[begaines]

For all of you out there that was here with the trouble I was having with our ped and telling me that she was faking it.

Well about 2 1/2 weeks ago we saw her new ped. we love her. On our first visit she spent about 1 1/2 hours with us. Abby still had an ear infection, also she had strep with her former ped. didn't check her for. Well, we go back yesterday and the strep is still there. So, now they started her on a new antibiotic. She has since been complaining with tummy pain. While doing her exan the dr. thinks that she felt something in her tummy and Abby came off of the table. So, now she wants to send her for a CT of her abdomen, she thinks she may have a tumor.

She is doing labs on Abby to see if she may have a condition called "Chorea". Has anyone ever heard of this and the treatments for it. I know that this can be caused by untreated strep. We are thinking that Abby could have possibly had it for over 5 weeks atleast. So, now I am furious more furious than before.

Any input would be greatly appreciated.

I love my Angel.

[cborsa7]

Beth,
Sorry I have no information on this, I'm sure you have tried googling this. Just wanted to say I hope everything works out and my prayers will be with you. So glad you switched doctors! Keep us posted.

[LucyLuMyLuv]

I am a Nurse Manager for a specialty pharmacy. We do home IV infusions of specialty medications used to treat chronic conditions. I actually have a patient with chorea! He receives infusions of immune globulin (IVIG) when he experiences an exacerbation in his shaking incidents -- about every 6 weeks. It is an annoyance, but very controllable.

[meg1]

can you descibe what her movements look like?

[sak9645]

Chorea is a neurological disease characterized by certain odd, involuntary movements of the arms and legs. One type of chorea used to be called "St. Vitus's dance" because the movements resembled dancing. Chorea is pretty uncommon in children, but can be a complication of rheumatic fever. Chorea is not curable, but can be controlled with medication.

While masses in the abdomen can be scary, sometimes what appears to be a mass may simply be stool. If your child has had a lot of problems with constipation, or with constipation alternating with diarrhea, fecal impaction could be an issue.

Sharon

[hipretty]

Is that the same thing as Huntington's Chorea?

[maak]

I am so happy you are getting somewhere with a new doc who is thinking of alternative diagnosis. I still think you may need to go to a nationally know pediatric neurology center which specializes in movement and/or seizure disorders if the new pediatrician doesnt come up with answers.
This kind of chorea is sometimes called Sydenham chorea. If it is related to a strep infection it usually gets better over weeks to a few months but can reoccur. There are many kinds of chorea. Chorea just describes a type of movement that is rapid, complex, involuntary, and jerky. Huntingtons is one type of chorea but I havent heard of it manifesting in such a young child and it usually doesnt come and go.
Good luck, she lucky you are being so persistant and trying to the absolute best of her.

[begaines]

Describing her shakes: well usually you can't see it but when she tells you, you can feel her little body trembling. The other night she was using the potty during a spell and you could see her little legs shaking. It is like shivers like when you are cold but it apprears to be harder.

She still currently has strep. So, we do know that she has had it for atleast 3 weeks. Geez...poor baby.

The spot in her tummy...well Abby has had some deals with constipation. During her exam the Ped. said that she felt poop but the thing she felt was on the opposite side. It hurt Abby really bad when she pressed down on that spot.

Speaking of Neurologist we have already seen a neuro dr. they were part of Scottish Rite hospital so a very well know office. Her new ped. is trying to get some leads on this she said if she finds out pretty much that this is what is wrong then she was going to send us back but she needs some leads to go on. She is suggesting a neuro dr. that specializes in movement disorders as well.
From what I understood Chorea is cureable. Is it/

[meg1]

There are a number of different underlying reasons for movement problems - Chorea may go completely awat but reoccur when the child has another infection.

Does her eyes move at all? Are her movement sort of jerky that she can't control?

Just thinking

[begaines]

Originally Posted by meg1

There are a number of different underlying reasons for movement problems - Chorea may go completely awat but reoccur when the child has another infection.

Does her eyes move at all? Are her movement sort of jerky that she can't control?

Just thinking

Her eyes don't jerk they become weak looking like she is really tired or when a child just can't stay awake any longer. But, other than that her eyes are normal.

This has been going on for over a year now. So, I don't know if this is what is going on or not. When they first started it lasted for 2 weeks on and off then went away for about 6 months. Then, they returned and they seem to be more and more frequent. I am just ready to get the results of the blood work and get the CT completed. She can't control her movements. I can feel them when I am holding her. It is more like she has the shivers but a good bit harder.


Right now I am really concerned and worried about her tummy pains that she is having. If you hold her a certain way she tells you that it hurts. When she bends down to pull her pants up it hurts also.

[KMatthews]

I don't have any suggestions BUT I did want to say how sorry I am your little princess is going through all of this. I hope you get some answers soon and she is feeling better!!

[nurse_reedle]

I am glad you are on the path to answers, from the sounds of things. I hope you get answers quickly and that it is all mild and treatable.

[shelbydog]

Originally Posted by maak

I am so happy you are getting somewhere with a new doc who is thinking of alternative diagnosis. I still think you may need to go to a nationally know pediatric neurology center which specializes in movement and/or seizure disorders if the new pediatrician doesnt come up with answers.

Johns Hopkins in D.C. is excellent for movement disorders. We saw the head of their dept. Dr. Harvey Singer - but we are lucky to be only 25 miles away....Chorea was something we investigated when my son had his movements (which were later diagnosed as Stereotypies) I'm sorry to hear she is sick and certainly send best wishes. I am glad you found what sounds like a fabulous pediatrician!!