Just found this site. Could my son have Pandas?

[1Purple_peep]

HI all!

 

I'm so glad to have found this site after researching OCD, Strep, Clarition and tics.

 

My 5 year old had been irratable, fresh and defiant for a few weeks. This was VERY unlike him. He had a stuffy nose so I suspected he also had a ear infection. Out of the blue ,he also tells me that he's having "bad thoughts" about mommy, daddy, the cat and dog. I'm very aware of these types of thoughts, as I have OCD.

 

I take my son to the Ped who was on call for our Dr. No ear infections but he has a raw throat and his nasal area was red/ swollen. She put him on Clarition and gave me the name of a Psy for the bad thoughts.

 

After a few days on the Clarition, he started this odd facial/nose stretching thing. We attributed this to a dry nose. He was doing it contantly but couldn't tell me why. I would ask him if his nose itched and he would say no.

 

A few days later, my son got REALLY sick. He was throwing up,had the worse pain near his belly button and a high temp. I believed he was having appendicitis. I rushed him to the dr. and right away she believed that he had strep throat. He never complained about his throat, only his tummy.

 

The quick test did not show up but the culture that was send out came back very positive for strep. This was the first time he has had Strep.

 

He was put on Amox. for 10 days.

 

Next, we were off to the Psy. who diagnosed OCD. We decided to try him on Celexa as I do well with that, for my OCD. I was checking out OCD in children online and found a conection beween Strep and OCD. That just blew my mind. I just know there is a conection here as my little boy has never had any thing so unusual like this before.

 

This morning, he tells me that he can't stop blinking his eyes. I again, thought it was from having dry eyes in the morning.

 

After school, the blinking and facial twitching was out of control. I called the Psy. right away. He informed me that this was from the Clarition? We are to stop giving it.

 

I've only read a little about Pandas but I'll be here reading every thread, to get educated about this.

 

I'd love to get any of your thoughts about this.

 

Thank you for your time!

Anne

[saidie10]

Welcome and I to was so relieved to find this site...it has been a big source or comfort and help! I hope you find the answers you are looking for and I hope your son improves. I would say it definitely sounds like there is a connection with the sudden onset of symptoms along with him testing positive for strep!

 

HI all!

 

I'm so glad to have found this site after researching OCD, Strep, Clarition and tics.

 

My 5 year old had been irratable, fresh and defiant for a few weeks. This was VERY unlike him. He had a stuffy nose so I suspected he also had a ear infection. Out of the blue ,he also tells me that he's having "bad thoughts" about mommy, daddy, the cat and dog. I'm very aware of these types of thoughts, as I have OCD.

 

I take my son to the Ped who was on call for our Dr. No ear infections but he has a raw throat and his nasal area was red/ swollen. She put him on Clarition and gave me the name of a Psy for the bad thoughts.

 

After a few days on the Clarition, he started this odd facial/nose stretching thing. We attributed this to a dry nose. He was doing it contantly but couldn't tell me why. I would ask him if his nose itched and he would say no.

 

A few days later, my son got REALLY sick. He was throwing up,had the worse pain near his belly button and a high temp. I believed he was having appendicitis. I rushed him to the dr. and right away she believed that he had strep throat. He never complained about his throat, only his tummy.

 

The quick test did not show up but the culture that was send out came back very positive for strep. This was the first time he has had Strep.

 

He was put on Amox. for 10 days.

 

Next, we were off to the Psy. who diagnosed OCD. We decided to try him on Celexa as I do well with that, for my OCD. I was checking out OCD in children online and found a conection beween Strep and OCD. That just blew my mind. I just know there is a conection here as my little boy has never had any thing so unusual like this before.

 

This morning, he tells me that he can't stop blinking his eyes. I again, thought it was from having dry eyes in the morning.

 

After school, the blinking and facial twitching was out of control. I called the Psy. right away. He informed me that this was from the Clarition? We are to stop giving it.

 

I've only read a little about Pandas but I'll be here reading every thread, to get educated about this.

 

I'd love to get any of your thoughts about this.

 

Thank you for your time!

