Newbie with a couple of questions

[Pandamom777]

My first question is if anyone's child experiences a change in severity of symptoms during the day. My daughter is always worse in the morning. 3:00 seems to be the time when she usually starts to get more calm, and she is almost always doing better in the evening.

 

My second question has to do with success with treatments. The journal articles I've been reading talk about a great reduction in symptoms after 14 days or so on antibiotics. Then they don't talk much about long-term prognosis or treatment. I see on the site that many kids are on antibiotics for extended periods of time, so I'm a bit confused. Are there some kids that respond quickly and do not need to continue antibiotics for a long time? Are IVIG treatments, antibiotics or plasma treatments or a combo showing the most promise?

 

My last questions has to do with finding a doc to help. Do most of you find best success with working with someone that is very knowledgable about PANDAS, or can a doc that is willing to help be as useful? From the journal articles I've been reading, it seems that there are so many different and conflicting diagnosic tests and treatments, including dosages.

 

Thank you for helping me understand this further.

 

Sharon

[thereishope]

Welcome.

 

Most of the kids on here stay on long term antibiotics to try to prevent future strep infections. This would be prohylactic antibiotics. Prophylatic abs are also used with patients who have Rheumatic Fever.

 

As for how long does it take to see improvement form antibiotics...there's no real cut and dry answer. Some see immediate, some it takes a month to see improvement. It can also get difficult because one has to find the right antibiotic for their child. It ends up being some trial and error.

 

One also has to remember that you may start to see improvement within that month. It doesn't mean your child will back to their baseline by then. Recovery can take awhile.

 

About seeing one of doctors that is often listed on here. Well, if you have a "difficult" case, yes, it's in your child's best interest to see one of them. Otherwise, if you have a local doctor that truly is willing to listen to you, work with you with info you provide, and even be willing to take info from the experts via something like a phone consult, I would say you can try staying local. But when you reach road blocks and improvement ceases or doesn't begin, you will hopefully be able to travel. I know some will say to automatically go Dr K, DR L and Dr T , but I know that isn't possible for everyone.

[Suzan]

My first question is if anyone's child experiences a change in severity of symptoms during the day. My daughter is always worse in the morning. 3:00 seems to be the time when she usually starts to get more calm, and she is almost always doing better in the evening.

 

My second question has to do with success with treatments. The journal articles I've been reading talk about a great reduction in symptoms after 14 days or so on antibiotics. Then they don't talk much about long-term prognosis or treatment. I see on the site that many kids are on antibiotics for extended periods of time, so I'm a bit confused. Are there some kids that respond quickly and do not need to continue antibiotics for a long time? Are IVIG treatments, antibiotics or plasma treatments or a combo showing the most promise?

 

My last questions has to do with finding a doc to help. Do most of you find best success with working with someone that is very knowledgable about PANDAS, or can a doc that is willing to help be as useful? From the journal articles I've been reading, it seems that there are so many different and conflicting diagnosic tests and treatments, including dosages.

 

Thank you for helping me understand this further.

 

Sharon

 

Hi Sharon, I have 2 girls with pandas. My 7 yr old does not seem to have any time of day that is better or worse but my 8 yr old is worse in the morning (before school) and especially the evenings. The evenings is usually when she would get her aches and pains and feeling bad and her little demons would come out.

 

We did see improvement within 5-10 days on our original antibiotic dose. But it didn't last longer than a few months. We've had great success on abx once we got to a high enough dose. But they seem to be dependent on them because once we try to reduce the dose, they start to fail again. Maybe due to hidden strep?? We just don't know yet. With my dd8 we are learning that her allergies are causing trouble and making things worse so I hope that once we get her allergies under control, maybe she can maintain on a lower dose.

 

I have found a Dan! doctor, immunologist and ped. neurologist here in my town and traveled to see Dr. T and I find that working with all as a team is working for us. I feel fortunate to have been able to follow in some others footsteps here in town and also kept searching until we found these doctors to help us.

 

Good luck to you!!

 

Susan