Hi, I'm new, Charlotte NC area

[Lisa1971]

Hi, two days ago I had no idea about PANDAS and I am now very grateful to have found this site.

 

I am not sure if this is what my son is experiencing...here is my story...please advise, I am sorry for the length of this...

 

 

About three weeks ago, I noticed my son was counting his steps...it was subtle...I asked him about it and it turns out he has an elaborate system for gettting from room to room...OCD behaviors run in my family and my mother suffers from a myriad of personality disorders...so I was not surprised and not really concerned as he worked out his counting that if he cannot step into the next room on an "even" step...he will step in place to make up the difference...a while back he had begun counting syllables...now...each of these behaviors came right after learning about these things in school...syllables in words, odd and even numbers...and the syllable thing has gone away...so, again, not concerned...I told the pediatrician about it a few weeks ago on his well visit and we agreed to keep an eye on him.

 

Fast forward to about a four days ago...suddenly he has developed a myriad of complex tics, finger wiggles followed by hand movements followed by arm things...or leg stomps, then arm movements...if he is sitting he will move his knees, then his hands, then wiggle his fingers...when I asked him about it he says he needs to be "even"...(aside from the constant figiting, he is not any more hyperactive than usual, but he really is having difficulty sitting still) he had also began asking me so kiss him evenly...if I kissed one cheek he would want the other one kissed...I recognized this right away as an OCD compulsion and did not comply, explaining that I liked "odd"...and he was okay with it...did not freak out and went on with his business...so I know I am not in the "disorder" end of the continuum...but this rapid sudden onset from no tics to complex really concerned me, and having real life experience with OCD behaviors in my family and myself I knew this is not normal...this is not the same kid that I knew a week ago...he has always been a bit "excited", he is way above average in school, he can sit for hours playing legos, does no have a problem focusing or finishing tasks...he is a kid who if he doesn't feel like doing something...won't...he is not a perfectionist, I have to drag him into the tub (germs were my mother's thing, perfectionism mine) and that has not changed. He is a bit more obsessive in his thoughts and seems to be looping a bit...enough for me to notice, but I don't think anyone else would...the tics however...are really noticeable but seem to be bothering me more than him...

 

Googling rapid sudden onset of tics led me to PANDAS...however...no symptoms of strep...but...three weeks ago a gland popped out of his neck, low grade fever, called the doc and was told to treat with motrin...it went away. He has subtle eczema since he was a baby...it has been bothering him more the past few weeks...told to treat with Eucerin lotion...his allergies have kicked in again...but it is the time of year for that...treating with zyrtec...dark circles under eyes are pronounced as they always get with his allergies...

 

I brought him to the doctor yesterday, and basically forced him to give him a throat culture, I laid out my concerns...asked him about PANDAS, he said he knew about it but had never seen it...thought I was nuts...was convinced he was looking only at an allergy attack...until...the culture came back positive...this is only the second time I have had him diagnosed with strep...both times he has not had a single symptom...last time there weren't any tics that I noticed...but he was only 4. When the doctor came back into the room with a positive culture he seemed to take more seriously...he gave me a list of child psychologists, and we started discussing the possible next steps...including a neurologist...

 

He is now on Amoxicillian...obviously, it is very soon, and he is still ticking away...I am waiting for the psychologist to call me back to set up an appointment...I would like to have him evaluated.

 

I guess, what I am looking for here is some advice, specific tests to ask the doctors to perform, things I should and should not be doing (I was told to ignore the tics and am),...I have read through some posts...and recognize, that if this is PANDAS, he on the lower end of the spectrum for symptoms...even with the tics he is functioning fine...but, I know my kid, and I know this is not normal...I am hoping the tics subside after this round of antibiotics, but want to be prepared if they don't.

 

I am also open to talk with other memebers who are in my area and would love any doctor referrals...

 

I appreciate any advice you can give...and if I am way off base with this...please tell me that too...

 

Thank you

--Lisa

[Diana]

Hi, two days ago I had no idea about PANDAS and I am now very grateful to have found this site.

 

I am not sure if this is what my son is experiencing...here is my story...please advise, I am sorry for the length of this...

