when the Dr walked in about 10 minutes later. We undressed her and he immediatly tried to work her legs. Apparantly she doesnt relax enough to let him work her right leg to where he can tell if it is working or not. SO off the harness came and he scheduled for her to have Xrays immediatly to see if it is where the bone needs to be. Off to xrays we went. Only for her to be whisked away from me and the nurse try to play mommy when she got upset. They tried to hold her down and get two xrays all the while she was very upset and crying and screaming and wouldnt settle down. So me being the rebellious one that I am walked in the room and immediatly tried to console her but the nurse wouldnt move out of the way. Instead she was trying to talk to her which was not going to work as baby girl was very upset with her already from her pinning her down. Dr got mad at the nurse and told her to let her actual mommy console her. I dont think the nurse was too happy about this at all. She tried to put this heavy thing on me and literally was in my face holding this thing up without even attempting to ask me to put it on. I grabbed it put it on and they quickly took two erays after she was starting to settle down. You could see the upsetment in the Dr's eyes as soon as the xrays showed up on the computer and he immediatly told me..."Let's go into the room and talk."

As soon as we got in the room he told both me and my husband that he did not see any change in the hip. As soon as it came out of the harness it popped upwards towards the stomach. Which meant it was not working after almost 8 weeks of her being in the harness. So the next thing he was going to do was surgery and that he would refer us to another dr there in the clinic to do that. I asked him if he could try the plastic harness that gives her frog legs to see if that would work. If we needed to take a more ivasive route. He said that he did not think it would work and that the only other option he saw us having would be surgery. And after that the spica cast. To leave her out of the harness for now. He showed us the xrays explained a little more and then set up the appointment for the surgery consultation in two months on April 25th. So here we are husband wants to go ahead and settle with the prognosis. I want to exhaust every option out there and get a second opinion before I let them cut into her. I dont think the dr exhausted every option out there before settling on surgery. He only tried the one thing which was the harness and said if that dont work then nothing will. Well heck we dont know that because he wasnt willing to try anything else.

So here we are at home baby girl was upset at first with the harness off. Surprising but i guess she liked the little coccoon of feeling compact or something. She still keeps her legs in the same position but is slowly letting them out. She had a hard time falling asleep and has been wiggling all over the place last night. Shes like a little ninja :ph34r: one minute in one spot the next after a bout of stretching and kicking and wiggling and moving shes like 2 feet from where she originally started. :wacko: This morning she seems to be handling it all better so i am going to call Shriner's today to see if I can set up the appointment without a referral to have her seen for a second opinion.

So thats pretty much it sorry for the play by play of the whole day.

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It is very stressful when your child is hurting and then stressed out, what an awful day! Try to keep in mind that the frustration you are going through now will lead to good things down the road. The first time you see your daughter take her first step or run across the yard you will remember why it is that things were difficult NOW. :huggy:

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Definitely get a second opinion. But I am wondering why her Dr. Won't try the less envasive splint treatment first. What's the harm, the surgery consult is still almost 2 months away.

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So sorry you are dealing with this for your little one - keep asking lots of questions, even if the doctors seem annoyed, don't stop until they have given you answers!

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