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REally overwhelmed today..


Baylor
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My son who is now 7 had recurring strep through the winter... 3 times. First 2 times treated with Amoxicillin and then the last time he had an allergic reaction and was treated with something with a c.. Not ceclor but it was a liquid oral and smelled and tasted like garbage. After ward the dr did another swab to see if it was resolved but I never heard back and figured it was gone and solved..

 

So that was about 3 months ago..

 

Fast forward to recently when I am noticing ticks and outbursts that are not characteristic for him. He has had little things but I chalked it up to maybe some OCD because he dad has that.. With some ticks... But this is different. Last night while we were at the beach He started clicking his jaw tight.. opening and shutting it pushing it forward.. Then he had a melt down because his ice cream dripped.. Not like he normally would. He melted down.. When it was all over, He said to me.. " Why did I scream at you like that and cry?" And I almost fell apart. It took all I had to keep it together..

 

The last time he had strep and we ended up in the ER because of the allergic reaction to Amoxicillin, I asked the Ped ER doc and she told me that most Peds don't think it even exists and not to worry. I realized I was not going to get an information from her but it did not make me not be concerned..

 

 

I am in suburbs of Philadelphia and read in another thread while I was waiting to be registered completely about dr Elia at CHOP.

 

I am not sure the reaction I am going to get from his Ped. He is pretty good about my concerns and thoughts but I have brought this up before and he kind of side stepped it. I am calling when I get home from vacation to have an appointment with him and see what he says.

 

Any advice, information, proactive steps, dietary suggestions greatly appreciated.. From what I have read the earlier something is done the better.

 

I am really trying to hold it together as I am not sure what this means in totality. It feels completely overwhelming this morning..

 

He is a bright sensitive child who is my heart...

 

Thank you. and Thanks to whoever started this board.. There is a little comfort knowing there is this resource and people who understand.

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Baylor-

Take a deep breath and relax for a minute because you are in the right place. I am sorry you are going through this. I don't know if your son has PANDAS but you certainly have every reason to suspect he does and you have the right to have him thoroughly evaluated by someone who is knowledgable in the disorder.

 

The pinned threads at the top of the forum can be a great help when you are beginning on the PANDAS journey- and this includes some information on doctors who have been helpful. We have several members in the Philadelphia area and hopefully they will either respond to this thread or send you a PM. When you receive a private message you will notice a number in the upper right corner near your username. You click on the arrow near your username to access your messages.

 

We generally do not talk about doctors by name in the public part of the forum, but folks will PM you with personal information about different docs.

 

The antibiotic your son was on that smelled bad could have been clindamycin (cleosin). It smells really horrid in the liquid form.

 

Best wishes to you as you navigate this path. We are all in this together.

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I am so sorry that you have to go through this! Your post actually brought tears to my eyes. My son started with PANDAS in Feb. of this year. He is also 7.

I am assuming the last med. was Clindamycin. It's super gross tasting.

 

I would definatly start keeping good track of all of the behaviors/tics etc. In the beginning I bought a big daily planner and would write what was going on each day with each child (I have 2 w/PANDAS). But that helps because you can have it in hand and show the Dr. I would also chart the behaviors w/numbers. So if my daughter had an ouburst/rage, I could write that down, describe it, and then give it a 1-10 scale rating. That seemed to help a ton.

Also, put the meds. in there. That helped especially for us when trying to explain the rages to the Dr. I could specifically pinpoint when they would get better after abx.

So when they tried to tell me I was overreacting, or it was just a "fit", I could show them how the behavior improvment correlated with the timing of abx.

I have actually had a doctor tell me that my kids needed psychiatric help, and there was nothing else wrong....grrrrr.

We know our kids better that anyone, and also have the "mama gut instinct", so I would say trust your gut....especially on the behaviors.

 

Regarding your ped. that's tricky. Our ped. is actually the one that told me about the PANDAS, but said she will have to learn along the way with me because she's not familiar with it. She also has said that when she has called other specialists in the area to ask for help/opinions, that nobody really wants to touch it.

She did recommend an anti-inflamitory diet in the beginning, and when they are sick to cut down on the inflammation. So far it has seemed to help.

 

So we still see our ped. but have also had to seek out other PANDAS specialists. We consult with Dr. K in Chicago, and Dr. T in NJ (and we live outside of Chicago). They have been great especially with longer doses of abx to help clear infections. We weren't sure if strep was hiding somewhere, or just not being cleared and having it over and over.

 

I would also definatly try to get in with a PANDAS specialist asap. That way you can figure out if you are dealing with PANDAS or not, and then have a plan of action. I am not familiar with the dr's in your area, but I'm sure someone will chime in with some recommendations. Otherwise, some of the PANDAS dr's do phone consults.

 

I am hoping that my ped will consult with them through out the year if needed, so maybe that can be an option for your ped?

 

This board is wonderful and you will find alot of information and support.

Hang in there, you are a great Mom!