 

 

About three weeks ago, I noticed my son was counting his steps...it was subtle...I asked him about it and it turns out he has an elaborate system for gettting from room to room...OCD behaviors run in my family and my mother suffers from a myriad of personality disorders...so I was not surprised and not really concerned as he worked out his counting that if he cannot step into the next room on an "even" step...he will step in place to make up the difference...a while back he had begun counting syllables...now...each of these behaviors came right after learning about these things in school...syllables in words, odd and even numbers...and the syllable thing has gone away...so, again, not concerned...I told the pediatrician about it a few weeks ago on his well visit and we agreed to keep an eye on him.

 

Fast forward to about a four days ago...suddenly he has developed a myriad of complex tics, finger wiggles followed by hand movements followed by arm things...or leg stomps, then arm movements...if he is sitting he will move his knees, then his hands, then wiggle his fingers...when I asked him about it he says he needs to be "even"...(aside from the constant figiting, he is not any more hyperactive than usual, but he really is having difficulty sitting still) he had also began asking me so kiss him evenly...if I kissed one cheek he would want the other one kissed...I recognized this right away as an OCD compulsion and did not comply, explaining that I liked "odd"...and he was okay with it...did not freak out and went on with his business...so I know I am not in the "disorder" end of the continuum...but this rapid sudden onset from no tics to complex really concerned me, and having real life experience with OCD behaviors in my family and myself I knew this is not normal...this is not the same kid that I knew a week ago...he has always been a bit "excited", he is way above average in school, he can sit for hours playing legos, does no have a problem focusing or finishing tasks...he is a kid who if he doesn't feel like doing something...won't...he is not a perfectionist, I have to drag him into the tub (germs were my mother's thing, perfectionism mine) and that has not changed. He is a bit more obsessive in his thoughts and seems to be looping a bit...enough for me to notice, but I don't think anyone else would...the tics however...are really noticeable but seem to be bothering me more than him...

 

Googling rapid sudden onset of tics led me to PANDAS...however...no symptoms of strep...but...three weeks ago a gland popped out of his neck, low grade fever, called the doc and was told to treat with motrin...it went away. He has subtle eczema since he was a baby...it has been bothering him more the past few weeks...told to treat with Eucerin lotion...his allergies have kicked in again...but it is the time of year for that...treating with zyrtec...dark circles under eyes are pronounced as they always get with his allergies...

 

I brought him to the doctor yesterday, and basically forced him to give him a throat culture, I laid out my concerns...asked him about PANDAS, he said he knew about it but had never seen it...thought I was nuts...was convinced he was looking only at an allergy attack...until...the culture came back positive...this is only the second time I have had him diagnosed with strep...both times he has not had a single symptom...last time there weren't any tics that I noticed...but he was only 4. When the doctor came back into the room with a positive culture he seemed to take more seriously...he gave me a list of child psychologists, and we started discussing the possible next steps...including a neurologist...

 

He is now on Amoxicillian...obviously, it is very soon, and he is still ticking away...I am waiting for the psychologist to call me back to set up an appointment...I would like to have him evaluated.

 

I guess, what I am looking for here is some advice, specific tests to ask the doctors to perform, things I should and should not be doing (I was told to ignore the tics and am),...I have read through some posts...and recognize, that if this is PANDAS, he on the lower end of the spectrum for symptoms...even with the tics he is functioning fine...but, I know my kid, and I know this is not normal...I am hoping the tics subside after this round of antibiotics, but want to be prepared if they don't.

 

I am also open to talk with other memebers who are in my area and would love any doctor referrals...

 

I appreciate any advice you can give...and if I am way off base with this...please tell me that too...

 

Thank you

--Lisa

[browneyesmom]

Hi Lisa,

 

I'm new here myself, so I can't offer you much in the way of advice or confirmation of what you are seeing with your son, other than it sounds possible to me.

 

One interesting thing is that my daughter had strep & scarlet fever about a month ago, was diagnosed just a few days after her extreme symptoms began. Last Friday I brought her back to our pediatrician. Her throat did not look that bad, but she was complaining of a sore throat, headache, nausea and had little appetite... all the symptoms she gets when she has strep, so I was certainly thinking it was highly likely as she gets it a lot. She was positive, which our MD said surprised him. That is when he mentioned PANDAS to us and when I first learned of it.

