Discussions By Condition: I cannot get a diagnosis.

2 boys have high ASO titers and other symptoms........no answers

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: mommyof2boys
  • August 25, 2011
  • 02:24 AM

ill try to explain with the short story, sorry if it gets long. I have 7 and 5 year old boys. In January 2011 my 7 year old was diagnosed with strep induced arthritis. He had excruciating knee pain, and his dr did some labs. At first they thought it was Rheumatic fever, he was sent to a cardiologist and rheumatologist. His ASO titer came back at 648. His three doctors decided he has strep induced arthritis and started him on Bicillin injections. Now my 5 year old started limping on the 3rd of August and complaining of his leg feeling "funny" and tickling him. As the day went on his limping got worse and he started having pain. That evening he was crying with pain so I took him to the er. They did x rays and said the suspected Legg Calve Perthes disease, and they wanted him to see a orthopedic specialist. I took him to his pediatrician the next morning and she did x rays and labs, and agreed with the er. We were referred to a specialist and had that appointment a week later. They put my son in a wheelchair on the 4th. The orthopedic dr said he wasn't sure what was going on, because all his x rays were normal. He tossed around septic hip, reactive arthritis, and Legg Calve Perthes. My son was in the hospital for about 3 days at the end of July. His ASO titer came back at 631. The specialist told me it did not mean anything. He said my son could go back to his regular routine. My son was on his feet doing his normal stuff for 3 days and started limping and having pain again. I took him back to the specialist and they did x rays again and still didn't seen anything. He said he wanted to do an MRI in the next few days. That was last Friday and we still have not had an MRI! I have called his office several times since Monday and they tell me they are working on it or don't return my calls. I took my son back to his pediatrician yesterday to see if she could order one. They tried, but our ins said there was already one ordered and won't pay for another one. She agrees with me that there is a correlation with both boys having high ASO titers and leg pain and they both had their tonsils removed and a month later these problems started. She said she would like for us to see genetics as well. She repeated my youngest son's ASO yesterday and it has gone up to 665! I am so frustrated and don't know what to do. The "specialist" won't listen to me at all. I know there is something that is affecting both boys, and I don't know if my oldest has been diagnosed correctly either. I just find it strange that they both have some of the same symptoms, but yet different ones at the same time and no one seems to think there is any thing there. I tried to get my youngest son in with my oldest son's rheumatologist, but was told as of Sept. 1st he will be going to Columbia University in New York and the soonest they can get him in with another dr is Sept 29th! Until then they want him in the wheelchair. He is a typical rambunctious 5 year old and hates being in the chair! He cries all the time and doesn't want to go to school any more (he just started last week). He thinks the dr will never let him out. My husband and I try to talk to him and explain what is going on, but it does not help. I just don't know what to do! I want answers and feel like I am just being ignored.

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2 Replies:

  • What is the diagnosis now ? My son has a similar history and orthopedic says he does not know what he is treating for
    srvaidyan 1 Replies Flag this Response
  • I found your forum this morning when i did a google search on 5 year old with high strep teters and leg pain. My daughter is 5, she has been having severe leg pain (right above knee) same place everytime for several years now. She has been hospitalized numerous times also for high fever with no other symptoms. She has been through physical therapy as doctors said that should help. Well it didnt. Orthopedic doctor checked her and did bone scan & x-ray with all normal results, said he didnt know what he was treating her for. Growing pains have been eliminated. He sent her to a pediatric rheumatologist, she just did lots of blood work on her. Her CRP levels were elevated, white cells in urine ( no uti ), and her strep titers were high "highest she has seen". She has been staying sick yet her immune system seems to be fine. I am lost and want answers. When the dr. called to give me the results from all of the blood work she said she was scheduling her a eco of her heart, with titers that high is was a must. It is a 3 hour drive for us to go to the pediatric rheumatologist, since we were just there last week she said she would be scheduling the eco at the local hospital here and would be in contact with her pediatrician to let them know what was going on. I dont know what to do anymore she seems to be in pain more often and the pain gets worse as time goes on. She walks funny sometimes and her leg gives out on her. If we are in the car for a long period of time you can bet we will have a rough night. I am curious what you found out about your two boys???? Or if anybody else has any insite to this.I am starting to think the dr's dont have a clue. I cant sit back and watch my little girl suffer and stay sick. If you have any suggestions please let me know.
    RGPMOM 1 Replies
    • December 9, 2012
    • 06:50 PM
    • 0
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