Hollis

Edited by ziva
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I am also in the suburbs of Philly. My daughter had her first major onset of PANDAS at age 5 in 2007. She now just turned 10. We have also discovered a year ago that she is dealing with lyme and other tick-born infections. I would be happy to share our information if you pm me. I have a ped. that could assist you with the PANDAS and a wonderful DAN/DO who accepts insurance and is very helpful in running labs.

 

Like someone said above, you will find great support and advice here!

Edited by philamom
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Thank you so much for your replies. We are on Vacation right now and I am just trying to figure out what is normal, tired, over active vacation behavior and what is different. Part of me so bad wants to just ignore this and say it is nothing but something is just tugging at me... I have to at least get a good evaluation by a PANDAS specialist. I need to know for sure.

 

I just want to say that having people who get the feelings and have been there, makes me feel much less alone. I will pm and will be back here to figure out best course of action when we get home this weekend.

 

I got Dr E name from another post here and just looked her up to see who she was.

 

I am curious what kind of Dr treats Pandas? Infectious disease? Psychologist? Neurologist?>

 

What I am burdened with today and prognosis? What is the outcome for kids with PANDAS?

 

My entire brain is just so full or mixed thoughts... My mama bear instinct mixed with sadness..

 

Sorry, I know I am rambling but I don't want to get into it too far with Dh until I know more.

 

Thank you again..

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You could start with some basic labs: ASO, D-NASE, Streptozyme Screen -- although, if negative doesn't rule out PANDAS, IgG Serum & sub-classes, Streptococcus Pneumoniae 14 Serotype, Mycoplasma, Igenex Westen Blot for lyme.

 

We see an immunologist in CT for daughter's PANDAS.

Edited by philamom
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Welcome, Baylor.

 

A good paper (that doctors should respect also) you might want to read is "...A Way Forward"

http://pandasnetwork.org/wp-content/uploads/2010/09/JrnlChildPharma-LeckmanKurlanMurphy.pdf

 

In this paper, it will explain things like

"Patients with OCD or tic disorder were more likely

than controls to have had a streptococcal infection in the 3 months

before onset date, and the risk of OCD or a tic disorder was higher

among children with multiple streptococcal infections within

12 months."

 

So, what I would like to know is if you have taken him for another strep test since you started noticing his tics and outbursts? Also, if he has had any otehr infections recently.How is the health of family members?

 

Also, a good article, with an overall good explanation of PANDAS can be found here http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/

Edited by Vickie
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Welcome, Baylor.

 

A good paper (that doctors should respect also) you might want to read is "...A Way Forward"

http://pandasnetwork.org/wp-content/uploads/2010/09/JrnlChildPharma-LeckmanKurlanMurphy.pdf

 

In this paper, it will explain things like

"Patients with OCD or tic disorder were more likely

than controls to have had a streptococcal infection in the 3 months

before onset date, and the risk of OCD or a tic disorder was higher

among children with multiple streptococcal infections within

12 months."

 

So, what I would like to know is if you have taken him for another strep test since you started noticing his tics and outbursts? Also, if he has had any otehr infections recently.How is the health of family members?

 

Also, a good article, with an overall good explanation of PANDAS can be found here http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/

 

Thanks for the information.. I will read it.. We came home early from the shore (due to Hurricane on the way)and I am going to call Ped tomorrow and see if he can get tested for strep again and explain the issues.. He has been healthy other than the strep. Everyone in the family is pretty good. DH has MS and I just got over a bout of vertigo but other than that.. everyone is good. No fevers, no colds.. Nothing..

 

I love my ped and I hope he is on board with all this. He knows My son well and should be able to see the tics and differences himself.

 

What I need to know is ... Is this recoverable? Is there something that will stop this and reverse it? Or is this something he will deal with forever?

Edited by Baylor
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Welcome, Baylor.

 

A good paper (that doctors should respect also) you might want to read is "...A Way Forward"

http://pandasnetwork.org/wp-content/uploads/2010/09/JrnlChildPharma-LeckmanKurlanMurphy.pdf

 

In this paper, it will explain things like

"Patients with OCD or tic disorder were more likely

than controls to have had a streptococcal infection in the 3 months

before onset date, and the risk of OCD or a tic disorder was higher

among children with multiple streptococcal infections within

12 months."

 

So, what I would like to know is if you have taken him for another strep test since you started noticing his tics and outbursts? Also, if he has had any otehr infections recently.How is the health of family members?

 

Also, a good article, with an overall good explanation of PANDAS can be found here http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/

 

Thanks for the information.. I will read it.. We came home early from the shore (due to Hurricane on the way)and I am going to call Ped tomorrow and see if he can get tested for strep again and explain the issues.. He has been healthy other than the strep. Everyone in the family is pretty good. DH has MS and I just got over a bout of vertigo but other than that.. everyone is good. No fevers, no colds.. Nothing..

 

I love my ped and I hope he is on board with all this. He knows My son well and should be able to see the tics and differences himself.

 

What I need to know is ... Is this recoverable? Is there something that will stop this and reverse it? Or is this something he will deal with forever?

