New to PANDAS PLEASE Advise us!

[sleeplessinVA]

I am so glad that I found this site, it is exactly what I have been praying to find, why didn't I find it earlier!? My DS10 just onset what I think is PANDAS about a month ago with a strep infection. He went from typically sweet, happy, healthy, doing well in school and sports to a changed boy in a matter of a few weeks. About a week or two before we had the positive strep test, he started having micriopsia/macropsia, night terrors, repetitive nonsense speech while "awake" at night - horrible nights. then with the fever, he started having hallucinations and urcontrolled body movements, I can totally relate to the mom who saidvitvwas like the exorcist. I also lost 10 pounds and many nights of sleep. Primary care doc said that it was just night terrors and gave us a 10 day antibiotic treatment. Everything improved until the 10 day course ended. Then the tics started in- eyes, eyebrows, nose, noises with lips, milking hands and hitting his torso w his elbows over and over. Plus, he seemed depressed nd not at all himself. Got the flu, had night terrors again and now, he is recovered from flu, and seems to be in good spirits, but the tics are here to stay it seems, they are not getting better.

 

I have an appointment with Latimer for Late August, but I feel so helpless until then. We made an appointment with Dr. Azam Baig in MD for this week. Has anyone seen him for Pandas?

 

Where do I go from here?

 

What should I expect from the first appointment? Does my son need to be on prophylactic antibiotics? Can I still send him to school, I am terrified of another infection. I just feel like crying my eyes out!

 

Thank you for bearing with another case, I'll take any advice that you have for a newbie mom.

[PowPow]

Never heard of Dr Baig, is he is southern MD?

There are lots of Virginia Parents here!

You are in good shape to see Dr L- though i know it is forever. She WILL help you.

Call her office and tell them you will come for a cancellation, they do keep a list and will call if they get one, since you are so close (relative to some of her patients!)

 

Now you can be writing a timeline (keeping track of up s and downs), videoing any movements or behaviors you can. Also, have you tried to dose him with Advil a few days, some find that helps.

Try to get more antibiotics-- have you gone back for a strep recheck? It could be positive, still!

 

Can you print this out and take to your ped?

IOCDF PANDAS

 

It is written for a clinician and it gives some guidelines.

 

Many kids are on prophylactic antibiotics for these reasons: 1. prevent strep & 2. they are properties that help with the inflammation that most likely causes all this madness.

 

For you: try to sleep! You need to be in top notch shape to deal with this. easier said then done , I know. I too had an exorcist kid (also at age 10- she is 14 now)

 

Another thing to consider (depending where you live) there is a PANDAS support group meeting in Rockville in a few weeks (previously they have met in Fairfax County and there are a few people who meet in the Potomac Mills area. They are taking about insurance stuff next time, but it might help you to get in a room of parents who have been there or are still there.

You will find lots of VA/MD parents here, sadly. But at least we all have each other!

[DeterminedMomVA]

You may be able to get in to see the doctors at NIMH, if you're willing to consider the clinical trial. You should call to see if he's eligible.

 

http://intramural.nimh.nih.gov/pdn/web.htm

http://clinicaltrials.gov/ct2/show/NCT01281969

 

I also agree with printing the info from the link PowPow posted and taking that to your ped.

 

We're in NoVa and just got in to see Dr. L this week after a several month wait. She was great, but if we had thought we qualified for the clinical trial, we would have called them and would have been seen a lot sooner. (My DS had just had a change in dosage of psych meds and didn't qualify for that reason, along with possibly a few others.)

 

Hang in there. Believe me, I know how incredibly stressful it all is. Take care of yourself; it will help you cope.

[PowPow]

YES!!!

the study, why didn't I think of that???

Listen to Determinedmom (she should be called smartmom, too!),

contact them about the study!

[Fixit]

I am so glad that I found this site, it is exactly what I have been praying to find, why didn't I find it earlier!? My DS10 just onset what I think is PANDAS about a month ago with a strep infection. He went from typically sweet, happy, healthy, doing well in school and sports to a changed boy in a matter of a few weeks. About a week or two before we had the positive strep test, he started having micriopsia/macropsia, night terrors, repetitive nonsense speech while "awake" at night - horrible nights. then with the fever, he started having hallucinations and urcontrolled body movements, I can totally relate to the mom who saidvitvwas like the exorcist. I also lost 10 pounds and many nights of sleep. Primary care doc said that it was just night terrors and gave us a 10 day antibiotic treatment. Everything improved until the 10 day course ended. Then the tics started in- eyes, eyebrows, nose, noises with lips, milking hands and hitting his torso w his elbows over and over. Plus, he seemed depressed nd not at all himself. Got the flu, had night terrors again and now, he is recovered from flu, and seems to be in good spirits, but the tics are here to stay it seems, they are not getting better.

 

I have an appointment with Latimer for Late August, but I feel so helpless until then. We made an appointment with Dr. Azam Baig in MD for this week. Has anyone seen him for Pandas?

 

Where do I go from here?

