Questions about PANDAS

[CFinEP]

Late last year my 3 yr old son developed a blinking tic. It stopped after about a week then returned several months laters. This happed off and on for several months. In about April or May of this year he developed a neck tic in which he would brush his chin to his shoulder. That too stopped after about a month. Then last month, 8/17/05, he developed an abdominal tic in which his stomach would contract, and his legs would cross. This just terrified me as the tic was about every 3 seconds.

 

The following day a visit to our pediatrician a rapid strep test came back positive. After two rounds of antibiotics, a rapid strep test came back negative but he has continued with the blinking tic and neck tic only now he just turns his neck abruptly.

 

Our doctor recomended I read about PANDAS. I have but somethings remain unclear to me.

 

1) Is it possible the blinking and neck tics are one condition and the abdominal tic was a result of PANDAS. It seems the abdominal tic stopped with the antibiotic treatment.

 

2) Does PANDAS ever go away?

 

3) What can I do today to help stop the blinking and neck tics?

 

We are visiting a neurologist and ENT doctor next week but I am afraid they are going to send us home with medications. I want to treat this naturally first.

 

I am having a hard time coping with the fact that I did not take my son to the doctor upon the onsett of the blinking tic assuming that is when the strep began. I have two younger sons and I fear that they may too develop this. I am so thankful that this forum exists becasue as least now I no I am not alone.

 

I look forward to hearing from anyone!

[Ronnas]

Hi there. I do understand how you feel as my son had a sudden onset of tics at the age of 5. He is now 9 years old. The NIMH has good information about PANDAS and I have highlighted below some parts I think you may want to review.

 

What are the diagnostic criteria for PANDAS?

 

A. They are:

 

Presence of Obsessive-compulsive disorder and/or a tic disorder

Pediatric onset of symptoms (age 3 years to puberty)

Episodic course of symptom severity

Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

(My son had all of these including the motoric hyperactivity, or adventitios movements and choreiform movements)

 

Q. What is an episodic course of symptoms?

 

A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD return just as suddenly and dramatically as they did previously.

 

Q. Are there any other symptoms associated with PANDAS episodes? A. Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

 

ADHD symptoms (hyperactivity, inattention, fidgety)

Separation anxiety (Child is “clingy” and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.) (This absolutely describes my son and is one of the first symptoms I notice when he has a flare-up)Mood changes (irritability, sadness, emotional lability) Again the emotional lability is another sign even before the tics that my son is having a flare-up)Sleep disturbance

Night- time bed wetting and/or day- time urinary frequency

Fine/gross motor changes (e.g. changes in handwriting)

Joint pains

 

My son has all of the above symptoms during a flare-up

 

 

It does sound like your son does have tics and that the recent strep infection caused them to intensify. The fact that it improved with the antibiotic could mean that he will be prone to symptom fare-ups with strep. You do not say if anyone in your family ticced. Once you start reading about tics you may see some of the same tics in other family members and were just unaware of them. PANDAS is a tricky subject and you are lucky to have found the support of a good doctor and just the fact that he was aware of PANDAS is good news. The excellent thing is that from now on you can be watchful of him for any symptoms of strep and if you are at all concerned re: an increase in tics it sounds like your doctor will be open to having him tested for strep and treated if necessary.

 

You asked... does PANDAS ever go away? Certainly my own experience has been that even though it has not "gone away" for my son as he has gotten older it has become much, much easier to deal with. I would expect that as he gets older this tread will continue. It really is ok for kids to tic...tons of kids do if you look around. I have found not focusing on the tics to be of great benefit to my son.

 

What can I do today to help stop the blinking and neck tics? I would begin by looking at his diet. There is a ton of information here regarding dietary causes of tics. My son tics with all dairy, others see benefits from the fiengold diet etc.

Eliminating dairy, eggs, chocolate and corn (ie. cornstarch, corn flour etc) was all an important part of helping my son....as of now milk is really only his only big trigger. For now you could begin giving him a good multi-vitamin and seek out a doctor knowledgeable in natural therapies for children especially tics if you can. We had the guidance of a wonderful pediatrician and naturopath docotr which supplemented what I learned on-line. There is a link at the top of the page to get you started in finding a doctor.

 

Finally, welcome to Lattitudes...it's a great site...tons of information and keep reading and asking questions...as far as guilt goes...believe me it is a waste of time...you do the best you can and hindsight is just that...you move forward and do the best you can. Take care...I have to run and get my kids from school now!

Ronna

[CFinEP]

Thanks so much Ronnas.

 

You mentioned flare-ups. When does your son have a flare-up? Does he get sick which causes a flare-up? Like I mentioned, my son was diagnosed with strep but what I am not sure is if the strep caused all the tics. He has had a runny nose for the past week which makes me wonder if this is why the blinking tic has not stopped.

