tired mom

A few months ago my daughter had a white film on her tongue and she was told it was geographic tongue and it was nothing she had to treat. It did go away but came back about a week later and then gone again.

Mine is on generic xr and no bothersome side effects. She takes 1000mg at dinnertime and we are now on day 12.

Well we are on day 10 today and I just went to the pharmacy for a refill. I was a little nervous in the beginning because we had a little episode on day 5 but after that (I don't want to jinx myself) I have noticed a change. Things are much calmer now. My daughter also admitted to feeling better and it has helped her anxiety. Hope it works for your son. Good Luck!

I am a little confused here. If you signed him in can't you sign him out. What are they actually doing for him. Taking away his free time as a punishment is insane. If consequences worked for for these kids don't you think we as parents would do that. The mentality of some of the professionals in the psychological field angers me. These children cannot stop the rages and they should not be felt to feel that they have been bad. Do they think he acts this way because he wants to? Sounds to me like someone in that hospital needs a slap in the head.

Hope your day got better. My daughter started on the biaxin and there is definite improvement. Hang in there, even though there is no beach you can still chill awhile and enjoy that margarita!!God knows we all need a break sometimes. Talk to you soon and good luck with pet scan. Michelle

You mentioned that your son had broken out in a rash. Could it have been hives?? This past fall I noticed a change in my daughters symptoms and she was breaking out in hives. The doctor ordered bloodwork and she came back positive for mycroplasma p. If he was not checked yet have them do the bloodwork. Good Luck and God Bless!!!!

I am so happy for you that he is doing good and will truly celebrate the day I can say the same!!! It is so hard to think of him being in there, scared and lonely. I wanted to just go ama so bad with him last night, and regret not doing it . Its a horrible thing, when you are in the midst of it, you feel like there are just no options, its what you have to do for him to be safe and then as soon as he is there, I think no why did we bring him in, we can do this at home. UGh, its enough to make you feel crazy. I suppose they deal with some parents that drop their kid there and think of it as a break, but I'm not that parent, I don't think any of us on here are, so when I can't even get the dr from there let me know how he is doing, what the plan is, or anything -but yet don't want to burn bridges with someone that can help him. I am just so frustrated. Am waiting to here back from the bank today and that stress is killing us too, but nothing compared to what he is going through I'm sure.

your ideas ARE my reality

I think you should mention it. I have a niece who at four years old could not walk for a couple days and had terrible joint pain. I know my brother took her to Childrens Hospital in Philadelphia and they said it was some type of rheumatoid arthritis associated with an untreated strep infection. She has been fine now.

I wish it would be over for you soon too. My daughter is 17 and I can tell you it got a little easier between 15 and 16 but she got hit with mycroplasma p this fall and seems to have relapsed quite a bit.

So I just got back from a lab where I was taking my daughter to have bloodwork done. I had gone to see Dr. T last weekend and he ordered a whole panel of bloodwork. Now here is the part where I need that rubber wall to bang my head against, The lab tech was not able to draw the blood because she was unaware of some of the tests (for example, c50, Dnase B and about 3 other ones). She did not know what kind of vials were needed and so forth. Knowing how hard it is to take my daughter for bloodwork I suggested she draw the blood for all the other orders, she would not. My daughter gets very agitated when she sees ocd written on her charts and becomes very adament she only has aniexty. That being said we leave the lab and the women hands the papers for the bloodwork to my daughter and guess what the diagnosis is on the paper? OCD!!! She comes home and crosses out ocd and writes anxiety instead. I guess I will have to get her Dr to rewrite the orders because I don't know if insurance will cover bloodwork done for anxiety. Sorry for venting sometimes I just get so frusterated. Anyway I know alot of you have seen Dr. T and probably had similiar bloodwork ordered. Did you have to go anywhere special???? Thanks.

I tried many diffirent SSRI'S with my daughter and I also have seen her symptoms worsen on then. When she was in her worst state with ocd I can say honestly say no psyc meds. worked. She was on Lexapro for about 2 years and recently stopped taking it. There has been no change.

I for one live in pa. so we went to see Dr. T this past weekend. I think most do phone consultations from what I have heard.

My daughter had this as her ringtone for awhile. I cannot even begin to imagine how these kids feel on the inside. We all talk about how scared and frightened we feel but few of these kid express how they feel.

I would say no since we had one done 4 years ago and it showed nothing. If you dr. feels it is necessary I woud push for a pet-scan instead it shows alot more.

I may be wrong but I can remember when I started researching Pandas I read that a percentage of children will outgrow this disorder by late adolescense. So I must ask was this 19 year old boy cured or did he simply outgrow it????????

I also was told my daughter was allergic to ammoxicilin due to a rash she had broken out with while on it. That was when when she was about 2 years old. I tried it again when she was in the hospital after having her tonsils removed. She was not allergic.

For those who do not know what this stands for ...... F*##^% Up Beyond All Recognition I like it. Next time we are in an episode I'll simply tell my daughter she is fubared again.

ditto

Stay strong. Tomorrow we will find all the answers. To everyone reading this is my sister. Our lives have been shattered like all of yours have. The rage is the most difficult thing to handle. I HATE THIS AUTOIMMUNE DISORDER!!!!!!!!!!!!!!!!!!!!!!!

Thank you to all of you who helped me with your encouraging and informative posts. I have resigned myself to never submit my daughter nor myself to a doctor with tunnel vision and one who is unable to think outside the box. This is a true story that happened many years ago. I had a brother who was 8 at the time and complained of leg pain and fatique and was told it was probably growing pains. A short time later he ended up in the hospital with a diagnosis of Rhematic fever. Although his blood work indicated nothing more serious his doctor had a gut feeling it was not Rhematic fever and asked my parents permission to do a spinal tap. His intuition had been correct. My brother had acute mylonginis leukemia. This is a rare form of leukemia in children. At that time my parents were instucted to go to Childrens hospital in Philadelphia. Upon arrival the doctors at chops said lets see what those local yolkos are calling leukemia. Again blood work was done No leukemic cells. Spinal tap confirms diagnosis. My point being that this illness is always present in the blood and in this case it was not. My brother was named the miracle child at chops because he was able to fight this cancer for 8 years. Did the cancer ever show up in his bloodwork????? The answer is yes 8 years later 2 weeks before he became an angel. So to me neg. strep swabs and normal titers does not rule out anything!!!!!!!!!

zithro to treat the mycroplasma then 1000mg of augmentin for 20 days. whats odd is when she got sick she was tested for strep(neg) h1n1(neg)and givin a cough med prescription. i returned to dr. a few days later because she was still real sick and that is when she was put on zithromx. Two weeks later she was breaking out in hives and a blood test should positive for mycroplasma p. I was told she had already been treated for it with the zithro but I insisted on the augmentin because she was vey symptomatic. Her rages and ocd have definately increased sometimes real scary...

it sounds like your doing a great job. Maybe keep a daily journal that may help down the line. About your question about the aso titers I can only tell you I recently read that 37% of children will not produce either elevated ASO or anti-Dnase B levels in response to a streptococcal infection.

This makes me mad too. But, if this physician has her own practice, she bills though her own business. I will ask some of my peeps in the business side of my clinic how this can be challenged...if a patient does not pay their bill, they can be sent to collections... stupid me paid already