My daughter is 16 and has been fighting the aso titer for about 4 years now. We really just figured this out when we switched doctors. She had strep when younger was put on meds, went back to dr.and was told her aso was elevated but culture was neg. gave her a shot of pen. and we left it at that for the past two years we've have had a awlful time. She's been so sick and sore and just plain tired but didn't put it together with the aso. Went to new dr. in Aug. 07 and ask to have strep done cultures done and they were neg. Then i remembered what had happened when she was youger and ask them to check aso. count was 600 and something they couldn't believe it. Since then she has been on 4 different atibotics and that didn't work it was still rising on meds(went up to 800 on meds). next step take out toncils, did that the first week jan 08, started doing much better went back to school and everything, stopped meds 14 days after surgery cause her stomach was done and she was like a new person. But guess what 4 weeks ago saw it happening again, started slowly feeling bad. took her back to be retested and her count was back up to 714, since then she has progressivly gotten worse. she's seeing a rum. dr. next thurs. but we've seen him before and he tried to tell me that mabey she's depressed, she's at that age he said,(cause she's so tired and sore she sleeps all the time). How many time do we both have to tell them she's not!!!!!!!! She dosen't feel good people!!!! They even told me today not to take her to hospital(she can't hardly get out of bed when she does she feels like she's going to pass out and her muscle's are so sore) that they would just look at me like i was nuts. She's 16 for heaven sakes she's going to miss her last two years in high school and she really just wants to be able to go to school and feel normal like everybody else!!!!! She's being retested tomorow by her regular dr. and i can gaurentee its up even higher.Helppppppppp What else can i do to help her!
I feel so bad for you and daughter! Ours has had the same for about 4 years, now is 17 ...missed second half of 9th grade, was home schooled 10th grade, still being home schooled for 11th. Very frustrating when some days she is great and beautiful...then suddenly cannot get out of bed, odd pain-like sensations in arms, legs, now today in belly area, barely can open eyes... We've had one of the 10-12 specialists refuse to see her until she saw a shrink! Insulting, but I know he was protecting himself and saving time in case she was faking or depressed; results were that she was normal emotionally/mentally and not imagining pain and extreme fatigue...but a concern she may become depressed due to isolation from friends. We encourage her keeping in touch by telephone and computer and , when able, gets out to see friends or they visit.
High ASO found with first test around 2003 at 856 when she had strep so often...gosh, low compared to your thousand!!! but range is from 0 ( I think ) to 150!!! The primary physician has pretty much given up, although he supports visits to other specialists when we present fact-based information on something that should be considered for checking or testing. Last endocrinologist said, "...it's chronic fatigue syndrome! Live with it! I've got it, too and I live with it!" Yeah, well he made it through high school, college, med. school.. she doesn't have a life! Again, we rejoice when she is feeling well and is able to make it for an hour at the store and buys new clothes, visits friends who miss her, rides to the convenient store with her dad...
If you have problems with school and assignments/homework, teacher communication I have 4 years of experience ( and war stories ) that enabled me to be an advocate for her and willing to answer questions you or anyone may have regarding the obstacles your daughter may be hit with from your school and her rights as a disabled student.
Has she been given 504 status???
Hi - Just thought I'd add more info on what we found to work in the beginning...I noticed that my daughter would have a better day when she had steak or popcorn the day before. It took me a short while to find the link... I realized that the only things we use salt on is popcorn and steaks...mind you it is always IODIZED salt, also usually sea salt. This was mentioned to one of her many trips to doctors and I was commended by one doctor for being so smart to pick up on that. ( Well, hooray for me...so what does this mean??? ) Blood tests showed low thyroid, but a second test showed levels all normal...not a thyroid problem. It was then found that her blood pressure was low...blood volume was not correct...muscles, tissues, organs,etc., not getting correct amount of electrolytes and hydration, which can cause malfunctions. She increased her salt AND water intake. Literally, she would have a routine of licking a small pile of iodized salt off her palm and drink a glass of water with it every day. You should invest in a spignominnometer (sp?!) ... ya know, a little machine that automatically takes your blood pressure and pulse. We'd do checks before she rises in the morning, and different points throughout the day, also whenever she felt odd, foggy-brained, and even when she felt good, just for comparison. This was added in my record keeping along with what/when she ate/drank in case something worked or made her worse.
With your doctor(s) knowledge, try this out for one or two weeks and see if there is any difference. We did not know about the blood volume imbalance until the doctor referred her for a tilt-table-test. Took months to wait for the appointment; the doctor there was excited about how her volume changed within seconds with the tilting...now she is taking florinef which makes something do something ( !!! ) in her body and her blood pressure is higher so she can function. Before starting on this steroid, her BP was in the 80's to low 90's over low 50's. Now it is the 90's to low 100's over 60's. With that medication she could stop the excess salt intake, but continued drinking sufficient amounts of water daily. When she'd forget, her eyes would feel dry, she would get squinty and start slowing down, get tired...and sometimes fade out.
There is still no diagnosis. I do not accept chronic fatigue syndrome as a disease... it is a symptom! That's like telling some one that their problem is a bad limp. No, excuse me, but a bad limp is a symptom...is it a stubbed toe or a broken leg?!
Something else that keeps bothering me...after getting her tonsils out (July 2005)due to one of them bursting from coughing so hard, she had the chicken pox immunization a few weeks later ( Sept. ). Can varicella immunization screw up a kid if they are prone to rare bad physical consequences??? Things gradually went down hill and by March she missed most of 9th grade except for the last two or three periods of the class day, and eventually did not attend school the last couple months. That is when she was given the 504 Disabled status due to a friend telling me to request it. Even though it may be obvious that a student needs that, the school administration will not mention it...MONEY !!! Of course, as soon as I request she be given 504 status, they were willing to address her needs. They had to by law.
I keep hoping to see a message from you to hear how your daughter is doing.
Hope she is being optimistic in knowing that she is not the only one...
I just wanted to let you know that your daughter is not alone. I am now 26 years old but I started to have the same sympstoms of "sluggishness" as your daughter when I was about 16 or 17. I had a case of strep throat or tonsilitis every fall/winter of every year while I was in middle school and also through high school. I guess one of the strep infections was never properly treated because I found out when I was 22 that I had an elevated ASO count of over 400. My family physician gave me antibiotics that brought it down and figured that was the end of it but I've never felt right, always completely exhausted and it has just gotten worse over the years. All I can do is just sit around the house, I sleep twelve hours, and after 2 hours of being awake I'm exhausted again! I was just tested a few months ago and my ASO count is now over 800 and they gave me antibiotics once again, it brought it down but as soon as I was off of them it shot back up.
I was so glad to read your comment and to know that I'm not the only one going through this. I started to think that I was just lazy...I felt so terrible for the longest time! I've gone to three different rheumatologists and they've all said that I have fibromyalgia and depression and that that is what's causing my exhaustion but I just don't beleive it. I'm scheduling an appointment with an infectious disease specialist, hopefully they can find the problem. If so I will definately let you know. Good luck and God bless to both you and your daughter.
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