 

What type of tics are most commonly associated with PANDAS?

[ad_ccl]

Hi CFinEP,

 

Just wanted to add to what Ronna has already told you. My son was also diagnosed a year ago with PANDAS after a sudden and explosive onset of tics. Antibiotics did initially clear things up but each time we went off antibiotics the tics returned. To make a looooong story shorter...and to give you some hope...my son is doing very well - he is on prophylactic antibiotics to try and prevent another strep infection ( I still have mixed feelings on this), he does have ups and downs, nothing like the first few months though. He does get tics and the emotional laibility, poor handwriting, ADHD type behaviour before an onset - but these episodes are getting less and less - tics are quite subtle now and only last a couple of days. We are no longer having complex motor and vocal tics. He did have a chronic cough for several years prior to the PANDAS - interestingly this cough did not go away on antibiotics, but did go away when we took him off dairy. He also had eye blinking a few times prior to the PANDAS and that would go away on antihistimine drops.

What we find now, is tics can increase with any infection, viral or bacterial. The immune system is the key - we have been building his immune system by taking a variety of vitamins. We also did the food allergy testing and took him off all the foods he showed a sensitivity to, this was when we saw a big difference. We are also able to recognize some triggers, lighting, tv, excitement, all of these are improving over time.

I also have two younger sons and share your concern about what is in store for them. My PANDAS child had chronic infections as a child, and I think that probably weakened his immune system. I think so many variables are at play - we did do the ELISA testing on the other two and have been more careful about the foods they get, and we make sure to give them multivitamins.

 

Regarding tics associated with PANDAS. When my son has the overnight sudden onset, I am not sure a tic existed that he did not have. He literally ticced every second and the tics were both motor and vocal - and complex. It was crazy - I could not believe anyone's body could do what his was doing, no actor could imitate him. Tics included eye rolling, shoulder shrugging, sniffing, coughing, twirling his hair, arm jerks, leg jerks, etc etc etc, many at the same time. It was horrific to watch. Luckily we have never had tics to this same degree as the first onset. Last week he had a stomach upset and we had very little emotional stuff and minor blinking, this lasted about 3 days - he is pretty much 100% now. We did keep him home from school for a few days. We are now taking the approach that if he is ticcing, he is fighting something, so it is best for him to rest.

 

Regarding the question of whether PANDAS goes away - I am of the belief that it does. I have seen such dramatic improvements already, we also now think my older brother may have had PANDAS as a child, not as severe as my son. He is 100% fine now.

 

Good Luck

[CFinEP]

 

What we find now, is tics can increase with any infection, viral or bacterial.  The immune system is the key - we have been building his immune system by taking a variety of vitamins.  We also did the food allergy testing and took him off all the foods he showed a sensitivity to, this was when we saw a big difference.  We are also able to recognize some triggers, lighting, tv, excitement, all of these are improving over time.

 

 

 

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Dear ad_ccl:

Thank you for your reply. Your reply really struck me in that your story sounds just like mine. Just today I was telling my husband that I think the sniffles my son has had for a week now is the cause of the blinking tic. While my son was being treated with antibiotics for strep, he was fine but almost 24 hours after being of the medication he began with the blinking tic. You have provided me much hope that we will get these problems under control.

[Giselle]

Hi there, just a question regarding PANDAS. My son has many deficiencies and allergies that we are addressing but he also got really bad last April after a bout with a really bad flu and then within days a strep infection. We've been told he is probably a strep carrier (they said I was too) - they didn't explain it very well or I didn't get it well. They just said that it was probably in our bodies all the time - that we'd throat culture it even without symptoms. Could anyone explain this to me?

Thanks,

Giselle

[CFinEP]

I have another quick question on PANDAS. For everyone whose child was diagnosed with PANDAS, did your child already have a tic/OCD prior to the PANDAS diagnosis. What I am trying to determine is if children who develop PANDAS if they have already had an existing tic.

 

Also, which type doctor made the PANDAS diagnosis for your kids?

[ad_ccl]

For my son I guess the answer was yes he did have tics - but those tics were allergy related. The cough could have been described as a tic - but it went away 100% once we went off milk. This cough had been going on for 3 years - it drove me crazy! It did not go away even on antibiotics but has not returned for a very long time - we went off milk in January. His eye tics - blinking and rolling would go away with the use of antihistimine drops. The tics he had during his overnight onset were all tics we had NEVER seen before. From what I recall the PANDAS diagnosis is when there is a sudden overnight onset of tics or an exacerbation of tics. So I would think you could still be diagnosed with PANDAS if you had minor tics in the past then a sudden exacerbation of tics coinciding with a strep infection.

 

In terms of who diagnosed the PANDAS, my pediatrition diagnosed it based on the sudden onset of symptoms, the positive strep test and high titers and the incredible improvement on antibiotics. A psychiatrist, neurologist and infectious disease specialist all concurred with the diagnosis.