Anne

[Iowadawn]

Unfortunately--WELCOME!!

 

IF (I said IF) your child has PANDAS you have the distinct advantage of getting right on top of it. So many of us have gone YEARS. SOoooo.....I would waste no time in consulting/making an appt with one of the PANDAS docs. They can be found on the forum Get an up or down take on your son's symptoms. Don't waste your time trying to educate a doc. In the meantime, learn all you can learn. If you can get a family doc on board early this beneficial.

 

My bit advice is to run, don't walk to the PANDAS doc of your choice to get their take on the symptoms. Whether it's PANDAS or not you need to know so you have a proper treatment plan going fwd.

 

Best wishes & prayers. You are a sharp cookie!!

 

Dawn

[Iowadawn]

1Purple-Peep----I meant to say: I love your "name"!!

[kimballot]

Welcome. I am sorry that you child has been ill, but it is good that you found this site. I am going to echo the sentiments of previous posters - get a consult with a PANDAS doc. The docs most frequently used (in alphabetical order) are Dr B - Dr Bouboulis; Dr K - Dr. Kovacevic; Dr L - Dr Latimer; Dr T - Dr Triffileti. Other doctors may also be helpful (see http://www.latitudes.org/forums/index.php?showtopic=5023). Don't spend time trying to educate someone and bring them up to speed. You need an educated person to lead you now.

 

The symptoms may subside in a few days. Do not let that stop you from pursuing this.

 

I also recommend documenting things as objectively as possible. It is amazing what you forget in just a few days. Buster has a good charting system (but I cannot find the link now - anybody have that?). For now, I'd sit down once a day and write down your observations and list all medications and illnesses. You may also want to videotape the tics (just one short sample) in case you have to explain them to someone later.

 

Please stay connected and keep us posted. Best of luck!

[peglem]

I take my son to the Ped who was on call for our Dr. No ear infections but he has a raw throat and his nasal area was red/ swollen. She put him on Clarition and gave me the name of a Psy for the bad thoughts.

 

So, just to clarify, this doc put your child on allergy meds (isn't that what clariton is?) w/o checking if the red, raw throat was strep?

 

Anyway, so glad you found this sight! Do you ever wonder if your own OCD may have an infectious etiology?

[1Purple_peep]

Thank you all for your help!

 

After doing some reading, I'm sure he has PANDAS! He has every symptom described: seperation anxiety, obsessional thoughts, irratiblilty and the tics.

 

I have been keeping track of everything since this started, thank goodness. Sometimes it does pay to have OCD LOL

 

This has been such a rough month for all of us.

 

We live in Syracuse, NY. Can anyone recommend an expert in our area? We'll fly if we have too.

 

It took us 6 years of painful and expensive infertility treatments to get our little guy. I'll do whatever I have to, so that he can get better.

 

Here he is in Sept.

 

 

Thank you again!

[Iowadawn]

What a SWEETHEART your boy is. Makes me want to cry to think of what he (& you) are going through.

 

Prayers go your way as you seek out treatment.

 

Dawn

[1Purple_peep]

I take my son to the Ped who was on call for our Dr. No ear infections but he has a raw throat and his nasal area was red/ swollen. She put him on Clarition and gave me the name of a Psy for the bad thoughts.

 

So, just to clarify, this doc put your child on allergy meds (isn't that what clariton is?) w/o checking if the red, raw throat was strep?

 

Anyway, so glad you found this sight! Do you ever wonder if your own OCD may have an infectious etiology?

 

 

Yes, the first dr on call did not check for Strep. This was on a weekend. I assume, she was thinking just allergies.

 

I never thought of my own OCD having started with an infection. Unfortunatly, my mother didn't keep notes like I do I'll have to think about that one to see what I can come up with.

 

On top of all this I'm furious with his schools psycologist! I met with her and asked her to please evaluate him as I was concerned about some of his behavior/obsessions that came on so suddenly. She said she would meet with him and send a note home in his backback. Every day, I asked him if he had seen her and he would say no. This went on for over two weeks...she has yet to meet with him.