 

Same as you, I know my daughter and something is wrong. I will say this much... you know your child. If you are being as objective as you can and are still convinced that something is wrong with your child, pursue it. You have nothing to lose... all that can happen is one of two things. Either you will learn that you have nothing to worry about or you will find the source of the problem and be able to talk about treatment options. Either way, it's better to pursue it and find out, imo. Sometimes, we have to advocate for our children because as you said, we know them best.

 

I wish you and your son the best and I hope you find healing for him soon! Please check your inbox also; I will send you a message there.

 

 

 

Hi, two days ago I had no idea about PANDAS and I am now very grateful to have found this site.

 

I am not sure if this is what my son is experiencing...here is my story...please advise, I am sorry for the length of this...

 

 

About three weeks ago, I noticed my son was counting his steps...it was subtle...I asked him about it and it turns out he has an elaborate system for gettting from room to room...OCD behaviors run in my family and my mother suffers from a myriad of personality disorders...so I was not surprised and not really concerned as he worked out his counting that if he cannot step into the next room on an "even" step...he will step in place to make up the difference...a while back he had begun counting syllables...now...each of these behaviors came right after learning about these things in school...syllables in words, odd and even numbers...and the syllable thing has gone away...so, again, not concerned...I told the pediatrician about it a few weeks ago on his well visit and we agreed to keep an eye on him.

 

Fast forward to about a four days ago...suddenly he has developed a myriad of complex tics, finger wiggles followed by hand movements followed by arm things...or leg stomps, then arm movements...if he is sitting he will move his knees, then his hands, then wiggle his fingers...when I asked him about it he says he needs to be "even"...(aside from the constant figiting, he is not any more hyperactive than usual, but he really is having difficulty sitting still) he had also began asking me so kiss him evenly...if I kissed one cheek he would want the other one kissed...I recognized this right away as an OCD compulsion and did not comply, explaining that I liked "odd"...and he was okay with it...did not freak out and went on with his business...so I know I am not in the "disorder" end of the continuum...but this rapid sudden onset from no tics to complex really concerned me, and having real life experience with OCD behaviors in my family and myself I knew this is not normal...this is not the same kid that I knew a week ago...he has always been a bit "excited", he is way above average in school, he can sit for hours playing legos, does no have a problem focusing or finishing tasks...he is a kid who if he doesn't feel like doing something...won't...he is not a perfectionist, I have to drag him into the tub (germs were my mother's thing, perfectionism mine) and that has not changed. He is a bit more obsessive in his thoughts and seems to be looping a bit...enough for me to notice, but I don't think anyone else would...the tics however...are really noticeable but seem to be bothering me more than him...

 

Googling rapid sudden onset of tics led me to PANDAS...however...no symptoms of strep...but...three weeks ago a gland popped out of his neck, low grade fever, called the doc and was told to treat with motrin...it went away. He has subtle eczema since he was a baby...it has been bothering him more the past few weeks...told to treat with Eucerin lotion...his allergies have kicked in again...but it is the time of year for that...treating with zyrtec...dark circles under eyes are pronounced as they always get with his allergies...

 

I brought him to the doctor yesterday, and basically forced him to give him a throat culture, I laid out my concerns...asked him about PANDAS, he said he knew about it but had never seen it...thought I was nuts...was convinced he was looking only at an allergy attack...until...the culture came back positive...this is only the second time I have had him diagnosed with strep...both times he has not had a single symptom...last time there weren't any tics that I noticed...but he was only 4. When the doctor came back into the room with a positive culture he seemed to take more seriously...he gave me a list of child psychologists, and we started discussing the possible next steps...including a neurologist...

 

He is now on Amoxicillian...obviously, it is very soon, and he is still ticking away...I am waiting for the psychologist to call me back to set up an appointment...I would like to have him evaluated.

 

I guess, what I am looking for here is some advice, specific tests to ask the doctors to perform, things I should and should not be doing (I was told to ignore the tics and am),...I have read through some posts...and recognize, that if this is PANDAS, he on the lower end of the spectrum for symptoms...even with the tics he is functioning fine...but, I know my kid, and I know this is not normal...I am hoping the tics subside after this round of antibiotics, but want to be prepared if they don't.

