Dedee

I think in the grand scheme of things, it really is petty. My son's hand writing is horrible and has never gotten better after his biggest flair. Finally one of his teachers told me to stop worring about it and leave him alone. He is good in everything else. That was years ago. As my son tells me all the time....College is about computers! 2 words for your daughter.....Spell check!

I agree with all the above. I can also sympathize with what you are going through. The best thing we ever did was to teach my daughter to take pills when she was 7. We used skittles and I was so shocked at how quickly she learned. It's something we struggle with everyday. Some days are less of a struggle than others. We make it non-negotiable also. No medicine, no play or TV or games. Sometimes it gets really ugly. When things are good, she can take them in no time, other times it may take 30 minutes or longer to get it all down. It's my worst nightmare. Wish I could say something magical to help. Just know you aren't alone. Keep up the good work! Dedee

You need to see a PANDAS specialist as soon as possible. Most likely this will involve travel but it will be worth it in the long run. Make your appointment now because it may take a few months to get in. Local physicians and pediatricians are not going to be able to get you through this. I know it seems like a lot of trouble but it really is necessary. Most folks here travel for their specialist. If you live close to one of the good ones you are fortunate. In the mean time you can try ibuprofen for inflamation and keep the antibiotics going. Dedee

I am so sorry for your current state of confusion. There is nothing worse than when you start to doubt your own decesion making. I have been there, it's not pretty. Just remember you have been making good solid decisions for your son up until now and you will continue to do the right thing moving forward. This is a very confusing presentation I will admit. His regression with combo antibiotics is very similiar to what my daughter is going through also. We are just now seeing a little break in her flair since I increased the amount of the motrin I was giving (based on Dr. T's recommendation from his broadcast). I'm not sure whether you are dealing with lyme or not. But for certain, you weren't making huge headway with the previous treatment. I like the idea of an LLMD, but that is easy to say when it's not me paying for it. I would love to hear (see) the results of the test for myself too. Maybe you could make an appointment and see how things go up until then. I imagine you would be waiting a while to get in with someone. Do your detoxing as much as you can and don't underestimate the benefit of ibuprofen. We actually started camels milk yesterday based on the post from this board. Desperate times call for desperate measures. I'll let you know how it goes. Hang in there. You are an awesome Mother! Dedee

That is really great news to hear! Thank you for sharing. Gives me hope. I look forward to the day when I don't have to coax my daughter out of her locked room to get her in the car to go to the doctor! Dedee

We had that experience with our oldest son several years ago. That was when not much was known about PANDAS. They gave antibiotics for the initial infection then Zoloft for the anxiety and OCD symptoms. We were lucky that it was helpful for him for several years until he had a series of infections that triggered things again. I say if it is working for you, don't rock the boat. Best of luck. Dedee

I am so sorry for what you are going through. My lowest point was when we were fighting insurance, trying to get them to pay for IVIG for my daughter. For us, it never happened and we ended up paying out of pocket, but many do end up winning the fight. It's a terrible feeling to think your childs fate lies in the hands of someone on the other end of the phone who is only looking at financials. I can't help but have a deep resentment for all insurance companies. They have denied so much for my kids. It's very unfair, what you are going through. Everything all at once too. I remember last year there were many days when it took both my husband and myself to get my daughter to school. One of us would drive and the other had to hold her down in the back to keep her from attacking the person driving or to keep her from jumping out. Once at school, the principal would come outside (we called her first to warn her), and she took her kicking and screaming into school while we drove away. It was so terrible. The principal would always call us after she got calmed down. They would take her into the nurses station and keep her there until she was calmed down then take her to her class room. We were very fortunate to have a very understanding principal who was also very strong and could hold her during her fits. We found it was very important not to give in to her school refusal, no matter what. She would go through these episodes off and on through the school year. Usually it only took about twice of us dragging her (literally)into school before she would start going by herself again. All that to say I know where you are and how painful this time is. I wish there was something magical I could say or advice I could give to help your through. It is very much one day to the next and I promise it will get better. Please take care of yourself as much as you can. All my best... Dedee