Help me please !

[Helpmyson78]

My son has had tics among every symptom of pandas for over 2 years

 

My son is almost 4, he has been sick with croup, flu, ear infections.... Lots of sickness

 

He tested positive for strep 4 weeks ago

 

He was on omnicef for 20 days

 

He was tested again tonight to see if he still had strep. It was negative.

 

I tried to hold it together after getting the results.

 

I thought if it was positive all my research and documentation would mean I was correct

 

I need hope.

 

has anyone gone thru this? Can kids with regular old tic disorders have flare ups of symtpoms like awful tics when they are sick ? He had a high fever and a slight cough that's why I brought him in, his appointment was for tomorrow but I brought him to urgent care to get tested tonight.

 

He saw Dr.Kaplan last week...... Mixed feelings about seeing him.

 

He gave us a referral to see a pandas doctor, and my sons primary is willing to treat my son for whatever it is... She is the one who gave us 20 days of omnicef.

 

Questions: what are the chances I will get a positive result on his culture?

 

3 days ago I noticed him changing at nighttime, he needed me with him for a long time, his motor and vocal tics were awful ...he was afraid to sleep. Prior to this it wasnt so severe. I'm noticing "flare ups" now that I know what to look for. it turns out 3 days ago I noticed him getting sick !! Now I know when he is sick his symptoms are horrible

 

My sons response to omnicef was on day 10-12 he had zero tics !!!!!! Prior and after that it was awful, horrible tics ...

 

All I know is something major is going on here... If you read the list of symptoms kids have with pandas it is my son. I just discovered pandas 4 weeks ago.

 

Can you tell I'm trying to hold onto hope here?

 

Thanks for any feedback.

Edited March 9, 2012 by Helpmyson78

[Tracie]

Find a PANDAS Doc.. and get the blood tests started

Dr.K has been ours for 3 years there is Dr.B and Dr T

Get the help you need with a Doc that knows what he is doing

 

Tracie

[patric]

Hi Helpmyson,

My heart goes out to you as I can hear the panic in your post. My sons tics also got much worse with illness. If you read "very worried" I posted our whole story. There is lots of hope and treatment, but I would get to a pandas doc. You mentioned a referral to a pandas doctor? I would see one recommended by the parents here. Also, you mentioned the strep test was negative? Was it a rapid? Those have always been wrong for us, and even when they culture it, it hasn't always been accurate. My son doesn't sit very still for the swab test.

Best of luck. My thoughts are with you. It can get better!

[Tracie]

OMG So sorry my computer just freeked out me.. anyway my DD has never tested + for strep throat but Dr K said that it probley started in her ears..she started at 4.. so dont think because the strep is - he don"t have PANDAS

Tracie

[Helpmyson78]

We haven't found one doctor here in minnesota, my sons pediatrician treated one girl with pandas. I feel blessed to even be able to talk about pandas with her. It was a rapid test, the culture results are tomorrow.

 

Dr.Gail Bernstein at the u of m is who Dr.Kaplan referred us to see.... Gotta research her next.

 

I am obviously going to demand blood tests....

 

My son is only 4 and pushes his head because he thinks it will make the tics go away. He pushes his forehead like a button to turn them off. He has a speech delay so he tried to talk to us about it.

 

His rapid test 4 weeks ago was positive and he had no symptoms ....

[Helpmyson78]

And with my husband laid off flying to see a pandas doctor isn't an option... I'm searching for miracles here...

[patric]

Hi again,

I agree with tracie. IMHO I would only go to one of the "fab four" (or five) pandas doctors listed on this forum as soon as possible. You can also email or call too a lot of times if traveling is an issue.

[Fixit]

I am sorry you are going through this.

there is always hope.

if you cant' get to one of the more known docs, maybe someone can pm you(private message) you a local doc.

There are also some DAN docs who treat pandas.

i don't know of any in minossota...there is a DAN we use in NJ and one in FL.

Some of the DANS also have access to ivig if it comes to that.