 

I am also open to talk with other memebers who are in my area and would love any doctor referrals...

 

I appreciate any advice you can give...and if I am way off base with this...please tell me that too...

 

Thank you

--Lisa

[Lisa1971]

Thank you very much...

 

I can say I felt very vindicated yesterday when I forced a test without symptoms, just on a hunch, and it came back positive...even if he still thinks I am nuts, I could not have manufactured a strep infection in my child...and if nothing else, this at least, opened the door for me to request periodic strep tests.

 

My plan is to attack this as agressively as possible, if this turns out to be PANDAS but, being a bit clueless...will need to rely on the experience of others here for the correct steps...

 

 

here are a few possibly stupid questions...

 

Am I correct to assume the best case scenario is the the antibiotics will kill the strep and his tics will subside, and may only flare up again when another strep infection is present?

 

Is there a possible connection between his allergies flaring up, both nasal and skin, and PANDAS? Is the strep triggering these flare up as it is triggering the tics?

 

Since chronic nasal allergies are an issue...are prophylactic antibiotics something to consider, as I read that strep can hide in the sinus' and my kid doesn't present normal symptoms of strep.

 

Should I be making an appointment with a neurologist? If so, what specifically should I want from her?

 

Does the regular pediatrician perform the ASO-Titer and D-NASE tests? (these were just recommended to me) and what will these tests actually tell me?

 

Just as a side note: I am pro-cognitive/behavioral therapies...and until my child's symptoms become out of control and the only option, am not willing to put him on any psychotropic meds. Even if the tics subside, I still think he would benefit from being under the care of a psychologist, if for nothing else, acquiring the tools we will need to combat this if it is going to be a recurring thing...

[heveritt1]

Hi Lisa,

 

I am in Raleigh. I have been on and off of this wonderful forum for a few years now. I usually come on now only when we are having another episode. We have been dealing with this since my son was 3.5 yrs. He turns 7 in a month. I have tried everything, every kind of doctor and would love to share my story (I have typed it in several times). my email address is heveritt1@yahoo.com if you would like to chat over the phone, I can send you my home number. I was lucky recently and changed doctors and come to find out the doctor treats her son for PANDAS, so that helps. Good luck

 

Thank you very much...

 

I can say I felt very vindicated yesterday when I forced a test without symptoms, just on a hunch, and it came back positive...even if he still thinks I am nuts, I could not have manufactured a strep infection in my child...and if nothing else, this at least, opened the door for me to request periodic strep tests.

 

My plan is to attack this as agressively as possible, if this turns out to be PANDAS but, being a bit clueless...will need to rely on the experience of others here for the correct steps...

 

 

here are a few possibly stupid questions...

 

Am I correct to assume the best case scenario is the the antibiotics will kill the strep and his tics will subside, and may only flare up again when another strep infection is present?

 

Is there a possible connection between his allergies flaring up, both nasal and skin, and PANDAS? Is the strep triggering these flare up as it is triggering the tics?

 

Since chronic nasal allergies are an issue...are prophylactic antibiotics something to consider, as I read that strep can hide in the sinus' and my kid doesn't present normal symptoms of strep.

 

Should I be making an appointment with a neurologist? If so, what specifically should I want from her?

 

Does the regular pediatrician perform the ASO-Titer and D-NASE tests? (these were just recommended to me) and what will these tests actually tell me?

 

Just as a side note: I am pro-cognitive/behavioral therapies...and until my child's symptoms become out of control and the only option, am not willing to put him on any psychotropic meds. Even if the tics subside, I still think he would benefit from being under the care of a psychologist, if for nothing else, acquiring the tools we will need to combat this if it is going to be a recurring thing...

[EAMom]

Am I correct to assume the best case scenario is the the antibiotics will kill the strep and his tics will subside, and may only flare up again when another strep infection is present?

 

-Yes, that is a likely situation. (It it possible that certain strains of strep are more likely to cause PANDAS symptoms.)

 

Is there a possible connection between his allergies flaring up, both nasal and skin, and PANDAS? Is the strep triggering these flare up as it is triggering the tics?

 

-IMO, I think it is possible that a low grade strep infection may be making the allergies worse. Also, some folks find that non-strep illness, or possibly allergies (stimulating the immune system) may cause flare-ups. Also, sometimes kids can actually have a sinus infection which is mistaken for allergies.