[kim]

Giselle,

 

I was told youngest son was probably a carrier too. I guess it means that you can test positive to streph while having no symptoms. We would go in with a sore throat and Dr. would say that it looked a little red, then the culture would come back positive. This happened many times. Now our problem is the opposite. He has a sore throat, white spots, but no fever and the cultures last spring, right before school got out, kept coming back negative. He was home yesterday with the same thing. Here we go again!

 

The Alternative Dr. said kids with allergies get swollen tonsil tissue, and food particles will get lodged there and cause the white spots. Does anyone else get white spots with no strep?

 

Here is an article from a google search on streph carriers. There are many, if you want to check. http://www.sheriziemann.com/id34.htm

 

Kim

[Giselle]

Thanks Kim, I read the article and it pretty much explains that you could just be an individual that has strep in their system and as long as you're asymptomatic everything is fine. I just think that is strange - especially when the kid tics and some tics are known to be caused by strep. My son already ticced but then this April his very manageable TS went absolutely ballistic after a round of strep and on top of that they say he's a carrier - that he always has it. Is it a part of the puzzle or was that last case of strep another car on his overloaded bridge? Another nugget to tuck away perhaps for future use. Thanks so much for the article.

 

Giselle

[kim]

Giselle,

 

Have you had Hoyt's strep titers tested? I haven't paid attention to the details of PANDAS because my boys tics were gradual onset and no real problems with OCD, but my understanding is that it isn't the strep itself, it's the antibodies that your body produces to the strep, that causes the problem. Apparently those antibodies can have an effect on the basil ganglia. If you give an antibiotic when you have active symptoms, your body will not produce these, or at least in as large of an amount? So an inactive (carrier) would not have the increase in tics, since the body isn't producing antibodies at that time.

 

I wonder though, if you are a carrier, what if the streph isn't detected in the throat. I think Chemar just said that you need to have the blood tested. So could a child be having a flair of strep, located else where in the body, have a negative throat culture, and still have an increase in tics? I guess that's where the high titers would come in. I am trying to clarify this as much for myself as for you. These white spots and repeated sore throats have me nervous with youngest son too, but it has seemed to be the biggest problem in the spring and fall, so maybe it is allergy related, and he is not experiencing an increase in tics.

 

I'm glad to hear your little guy stabilized quickly! I know you were going to increase his B12, you think that helped?

 

Kim

[SDK]

My son started tics, hyperactive behavior, and compulsive type of symptoms a year ago. It coincided with a strep infection. A neurologist told us that the only way to really check that he has PANDAS is to check his ASO titers monthly and to look for correlations with tic flare ups. Unfortunately, many doctors will not go along with monthly testing. We have found a pediatrician who seems to go along with it. It has proven invaluable in my opinion because my son has no sore throat and a negative throat swab most of the time. Since we are monitoring the titers, we can tell if he has had a recent strep infection and treat him immediately.

 

I wonder if (as other have implied in their posts) there is strep somewhere else in his body. I suppose though he cannot be a permanent carrier since his titers went to normal level four months ago.

[kim]

SDK,

 

Are you saying that during the monthly monitoring of titers, that it has indicated strep even with no sore throat or other symptoms?

 

Also, would like to know if you would classify his onset as "explosive?" My boys tics very well may have started in correlation to a strep infection, as they both had it frequently. The other thing I wonder about is gut flora. I remember the boys taking 2 rounds of amoxicillan followed by another anitbiotic to finally clear the strep. If the antibodies didn't get the basil ganglia, i sure can buy that the antibiotics screwed up the digestion process, especially if they had some degree of damage from vaccines. Just thoughts.

 

 

 

 

kim

[SDK]

Kim,

 

yes, during the monthly monitoring of titers since January, it has happened twice so far that the titers went up with no fever, sore throat, headaches or other physical symptoms. Once, the swab was negative too (we did not take a swab the second time). There was an increase in silliness, activity level, and tics at both times.

 

I am not sure what "explosive" means. If it means that there were NO tics before, and they started one day out of nowhere, yes they did (eye blinking only initially). At the same time, my son suddenly became silly, hyper, emotionally liable, food intolerant, and his hand writing deteriorated. His tics were not of that severety as Allison describes of her son.

 

My son had frequent upper respiratory infections between the ages of 1 and 3 years and took loads of antibiotics back then. Last month we tested for yeast; it was found at a mild level, but we started treating it with Nystatin and probiotics.

 

SDK

[Chemar]

The types of Strep that can cause PANDAS are not only the common strep throat ones.........there are a variety of strains of streptococcus and so that is why there is often no clear symptoms of strep as we know it.......yet a titre can show very high levels of strep in the blood. So when testing for PANDAS related strep, it is necessary to do bloodwork, not just throat swab/cultures.