 

my ds12 got to the point where he would tic prior to ANY strep symptoms or cultures.

went to get swabbed and came up neg...then i went back a few days later forced the doc to swab again and he then came up pos.

i was very lucky during the early years, that ds would go into full remission on a standard course of either amox or azith.

 

as of the last couple of years, ds also flares with tooth loss. Spoke with my dan today and we discussed the amount of bacteria in the mouth and flares.

 

it may not be "strep" specifically and you may need to look for other triggers like mycoplasma pneumonia.

Read as much as you can here and get to a doc who will work with you as soon as you can find one.

when you get a doc they will probably also check for other things including vitamins and minerals and yeast.

 

you have found a great site with alot of helpful parents.

you and your family will be in my prayers tonight.

Edited March 9, 2012 by Fixit

[Helpmyson78]

Can Someone explain mycoplasma ?????!!!!!!

 

My sons breathing can be heard from the other room st times, and my daughter just had pneumonia out of nowhere...

 

What are the symtpoms.... That aren't classic symtptoms.???

 

I'm prepping for our appointment tomorrow, and it looks like ..according to my list there will be a lot of blood drawn !

[bulldog24]

your doc might be able to call a pandas doc and get a consult on what to do. ?It might cost

a few $$ but worth it.

 

PANDAS is a clinical diagnosis which means there is no test. My son first started with pandas when his sister was being treated for strep, he tested neg for strep.

[minimaxwell]

We got our ped to call in a Gap exception so our insur. company covered both Dr. t and Dr. K. Basically have to say there is no PANDAS specialist in our area to treat our child. We are lucky b/c we have United Health which is PANDAS friendly. Perhaps others can weigh in how to get these Dr's covered . Also, dr. T and Dr. K both do phone consults. I would start with dr. T.

[Dedee]

Only have a minute here. I understand you dont have much money. That is such a horrible situation. You dont have to fly. Awful to say but it may be a road trip for your family. We leave in the morning for a 13 hour drive to our specialist. Believe me, it's no fun to drive 13 hrs with 3 PANS kids in the car. But we do this about 3 times a year. It sucks...but it's what you have to do. Many out of state specialist will take your insurance. You just have to suffer the drive. You will do it for your child. You must.

 

Dedee

[dcmom]

I echo what Deedee says. This whole situation sucks, and without money it is much worse.

 

I have two pandas kids- diagnosed at age 5 and 8. They are (fingers crossed) doing really well now, living normal lives.

 

We have, for sure, been affected negatively by the cost of this illness. However, in retrospect, seeing how my kids were suffering, and how wonderful they are now- I would have sold my house and moved to an apartment. There is no price for your kid's sanity. (my kids were primarily ocd).

 

This is tough advice- but that is because we have all been there, and we know how important appropriate aggressive treatment is. And, frankly, seeing the right doc now, will end up saving a lot of money and heartache down the line.

 

Good luck.

 

PS: there are options such as- charitable organizations that will fly your child to appointments, and possibly ronald mcdonald houses near doctors where you can stay for free. You can figure this out.

[Tracie]

I wish we would win the lotto then we could help so many parents that need money for treatment!!!

we got lucky Blue cross blue sheild helped pay for our 2 IVIG's but that was it.. not the Doc

and the plane and hotel, rental car, food.. the list goes on and on

BUT I would do it again in a heart beat.

Will your Doc at least give him some abx's? try zithrmicien (sorry I can't spell it)

my DD has taken it everyday for almost 3 years sometimes we go down to everyother day like we are now

but if she has a flair up we go back to everyday.. I hope this summer we can go down to 3 days a week.

Hang in there.

[Helpmyson78]

My family is finally home from battle, I call it going to battle when we have to go to a doctor and talk about all of this

 

Mind you I just started researching and just found out about pandas 4 weeks ago.

 

Our doctor ran 10 blood tests, gave him 21 days of azithromycin !!!!!

 

Waiting for strep culture results.

 

We have a Gail Bernsten at the u of m who has treated pandas who we might see once we get all results in

 

Dr.Kaplan gave me her info ... Funny because he said they butt heads

 

Lyme, mycoplasma, ...you name it he's being tested for it

 

Let the journaling begin !!! He just started meds tonight