 

Since chronic nasal allergies are an issue...are prophylactic antibiotics something to consider, as I read that strep can hide in the sinus' and my kid doesn't present normal symptoms of strep.

 

-A lot of PANDAS kids are on prophylactic antibiotics. Azithromycin and Keflex are pretty popular. Usually Amoxicillin isn't quite strong enough. IMO if your child has intracellular strep or strep hiding out in the sinuses a 30 day trial of Azith. (250mg/day for the average size 7 year old) is worthwhile. Then you could go to a lower dose. While some folks do 500mg/weekly my has dd remained at 250mg/day (since last June).

 

Should I be making an appointment with a neurologist? If so, what specifically should I want from her?

 

-It wouldn't hurt to see a neurologist, hopefully one that "believes in PANDAS" (many don't! grrrr) and that is willing to learn if they don't already know much about PANDAS. Seeing the pediatric neurologist helped us in that she agreed with our use of antibiotics (giving some comfort to our nervous ped!). She also ordered an MRI for us, which won't diagnose PANDAS but may be good to rule out other things. Some kids will have an enlarged basal ganglia, but the MRI isn't a good "test" for PANDAS.

 

Does the regular pediatrician perform the ASO-Titer and D-NASE tests? (these were just recommended to me) and what will these tests actually tell me?

 

-Yes, a regular ped can order the titers. IMO, ASO and anti dnase b aren't necessary since your child already has a positive culture. Our dd had positive cultures and full-blown psychotic pandas and her titers were low. Some kids just don't make a lot of titer. "Buster" has a good post "A little bit about ASO titers" which you might find useful. On the other hand, if your child doesn't mind having his blood drawn, it might be interesting to see what they are. We've only drawn titers on our dd 2x, then decided they weren't useful to us. They are useful if your child no longer is culturing positive, as evidence of a prior strep infection.

 

Just as a side note: I am pro-cognitive/behavioral therapies...and until my child's symptoms become out of control and the only option, am not willing to put him on any psychotropic meds. Even if the tics subside, I still think he would benefit from being under the care of a psychologist, if for nothing else, acquiring the tools we will need to combat this if it is going to be a recurring thing...

 

-Many of us on this forum have found advil to be useful. We think it decreases the inflammation of the basal ganglia. Fish oil (omega 3's, DHA) is also recommended to help the myelin/brain healr. Use any psych. drugs with extreme caution. If you do use them keep your dose low and don't use multiple psych. drugs at once. PANDAS kids are very sensitive to psych. drugs. The most important thing is to address the root of the problem (strep, inflammation, abnormal immune response) not just treat the resulting symptoms (tics, ocd, psychotic behavior, anxiety) with psych. drugs. Most on this forum also give probiotics if they are on prophylactic antibiotics. That said, my dd is on a low dose of Prozac (10mg) in addition to Azith, multi, vit, omega 3's, and probiotics. We also did Ibuprofen daily from June until August when she was recovering from her bad PANDAS episode last year.

[EAMom]

edit-double post

[Lisa1971]

EAMom...thank you very much...

 

I have added the Ibuprofen, Omega-3 to the arsenal...along with a saline nasal wash recommended by the pediatrician...

 

I just got off the phone with the psychologist, she is not familiar with PANDAS but asked me to explain it and was very open and interested, and her husband is a psychiatrist so she was going to talk to him do some research. She was concerned saying that his sudden onset of symptoms is very unusual and she is going to squeeze him in next week...

 

 

Regardless, of what my doctors currently understand or believe...I think it is too coincidental to ignore there must be some connection between the strep and the onset of symptoms. If he stops ticking once the strep is gone, then that is proof positive as far as I am concerned...

 

 

Again, I am so glad to have found this site, your information has been invaluable and I am now able to connect the dots and it all makes sense...so now I can take it to the doctors and basically get from them what I know I need....regardless if they accept it or not....but who knows...maybe my son will be their first case and they will be able to learn something and possibly help another child one day with much more severe symptoms...

