Need some advice from veterans

[Lori Ann]

Not getting anywhere with current neurologist lately. I have an appointment with Dr. L in October and ped gave us a three month rx for zith this week. DS has been raging lately, which I think is due to stopping abx a couple of weeks ago. He will become very defiant and violent, then turn around and hug me two seconds later, telling me that he loves me and asking if I know that he loves me. It is very strange. Here are my questions: I can have a phone consult with doctor K in Sept, which will be costly and not covered by insurance or should I wait for doctor L who will be covered by my insurance and is a little closer to home? Another question, how long does it take to come back from an exacerbation after the infection flares up? We have been on abx for three days now and I have not seen any changes. Things were tolerable over the summer while he was on abx, but school is supposed to start next week and I do not think it is going to happen. Any advice is greatly appreciated.

[P_Mom]

My vote....stick with Dr. Latimer......you don't need her AND dr. K. She is closer to home, in insurance, is JUST AS GOOD as Dr. K, but, she provides more options for your child.

[Lori Ann]

Thank you, thank you, thank you! You just helped me solve one more problem!

[EAMom]

What dose of Azith did you get?

 

I would also add in advil (at least short term).

[LNN]

We've had great success using CBT to manage rages/moods. It wasn't overnight, it took months of work (maturing helped too). But now, he catches his temper almost immediately and uses words, or an appropriate walk away for a few minutes. The change has been dramatic.

 

Re: antibiotics - in my son's experience, the antibiotics didn't play a role in ending symptoms (which seems to last 6-7 weeks if not ended sooner with prednisone). They ended the infection, they keep new infections away. But once the Pandas symptoms started, it took prednisone to end the episode, or simply time (6-7 weeks). Others may have a different experience.

 

Re: your upcoming appt - track things, take your top 5 symptoms and give them a numeric value every day (e.g. OCD was a 5 today, rages were a 7). Do this for the next month and then turn it into an excel chart that you can show Dr L. It's a quick way to convey a lot if information. If appropriate, take a video or bring samples of school work. The more concise you can be with words and the more specific you can be with examples, the more you'll get out of your appointment.

 

Finally, ditto EAMom's suggestion on advil - but for us, dosing had to be consistent, every 6 hours. Only doing it after things got rough didn't make nearly the same dent in symptoms. But do be careful - long term, it's bad for the liver.

[Kayanne]

My vote....stick with Dr. Latimer......you don't need her AND dr. K. She is closer to home, in insurance, is JUST AS GOOD as Dr. K, but, she provides more options for your child.

She is also more likely to give preventative antibiotics for a long time, not just 1 yr post IVIG. A phone consultation with Dr. K will only get you advice and a diagnosis, then you need to find a doctor to implement his instructions.

[P_Mom]

Ohhh yeah...that is right Karen.....good additions! I found that out the hard way!

[mom md]

Ditto on Dr. L. It took 4-5 days on 250mg of azith before I saw an improvement in both of my boys. My newly diagnosed son age 6 started it in June and we are keeping him on it until we see the neurologist in Sept. He still has some mild symptoms but the rages are gone.