I have some questions was advised to post here (not spamming)

[Mommy]

I have a few questions. About 2 weeks ago my son (7yrs old) started displaying a tic that began with eye blinking then rolling his eyes extremely right. It became so bad one evening that it was continuous and he begged me to make it stop. We took him to Children's Hospital and after checking him with the CT scan we were basically sent home and told to follow up with a neurologist and family physician. So that is what we did. The physician wanted to do an EEG and then an MRI. After this was completed then we were to see the neurologist. All of this would take over a month to complete. The following weekend after our doctor visit my son started running a temp and vomitting. We had been advised that if he began vomitting or had temp we were to bring him back to the hospital. So off we went to the hosptial. This ER doctor talked to us about PANDAs and then checked him for strep. The strep test was positive and after listening to us and our need for answers this physician called the neurologist and advised we needed to be seen. So the following day we were seen by the neurologist. After checking him out she tells us she has seen this before and after talking about our history and his (he had always been what we thought was quirky and now believe to have been tics all along) she gives us the diagnosis of Tourettes and possible OCD. So now he has been put on low dose clonidine. He was also put on an antibiotic from the ER doctor. The neurologist ruled out PANDAs from the fact that he has always had a few tics that lasted about 2+ weeks and left or moved to something else.(sniffing, clearing his throat, smelling his hands, etc) While on the antibiotics the tics seemed less severe. Now after being off the antibiotics for 2 days I notice he seems hot and the tics seemed to be becoming more predominant again so I check him for fever. Sure enough low grade fever. I take him to the doctor today and he tests positive for Strep again. He has been given penicillin and was given a shot. My question is, am I doing everything I can? Do I need to have him checked for Rheumatic Fever? What is the long term effect of this? Do I demand him checked for Rheumatic Fever? He has always been a healthy child. He is an asthamatic but this is mostly seasonal as we have seen an allergist. I have spoken with the allergist about the allergy shots that have been recently started to rule them out as a cause for this and was told there is no way this could be any cause of any of these onsets. I'm not so sure and have stopped the allergy shots altogether. He was taking the allergy shots for seasonal blooms and grass and trees, etc. Not foods and yes he has been tested for food allergies as well) Any advice or anything anyone can throw at me would be appreciated. I'm so lost here and becoming increasingly worried something is being missed.

 

*note that he has developed other little tics now that are in his hands during all of this

 

Thank you!

[kimballot]

Hello - Welcome to the forum - though I am sorry you are facing problems that brought you here.

 

Given your son's response to antibotics it is quite possible that there is PANDAS underlying the tics. The diagnosis of PANDAS is a clinical diagnosis, so you will probably get different responses from different doctors, depending on their viewpoint.

 

Another Mom just started posting yesterday with similar questions, so I am going to put her thread here

http://www.latitudes.org/forums/index.php?showtopic=8888

 

I think you find answers to lots of your questions if you follow that thread.

 

This forum is really great - the families on here are really wise and I learn every day.

[matis_mom]

You were so lucky the ER doctor thought of PANDAS! I think you probably need to find a neurologist that "believes" in PANDAS. Not all PANDAS kids present the sudden onset. My son had an eye-blinking tic off and on, and now I realize it was probably brought on by exposure/infection with strep. So I don't understand how the neurologist could dismiss it because of that.

About checking for Rheumatic Fever, you could do that, but it is hard to get a diagnosis. My son presented swollen joints and tics, plus a newly developed heart murmur, and no one caught it. But if you could get an appointment with a rheumatologist, it may help. Just to put your mind at ease, I have yet to hear of a PANDAS child with heart complications. We did do a full cardio evaluation on my son and he is perfectly fine in that sense.

So, if I were you I would try to get him back on the strongest antibiotics you can get, and then get an appointment with a PANDAS specialist. It is very important to document everything as much as you can, so try to keep a journal of what is happening and how your son is reacting.

Next thing to do would be to check all family members for strep.

