Worried about son!

[courtneyjolie]

On October 7, 2009, after a couple of days of fever, my 8 year old son was diagnosed with Type A Influenza. Exactly one week later on October 14th, he suddenly began crying constantly, confessing things, and having obsessive thoughts. I became very concerned, being as though on Tuesday he was fine and on Wednesday things drastically

changed. This behavior continued and I brought him to a therapist. The therapist told me that he had OCD and that it was more than likely caused by “an emotionally traumatic event.” I also brought him to his pediatrician, because I felt like there had to be a medical explanation for this. This doctor told me the same thing as the therapist. There were no changes in our family, home, or school life that would constitute an emotionally traumatic event. Over the past year, he has had strep throat a couple of times. Could this be PANDAS????

 

My son is an intelligent, humorous, fun-loving, polite, honor roll student. He is now suffering in school, crying before school, taking days to complete short assignments, refusing to answer simple questions, and is unable to make any kind of decisions. He has also been very scared and worried about everything, from getting in trouble to ghosts in his room.

 

I’m not sure what steps I need to take in order to make this better. We live in Southwest Louisiana. Any suggestions??????

[bubbasmom]

I'm so sorry you're going through all of this. Of course most of us on this forum would say YEP sounds like PANDAS to me. But getting the medical care isn't going to be easy, but can be done. So you will find many opinions many different doctors recommended but the basis are the same for most - lots of antibiotics (much higher doses than I'm sure you've ever used before) medications to control the symptoms just to make everyone comfortable including you, therapists to deal with OCD, any tics and whatnot - because it doesn't seem to matter what causes the OCD it can be handled much like regular OCD.

But you will find much more educated, effective people than myself on here. So read through some of the posts. You'll see a Dr. K a lot of people use in Chicago. Its a trip but I believe most, including myself, find worthwhile. He will give you a starting point. Many other doctors that I'm not familiar with but people on here trust very much.

You'll hear talk of IVIG - which is an IV infusion of immunoglobulin. Takes two sessions, back to back days, several hours, but can help kick-start his own immune system to kick the strep antibodies (which is what is causing PANDAS).

Just get started as soon as possible with a doctor that you know treats PANDAS. The sooner the treatment the better. I would also feel free to email individual people on this forum if you see that their story applies to you to ask them questions. We're all here for the same reason, we have a child going through this, including me, my son is 12 we're in the midst of a 3 month episode of OCD, extreme rage, tics, sleep disturbances severe ADD, he too is a bright kid that got to a point where he could barely do school work. CHECK INTO HOMEBOUND FOR YOUR SCHOOL DISTRICT TO KEEP HIM FROM FAILING SCHOOL.

You can visit pandasnetwork.org pandasfoundation.org Google Jamies Story or Nicco's Story

You're getting a jump on it. You can do this.

DR K IN CHICACO HAS A WEBSITE WEBPEDIATRICS.COM

 

On October 7, 2009, after a couple of days of fever, my 8 year old son was diagnosed with Type A Influenza. Exactly one week later on October 14th, he suddenly began crying constantly, confessing things, and having obsessive thoughts. I became very concerned, being as though on Tuesday he was fine and on Wednesday things drastically

changed. This behavior continued and I brought him to a therapist. The therapist told me that he had OCD and that it was more than likely caused by “an emotionally traumatic event.” I also brought him to his pediatrician, because I felt like there had to be a medical explanation for this. This doctor told me the same thing as the therapist. There were no changes in our family, home, or school life that would constitute an emotionally traumatic event. Over the past year, he has had strep throat a couple of times. Could this be PANDAS????

 

My son is an intelligent, humorous, fun-loving, polite, honor roll student. He is now suffering in school, crying before school, taking days to complete short assignments, refusing to answer simple questions, and is unable to make any kind of decisions. He has also been very scared and worried about everything, from getting in trouble to ghosts in his room.

 

I’m not sure what steps I need to take in order to make this better. We live in Southwest Louisiana. Any suggestions??????

[thereishope]

A few here have been told that there must have been a traumatic experience recently when it was not the case.

 

When he was sick with the flu, did they do a strep test too? If not, your first step is to take him in asap for a strep test. If the rapid comes back neg,make sure it is cultured.

 

Have you noticed as you look back over the years whether you ever seen an abrupt change before this one and just over time it went away?

 

And to clarify, the OCD was sudden onset?

 

You could try to give him some Ibuprofen and see if it eases his OCD. Let us know how that goes too.

[Iowadawn]

It's a bummer that you had to come looking for answers, but it may be a blessing in disguise. IMO-run, don't walk to a doc that will at least consider a PANDAS dx. We didn't even have a strep infection that we were aware about in the past before our 10 yo was dx'd with PANDAS. You have all the makings and symptoms. Where do you live?? It may just take a little phone work to ask if a doc at a clinic is aware enough about PANDAS to take you seriously. I found our young doc, though not knowledgable about PANDAS, to be open to working with us, though we eventually ended up going to Dr. K in Chicago. I wouldn't mess around hopping from doc to doc. Get trx. Sooner it is trx'd, the more rapid & complete the recovery. Hindsight is always 20/20, but we would have been "less patient" with the care/improvement we were getting for Evan--and that was WITH a dx. The infectious disease doc was emphatic penicillin would work. We had to jump ship on him. Anyway....I'm saying a BIG HMmmmmmm. Sounds real fishy. Take care. Keep us updated on your "adventure". Dawn

[EAMom]

I think it sounds JUST like PANDAS.

 

Here's a list of FAQ's http://www.latitudes.org/forums/index.php?...art=#entry47254

 

A good place to start is a throat culture to check for strep. I would also culture family members to check for carriers.