 

I will say this...for what it is worth...if the tics did not start so suddenly...and had I not found sites on PANDAS which specifically said it is caused by the strep infection, I NEVER would have had the culture done...because he did not have a single strep symptom...and the strep would have gone untreated and really could have done some damage to his heart or kidneys...even if the tics never go away...that is still much better than what could have been...

 

On a positive note...the dark circles under his eyes and the are markedly better...and the eczema is clearing up.

[Lisa1971]

Update...3 days on Amoxicillian, Zyrtec for allergy flare up, Mucinex for cough, Motrin, Omega3. Nasal wash.

 

 

February 15th—8:30am: Tics still diminished is duration and frequency, would say they no longer appear to be complex in nature. Facial, Shoulder, and Arm movements appear to have left. Finger wiggles, elbow bumps, and feet and knee tapping still present separately and much less frequent. Able to remain silent and without ticking while playing for stretches of time. Although he is not quite back to his “normal” self, it seems he would pass as such to someone who was unaware what is going on. Demeanor still remains normal, vocalizing appropriately, possible vocal tics still may be present, but very hard to tell now…as he is always vocal when he plays making car noises and such. Seasonal allergies still present but also seem to be improving. He seems happy and content and is able to entertain himself.

 

4:30pm: Tics limited to finger wiggles or elbow bumps or knee taps on floor, but movements are very subtle now, hands are relaxed and normal now as opposed to him holding them out very rigidly as he had been doing the past two days. Tics are much less frequent and incorporated in activity as opposed to the last two days when they acted as a precursor. He is able to focus and do his reading comprehension homework without any problems...Vocal tics are gone. Allergy (sinusitus) symptoms are also improving, eczema has cleared and there is no more itching. His energy level is back to normal (he was in fast-forward Thursday and Friday). He is no longer obsessing over certain thoughts, and he is back to negotiating with me when he doesn't want to do something (he was unusually cooperative Thursday and Friday--this I will miss ).

 

Things seem to be moving in the right direction...

 

And again...thanks everyone for all of your help, advice, and support...it has made a very uncertain and scary situation a lot more manageable.

[T_Mom]

Hi Lisa,

 

I am so sorry about your scary experience--We also had sudden onset OCD/tic issues, our experience (not to scare you) is that the first time around was "bad" the second time--worse (I did not think it could get worse.)

 

Have you read Dr. K.s website info.? www.webpediatrics.com

We did the steroid burst to flesh out if it might be PANDAS. This we did and it seemed to be a dramatic recovery.

We are using an EPA to DHA split on the omega 3 oil of about 3 to 1...The EPA is actually the one which seems to have had a good effect on my own daughter. We are giving 2000 mg total (combined EPA/DHA) a day. (I know some people on the forum have chosen to get the Flax Omega as they felt the fish oil exacerbated the tics.)

 

We also tried Amoxicillan and she cleared right away each time--then within 2 weeks of being off antibiotics she got sick again and the OCD tics came back. It seems important to clear it from their systems in my daughter's case...now on 7 weeks of Amoxicillan, full strength. Significant improvements with every week so far--

 

All the best to you--it is a journey but there is definite help along the way, you just have to keep playing with the cards to figure out what works for your child,

 

T.Mom

 

 

Update...3 days on Amoxicillian, Zyrtec for allergy flare up, Mucinex for cough, Motrin, Omega3. Nasal wash.

 

 

February 15th—8:30am: Tics still diminished is duration and frequency, would say they no longer appear to be complex in nature. Facial, Shoulder, and Arm movements appear to have left. Finger wiggles, elbow bumps, and feet and knee tapping still present separately and much less frequent. Able to remain silent and without ticking while playing for stretches of time. Although he is not quite back to his “normal” self, it seems he would pass as such to someone who was unaware what is going on. Demeanor still remains normal, vocalizing appropriately, possible vocal tics still may be present, but very hard to tell now…as he is always vocal when he plays making car noises and such. Seasonal allergies still present but also seem to be improving. He seems happy and content and is able to entertain himself.

 

4:30pm: Tics limited to finger wiggles or elbow bumps or knee taps on floor, but movements are very subtle now, hands are relaxed and normal now as opposed to him holding them out very rigidly as he had been doing the past two days. Tics are much less frequent and incorporated in activity as opposed to the last two days when they acted as a precursor. He is able to focus and do his reading comprehension homework without any problems...Vocal tics are gone. Allergy (sinusitus) symptoms are also improving, eczema has cleared and there is no more itching. His energy level is back to normal (he was in fast-forward Thursday and Friday). He is no longer obsessing over certain thoughts, and he is back to negotiating with me when he doesn't want to do something (he was unusually cooperative Thursday and Friday--this I will miss ).