Hope this helps!

 

Isabel

[peglem]

Threads you should read:

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

And this one is a diagnosis/treatment flowchart:

 

http://www.latitudes.org/forums/index.php?showtopic=6688

[EAMom]

What antibiotics was your son on for his strep? Pen and amoxcillin have a pretty high failure rate: http://www.ivanhoe.com/science/story/2006/10/199a.html

 

The article likes Keflex, many on this forum find Augmentin XR or Azithromycin to work best on PANDAS kids.

[Megs_Mom]

So sorry you have ended up here - but glad at the same time. You'll get great advice here & may avoid years of issues if he is treated well now. Given the severe tic episode with a strep diagnosis, and the calming with abx, you have a good start to a clinical picture. You need to clear the strep first - EAMom gave you good advice there. If you have docs such as your Neuro, that dismiss PANDAS, you'll need to find one that really understands it. I would not let a partially educated doctor rule it out given your story already (anymore, I made this mistake for the first few episodes!). If you can, I'd move immediately to a specialist.

[Mommy]

Thank you for all the advice. I have looked at the links. He was given an injection of antibiotics yesterday (I can't remember what it was, I have it written down in my journal) anyway, he was also put on penicillin. Everyone has been tested in the family as well. The question I have now is, how do I find a good Neuro in my area? I have emailed a few places and made a few calls but not heard anything back.

[datagirl]

You should also read the book by Kenneth Bock - "Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies." I found a DAN doctor from the Defeat Autism Now website and that has been my starting point. I believe in focusing on the health of the immune system, so I second the other poster that recommended finding an immunologist.

 

Good luck, and trust your mommy gut!!! It's sad how often the little idiosyncrasies or symptoms are ignored by regular doctors and only the big symptoms are treated. I believe is often the unusual symptoms in the collection of symptoms that help us solve what's really going on. Maybe I've seen too much of the House tv show!? By the way, anyone know how to get a hold of those writers? Wish we could get PANDAS as an episode on House to increase awareness!

[EAMom]

Where do you live? Maybe someone can rec. a doc.

 

Ughhh. I would recommend Augmentin (or Azithromycin depending on where you live)...much more clinically effective against strep than regular pennicillin. I'm surprised they put you on pen after testing positive for strep a 2nd time. Good grief.

 

Have you checked family members (esp. siblings) for strep as well? A family member who is a carrier can reinfect your son and also cause pandas symptoms. We had major problems from our 2nd dd who is an assymptomatic carrier.

 

Also, don't forget to change toothbrushes a few days into abs and give everyone a new toothpaste. Also, don't share toothpaste (I just get each kid their own mini travel size...it lasts a while and I don't feel bad about throwing it out in case of illness).

 

I should add that there are some other pandas kids that have reacted to allergies as well as allergy shots. Anything that triggers the immune system, once the wheels of PANDAS are set in motion, can trigger tics/beh. changes.

Edited July 3, 2010 by EAMom

[TessaKrista]

EA Mom,

 

What is the best way to check to see if someone is an asymptomatic carrier? Is it through a blood test or a throat swab? How does one know that he or she is a carrier, does that mean that they will always test positive for strep, regardless of symptoms?

 

My child's pediatrician said that it doesn't make sense to test for strep if a child had strep a few months before, because the test will always be positive. Thus, she doesn't believe that one needs to treat the sore throat or test for it a few months after a confirmed strep infection, unless there are red spots or white spots on the tonsils. Your thoughts?

 

Sweet Cheeks' Mom

[TessaKrista]

Hi,

 

You said that after taking antibiotics, your son's symptoms decreased. How long after did you notice a change?

[Kayanne]

EA Mom,

 

What is the best way to check to see if someone is an asymptomatic carrier? Is it through a blood test or a throat swab? How does one know that he or she is a carrier, does that mean that they will always test positive for strep, regardless of symptoms?