 

My pandas doctor says this usually goes away after puberty ,but who knows. I've been dealing with this with my daughter for over 1 yr and she most likely had it for years before. btw my daughter is 11. The unknown time frame of this pandas is very scary to me. I personally have a hard time wondering is she bipolar even after over 5 abx treatments that changed her after 3 days. It's hardvo accept as it doesn't just go away. Unfortunately my daughters titers when I had them done twice were normal, so it's harder for me as I don't have concrete answers,but as I have learned there is nothing totally concrete with pandas that's why it's so hard to accept it sometimes. Regardless, it's tearing up family..as my two other children are non pandas. Its very hard to deal with one child and have her brother and sister so confused and frusterated. I have told them about it pandas, but her behavior at times is so hard on them i feel its not fare to them growing up. Also my ped doesn't help either she is not supportive. That's why I had to trust my gut and go to a pandas specialist. So frustrating and depressing thank god everyone on this forum actually understands what each and every one of us goes through .

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IF you find the right DR's, if it is PANDAS, your child can get well. You must believe that and not stop until you find the right help.

 

Some kids get back to 100% with just the right antibiotics. Others have underlying infections that need to be addressed, like Lyme Disease or immune deficiency and those things need to be addressed to get well. Kids who aren't resonsive enough to antibiotics go on to have IVIG or Plasma Exchange and then get well. Some kids have complicated cases and it takes a while to figure out all that is wrong, that is why it is imperative to have a dr. that knows what to look for and how to treat it.

 

A PANDAS specialist is imperative. What makes someone a pandas specialist is an open mind and experience in seeing kids get well after treating the right infections/underlying causes. Unfortunately, they are few and far between and most of us travel a good distance to see one. I drive 6 hour but other people must fly to see them. It's unfortunate, but you are in the early stages of figuring this out so you are WAY ahead of some of us whose kids have been sick much longer before we figued it out.

 

Best of luck to you.

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PANDAS is curable, especially if caught early. If your son still has strep or the tics ask for azithromax. It could be a resistant strain of strep. Azithromax, for many will do the trick. What I believe for my son that takes him quickly out of episode is a month long steroid taper. He is also on augmentin every day to keep strep away.

 

My son remained symptom free for a year. He had another episode this summer after he got his tonsils removed. Another month long steroid taper. He is perfect. Steroids, in my opinion, are key.

 

You just have to keep on it. At first signs of relapse, get that steroid taper.

 

This is just my opinion as to what has worked for us.

 

My son was treated very early. He was diagnosed within one week. This is because his brother has severe pandas and we knew what it was.

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  • 2 weeks later...

Thanks for all the information. I have to tell you that after I came home from vacation I was overwhelmed and thought.. Maybe I am just imagining it..

 

I am not. It is worse. His teacher called me to tell me that the kids were telling him to "knock it off" because he kept shutting his jaw tight over and over making that click noise. He started in June with throat clearing and went to a weird gurgle noise and now to this forceful clicking. He is also having behavior issues and outbursts. Trouble focusing... I feel like a failure. I just did not want to believe it..

 

Today, I made an appt with his ped, Though I am not expecting much, I am going to ask him for a strep test and then the blood test.. But I don't know the exact name.. TITER is all I can find.. But I am not sure what they are testing for exactly.

 

I contacted CHOP near me as there was the name of a Dr on a list there.. I also contacted another DR and he emailed me right away and told me to start Motrin. That some kids see improvement immediately with that and while it is not a cure, It will help him. That the cause still needs to be found.

 

My problem is that he does not take any insurance but one. He said he would see me and charge me monthly payments but then will my insurance cover the meds? or tests? Money is tight now and I know money is no object when it comes to a childs health, But I am not sure if I should go that route or if I should stick with the local PANDAS specialist.

 

And what kind of Drs usually treat this? The one in Phila is a Psychologist and that makes me nervous. I don't want my son just put on meds of all sorts.. I am worried about making a wrong decision and making it worse!

 

Is that possible?

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Did you mean a psychiatrist in Philly? Psychologists are not medical doctors and cannot prescribe meds.

 

We consult w/ a PANDAS specialist in NJ who does not take our insurance and the blood tests and medications were covered by our insurance and we are out of state. Actually, we paid upfront and the doctor submitted the bill to our insurance who did end up covering it.

 

We have not had any success w/ local doctors so I am very biased toward the PANDAS specialists.

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Did you mean a psychiatrist in Philly? Psychologists are not medical doctors and cannot prescribe meds.

 

We consult w/ a PANDAS specialist in NJ who does not take our insurance and the blood tests and medications were covered by our insurance and we are out of state. Actually, we paid upfront and the doctor submitted the bill to our insurance who did end up covering it.

 

We have not had any success w/ local doctors so I am very biased toward the PANDAS specialists.

 

 

It probably was a psychiatrist. It freaked me out because my first thought was I was worried about my child being medicated.

 

That would be great if we could get reimbursed. Can I ask what meds and labs tend to cost? Money is really tight for us now and I want to make sure I have what I need even if it means borrowing it.. The Dr I spoke to was Dr T.

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