 

What should I expect from the first appointment? Does my son need to be on prophylactic antibiotics? Can I still send him to school, I am terrified of another infection. I just feel like crying my eyes out!

 

Thank you for bearing with another case, I'll take any advice that you have for a newbie mom.

 

Scott Smith is a PA in NJ who you can probabely see sooner, till you get to see Dr L.

[bulldog24]

Please call the study. Its the best thing I ever did. They will get you in fast. If you have qs pm me.

 

It doesnt cost a penny to go. Its worth the call.

[bulldog24]

Also want to make it clear that you dont dignosis to Qualify. They can diagnose when you get there. My son wasnt diagnosed till He got there

[bulldog24]

Also want to make it clear that you dont dignosis to Qualify. They can diagnose when you get there. My son wasnt diagnosed till He got there

[browneyesmom]

Oh my... another one in Virginia! What is the situation that there are so many of us in this state?! Dr. L has told us there is a more virulent strain of strep in our area.

[browneyesmom]

... and I absolutely agree about checking on the clinical trial at NIMH!

 

Here's the link: http://clinicaltrials.gov/ct2/show/NCT01281969

[WorriedDADNMOM]

Sleepless, It can, does and ABSOLUTELY will get better. Try to remain calm. I would say, regular pedi's are resistant to treating anything like this. Don't waste too much time trying to convince them. I have burnt some bridges trying to convince them. Not worth the headache. Will your pedi try Azythromycin??? I would start here with getting at least a 10 day course of Azith, WITH Probiotics and start using any children's Ibuprofen until you can get to a DAN or Integrative Ped. When you go to them-----It needs to be a comprehensive overview of your ds's health.

 

I would go to a DAN doc or Integrative Ped as soon as you can. We are on a good path right now. DD is 8 in a week or so and our situation(s) sounds exactly like your situation. We caught it early, like you I think, and we are about 14 months in. If you need anything, PM me and we can talk more specifics regarding experience and treatments. There are people here to help. Your in the right place. Go with your gut and be your kids best advocate!!!Best of luck and stay encouraged!!!!

[HT's Mom]

I'll just repeat what the others have said - don't panic, although it is easy to! We have all been where you are now, but there is definite hope and you don't have to wait until August. Get in the study if possible. If for some reason he doesn't qualify, and your local doctor won't prescribe longer antibiotics some of the other PANDAS docs will do a phone consult with you and get you started on the right course of treatment until you see Dr. L. Where are you located? Sounds like northern VA, I'm in charlottesville, so if you are anywhere near, I'm happy to help. Hang in there - your son sounds exactly like mine and so many others at a similar age, and mine is now a happy healthy 90% ok 17 yr old.

[sleeplessinVA]

I can't tell you all how comforting it is to have your ear and your informed advice. Thank you so much for taking the time to reply and connect. I was able to get in to see Dr. Baig today in I found him on Pandasnetwork.org. He has an office in Dunkirk, MD. (Yes, I am in NoVa). I brought the NIH printout that you all recommended, it was very helpful. Again, thank you for that great tip. Dr. B. gave us a prescription for 21 days of cephalexin - 5 ml 2x daily, and orapred - 15mg 2x day for 5 days. I am new to these medications and to be honest, they sccare me just because I know nothing about them. We also had blood work done.

 

What are your opinions of this course of treatment and next steps? Did I do the right thing?

 

I am exhausted tonight, but tomorrow, I will continue to look into the NIH study and to research these meds.

 

Again, I greatly appreciate your feedback, support and advice. Huge thank you.

[DeterminedMomVA]

On my phone, so I'll keep it short. It's the right treatment, IMO, or at least a good start. If you've started the steroids, though, I think it will make you ineligible for the NIH study, so if you're seriously going to look into that study hold off on the steroids. Also, we got approval from our childs psychiatrist before starting the steroids that dr b in ct had prescribed for my son...they can cause rages and other problems in kids who don't have pandas, but instead have other mental health disorders not due to inflammation (such as true bipolar).

[Lor]

I second DeterminedMom regarding the steroids.

 

I spoke with many LLMD's in the past and they all said "never use steroids unless it's to save your life". They said that 'if you have an active infection and take steroids the steroids allow the bacteria to take over and prevent the body from fighting.'

 

If you're considering the study @ NIH, call and talk with Dr. G regarding any medications that might exclude your DS. He can also email you the 39 page protocol. I carry a copy with me to all doctors appts. He has been very patient and helpful in talking with any of the pediatricians that I have asked him to call.

 

I am taking my DS to the NIH in 2 weeks (sooner than I could get into see some neurologists and/or pediatricians!) and I just started conversation with them the end of March. They were going to get us on the 16th, but we couldn't go. (My DS developed sudden-onset OCD Feb 10th, and it exploded on March 23rd.) Luckily for us the neurologist in SW Florida that I was able to get a cancellation appointment with, was knowledgable about PANDAS and the study!

 

 

Good luck to you and your DS. Hugs.