[courtneyjolie]

[They did not do a strep test. They only did the swab to determine it was the flu.

 

He has NEVER experienced anything like this before. At first I thought he might have been depressed, until the therapist said that it was OCD.

 

Should I just demand a strep test???

[thereishope]

YES!!!!! take him today or tomroow. If teh rapid comes back neg, make sur eit is cultured. As family members too.

 

I've never had to fight the doctors in order to get my children swabbed. So start out polite and matter of fact. Now, if the say he doesn't need one, well, then demand it.

 

When I make the appt, I just say I need an appt for a strep test.

[dcmom]

Courtney-

 

A couple things for you:

 

Yes, get an immediate strep test. Go to a minute clinic or urgent care, lie and say his bf has strep and his throat is sore if you need to.

 

These symptoms clearly sound like pandas. The thing is, even if the culture is negative it could be pandas. He has had strep, which may get the pandas ball rolling, but very mildly- then H1N1 could cause an exacerbation. An initial pandas episode triggered by strep could be as simple as some fatigue, separation anxiety and urinary frequency that could be stopped immediately with antibiotics.

 

Many kids on here, including mine, have had subsequent pandas episodes triggered by H1N1.

 

My advice is not to waste your time with docs that do not treat lots of pandas kids. There are only a handful unfortunately. Contact Diana Pohlman at pandas network. org and Beth Maloney at savingsammy . com for the most comprehensive lists.

 

If this is pandas, you need to get your son on a strong antibiotic - and it may take over a month to see results. After a month on antibiotics, you may also want to consider a steroid burst.

 

I wish you the best!

[courtneyjolie]

Thank you all sooooo much!!!! It feels good just to have a conversation with people who don't think my child and I are crazy!!!!

 

I am going to get him in ASAP for a strep test.

 

I will keep ya'll posted!

 

 

Courtney-

 

A couple things for you:

 

Yes, get an immediate strep test. Go to a minute clinic or urgent care, lie and say his bf has strep and his throat is sore if you need to.

 

These symptoms clearly sound like pandas. The thing is, even if the culture is negative it could be pandas. He has had strep, which may get the pandas ball rolling, but very mildly- then H1N1 could cause an exacerbation. An initial pandas episode triggered by strep could be as simple as some fatigue, separation anxiety and urinary frequency that could be stopped immediately with antibiotics.

 

Many kids on here, including mine, have had subsequent pandas episodes triggered by H1N1.

 

My advice is not to waste your time with docs that do not treat lots of pandas kids. There are only a handful unfortunately. Contact Diana Pohlman at pandas network. org and Beth Maloney at savingsammy . com for the most comprehensive lists.

 

If this is pandas, you need to get your son on a strong antibiotic - and it may take over a month to see results. After a month on antibiotics, you may also want to consider a steroid burst.

 

I wish you the best!

[tantrums]

Hi! I'm pretty much right where you are. My son had H1N1 in the beginning of October and has very similar symptoms, although he is also raging and getting worse nearly by the day. We did not have a strep test since he wasn't showing signs of clear strep at the time, just typical flu, but the H1N1 did linger for several weeks. Maybe strep was just missed?

 

We are going tomorrow for the strep testing.

 

I know how you feel! You are NOT crazy and neither is your child!

[dcmom]

I don't want to harp on this- but remember a negative strep culture does not necessarily mean it is not pandas. H1N1 has caused many pandas kids to have exacerbations- and, there are many definite pandas kids on this site that never had a positive strep culture.

[sf_mom]

I concur!!!!

 

We believe our youngest son is PANDAS, he had Kawasaki's and many believe it to be a strep bacteria related illness but he has NO POSITIVE ASO OR ANTI-DNAse-B..... CaM Kinase 148.

 

Don't let lack of positive culture deter you from PANDAS diagnoses.

[bubbasmom]

DID YOU SEE BUSTER'S POST ABOUT FAQ'S FOR PANDAS. BUSTER IS REALLY GOOD, AND EXPLAINS THINGS VERY WELL.

 

On October 7, 2009, after a couple of days of fever, my 8 year old son was diagnosed with Type A Influenza. Exactly one week later on October 14th, he suddenly began crying constantly, confessing things, and having obsessive thoughts. I became very concerned, being as though on Tuesday he was fine and on Wednesday things drastically

changed. This behavior continued and I brought him to a therapist. The therapist told me that he had OCD and that it was more than likely caused by “an emotionally traumatic event.” I also brought him to his pediatrician, because I felt like there had to be a medical explanation for this. This doctor told me the same thing as the therapist. There were no changes in our family, home, or school life that would constitute an emotionally traumatic event. Over the past year, he has had strep throat a couple of times. Could this be PANDAS????

 

My son is an intelligent, humorous, fun-loving, polite, honor roll student. He is now suffering in school, crying before school, taking days to complete short assignments, refusing to answer simple questions, and is unable to make any kind of decisions. He has also been very scared and worried about everything, from getting in trouble to ghosts in his room.

 

I’m not sure what steps I need to take in order to make this better. We live in Southwest Louisiana. Any suggestions??????

[thereishope]

When all strep tests are negative but a sudden onset has occurred it could be that this is not the first exacerbation and now viruses trigger exacerbations as well. Parents may not recognize PANDAS symptoms if their child is very young, the symptoms are mild, or the parents can find a reason for the change in behavior (school starting, moving,etc).

 

Even so, when the behaviors change dramatically and off the charts, always rule out strep. Afterall, if there is an infection, your child will not get better until the strep is gone. It is also easier to get the antibiotics if you have a documented infection.

[thereishope]

double post