 

When we get some concrete answers as to what is going on, she's going to be in hot water!

[1Purple_peep]

I looks like Dr Bouboulis in Ct it the one we should contact. I have two sisters that lived in Ct for over 20 years. I'd have no problem driving down, if needed.

 

Off to bed so I can start making calls, first thing in the morning.

 

Anyone know if we'll have to wait a long time to consult with Dr. B?

[EAMom]

Hi Anne!

Your screen-name is adorable, as is your son.

He sounds like a "classic" case of PANDAS. I'm glad you live close to Dr. B!

 

When you have time, look through Buster's posts under "helpful threads" http://www.latitudes.org/forums/index.php?...art=#entry26671 There's a flow-chart, Frequently Asked Questions, etc.

 

This would be a good article to pass on to the school psychologist http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

 

Is your child done with his 10 days of Amoxcillin yet? If it's been more than a week or two since his last dose you should get him recultured. Lots of PANDAS kids end up needing something stronger than Amoxcillin. Here's an article http://www.entrepreneur.com/tradejournals/.../169459644.html

 

PS...have you seen this on Peeps sushi? http://www.seriouseats.com/recipes/2010/03...ats-easter.html

[thereishope]

Welcome. Unfortunately, doctors like to blame allergies for a lot of things. Especially coughs when they don't know the reason. Have you seen improvement on the amoxicillin? Is he still taking the Claritin and has he had allerges in past years. I ask to try to determine if he even needs to take allergy meds.

 

If he can take Ibuprofen, you can give him that. That helps ease PANDAS symptoms for some kids. Also, get all family members checked for strep, even if they do not have any symptoms.

[tpotter]

I can't agree more with getting him to one of the PANDAS docs. I now it may be a bit overwhelming if you don't live near them, BUT, trust me...it is very well worth it. BECAUSE, if you get it early, it usually responds beautifully to the right antibiotic, and the proper dose (you can't just assume it is gone, and these docs know what they are doing!)

 

PANDAS is caused by the same bacteria as Rheumatic Fever, only it affects the brain. The fact that you caught it early, and had the advantage of getting right on it is huge. As another parent has already noted, many of us have been dealing with it for years, had no dx and/or improper tx, and we are dealing with a whole different ballgame.

 

When I finally found a doc from this group who knew what he was doing (Dr. K, who is in Chicago...an airplane ride away), I immediately made a phone consult with him, and after which, he was willing to consult with our local doctor. But, our doctor was not willing to keep prescribing antibiotics (which other families have found happen), and I immediately booked 3 tickets (both of my children have PANDAS...Dr. K. figured out the connection with the older one, who looked like he had Bipolar!) We now use Dr. L, because she is only a 3 hour DRIVE.

 

Trust me, and all the other parents who have commented, don't wait. The OCD and tics very well may be PANDAS, particularly in light of the fact that there was a strep infection. If that's the case, you my not have to deal with the psych drugs (they don't tend to work on PANDAS cases, anyway.)

 

Good luck.

[1Purple_peep]

Thank you all so much! And thank goodness for the Internet and this site!!!

 

I was up until 4 this morning reading what I could.

 

First thing this morning I called Daniel's Ped. She's wonderful and will be needed in this process. One of the older dr.s in the practice has seen one or two PANDAS cases in the past. I told the nurse that I would like him to be seen by Dr. B. I don't want to call him until I speak with her first.

 

The nurse was so nice and helpful. The dr will be calling me back shortly.

 

I called the Psy as well and am waiting to hear back from him.

 

I went to school and informed the school nurse and his teacher what has been going on. I brought copies of the aritcles from here, just so that they can keep a closer eye on him. The school nurse had never heard of this before.

 

Anything else I should be doing right now?

[Kayanne]

I'm really glad you found this forum so early in your son's case.

 

I think seeing Dr. B is a great idea.

 

My Daughter's case was caught early too, and she has responded fully to antibiotics and prednisone. We are fortunate that we didn't need to do IVIG or PEX.

 

That doesn't mean I won't do these procedures if needed...I'm just hoping in your son's case, it is early enough to not have to do these either....