 

My child's pediatrician said that it doesn't make sense to test for strep if a child had strep a few months before, because the test will always be positive. Thus, she doesn't believe that one needs to treat the sore throat or test for it a few months after a confirmed strep infection, unless there are red spots or white spots on the tonsils. Your thoughts?

 

Sweet Cheeks' Mom

 

This may sound harsh, but I think you need a new pediatrician...any doctor who doesn't treat a positive strep test is negligent.

[peglem]

EA Mom,

 

What is the best way to check to see if someone is an asymptomatic carrier? Is it through a blood test or a throat swab? How does one know that he or she is a carrier, does that mean that they will always test positive for strep, regardless of symptoms?

 

My child's pediatrician said that it doesn't make sense to test for strep if a child had strep a few months before, because the test will always be positive. Thus, she doesn't believe that one needs to treat the sore throat or test for it a few months after a confirmed strep infection, unless there are red spots or white spots on the tonsils. Your thoughts?

 

Sweet Cheeks' Mom

Checking strep titers probably isn't necessary if you already had a confirmed strep infection by swab- But, swabbing/culturing afterwards to make sure the strep is gone is a good idea and neither titers (blood) nor culture will always come up positive.

I agree with Kayanne- you need a doctor who is going to take strep seriously.

[TessaKrista]

I really wish that his pediatrician had taken strep seriously. She is a very relaxed doctor who loves to spend a lot of time talking to parents and children in her office. She smiles and jokes a lot with parents and children. I know that when we first went to her, that she was just starting her practice. I, on the other hand, am not so relaxed. I know have learned a lot as a result of this episode. I am still learning.

 

Finding another pediatrician is difficult. There aren't a lot of pediatricians around. We can go to walk-in clinics, but they don't have the same doctors there. They have retired doctors or new doctors that rotate from place to place. I can however get a second opinion. The pediatrician can send a referral to whatever doctor I want, and I can get another opinion. I can also go to the hospital urgent care clinics, where there are different doctors who attend. I have done that in the past, and they have taken strep seriously. They won't however, deal with pandas.

 

After reflecting on our situation, I see what you two are saying. You're so right. The doctor didn't want to check for strep because she said that children will always test positive for strep two months after they had a strep infection. I just assumed this to be normal. Based on what you are all saying, this is absurd thinking. Does that mean that kids should not test positive for strep a few months after their initial infection, or does that mean that we should always treat whatever positive thing shows up?

[peglem]

Does that mean that kids should not test positive for strep a few months after their initial infection, or does that mean that we should always treat whatever positive thing shows up?

 

It means if they test positive a few months after treatment

1) The treatment was not effective in clearing the infection,

 

or

 

2) the child has been re-infected

 

or

 

3) The child is a strep carrier, and clearing that will take more aggressive treatment than just a simple course of abx.

 

But, again, if she is talking about blood testing for titers- that should come up positive a few months out because it takes awhile for those titers to subside after an infection. A suprisingly large % have no rise in titers with an infection...so hard to judge by that.

 

If she is talking about the rapid test or culture coming up positive- she is either ignorant or trying to make you go away!

 

And, most doctors do think that if the child is an asymptomatic carrier, the strep is not harmful to them and should not be treated. There is no research to back this up- it is an assumption, I think because no symptoms=no illness kind of makes sense. On the other hand there is scant research to indicate that carrier state is not benign.

 

Personally, I think if a doctor is witness to evidence that neuropsychiatric symptoms worsen w/ +strep test and resolve w/ abx treatment- they would be grossly negligent to not treat for positive tests. But, there is a lot of politics in medicine, and some doctors will follow whatever "protocol" or "policy" they were taught to use, regardless of whether it is really what works best for the patient. I've had 2 practitioners who flat out told me they would not "risk their careers" to treat my daughter appropriately. 2 others have contacted my daughter's pediatrician questioning whether I had a case of meunchausen's.

Edited July 8, 2010 by peglem