 

Things seem to be moving in the right direction...

 

And again...thanks everyone for all of your help, advice, and support...it has made a very uncertain and scary situation a lot more manageable.

[EAMom]

I wonder if the kids who tic more on the fish oil would do okay on a vegetarian DHA source...they have some that are from algae.

 

Lisa...I wonder if the eczema was somehow strep related? I'm glad your son is making progress!

[Lisa1971]

I wonder if the kids who tic more on the fish oil would do okay on a vegetarian DHA source...they have some that are from algae.

 

Lisa...I wonder if the eczema was somehow strep related? I'm glad your son is making progress!

 

Thanks...he will normally have an eczema flare up when he is otherwised compromised...whether it be sickness or allergy...I'm fairly certain the lump in neck was a strep symptom...then came the eczema...then the allergy flare up...due to the unseasonably warm weather we just experienced causing things to bud and bloom way too early...

 

Now, since when he was 4 he had strep without the bizarre onset of tics...I wonder if it was the combination of all 3 (strep, eczema, and allergy/sinus attack) simultaneously...that set him off? Or if me missing the lump in his neck as a strep symptom and allowing it to brew for so long that caused the episode...

 

From now on, I guess I just have to really pay attention to his eczema, and his glands, as possible indicators...and first sign of anything I will be getting a strep test...

 

How long should I wait after the Amox is done before getting a retest on the strep?

[EAMom]

Hi Lisa,

 

Some folks report that there child will test positive within a week of stopping the antibiotics. However, if that test is negative you should test again 3-4 weeks later to make sure he is really negative.

 

You may need at least one more episode/exacerbation correlated with strep infection to convince your doc to rx. prophylactic antibiotics. Did your doc seem open to that idea at all? Many folks find subsequent exacerbations to be more severe. But, at least you are aware of PANDAS now and know to catch it early.

 

I agree with T. Mom about the steroid burst. It's a useful tool to figure out if it is PANDAS and if IVIG is appropriate.

 

I would also strongly encourage you to get family members cultured to make sure that there aren't strep carriers in the household. My younger (5 year old) dd is a strep carrier and that is a problem for us. Our PANDAS (8 year old) dd will have mild PANDAS symptoms (not full blown) even though she's on Azith. when her strep carrier sister is positive.

 

Did you give your son a new toothbrush and toothpaste? Strep can live on toothbrushes for 14 days so you want to be sure to change them with each course of antibiotics. Also, don't let your son share toothpaste with others.

 

PANDAS kids can also react to vaccines so be careful about those.

[Lisa1971]

I am waiting for my pediatrician to call me back...I'm not sure what his take on PANDAS is...he knew exactly what it was, but admitted to never seeing it before...hopefully he is the type who will be interested in recognizing this may be his first case and pursuing it.

 

I'm going to see if the pediatrician is open to at least keeping him on one or two more concurrent cycles of antibiotics...to give him a good dose until the zyrtec can successfully infiltrate his system again...keeping the allergies in check, is I think, also going to be a key factor since they are also related to the thymus and immune system hyperactivity. Plus...since I just found out he was exposed to strep from his classmate in Dec...chances are it is still bouncing around...so I feel strongly the antibiotics are a good idea for now...I'm not sure if his case warrants permanent prophelactic use yet...since, as you said, this being his first episode...

 

I have switched out my son's toothbrush twice since he tested positive and will switch again when the meds are done...he is an only child and has his own toothpaste...I was going to switch that out once the meds were done also.

 

Now, interesting thing is he did get his chickenpox booster on Jan 26th...after his exposure to strep, after the gland issue popped and then cleared, before the tics, before the allergy attack...but in the midst of the eczema...he did not develop any specific chickenpox reaction.

 

I will also discuss with my ped. the pros and cons of a steroid boost in my son's case...I haven't researched this fully yet...

 

I e-mailed Dr. K with a timeline of events to date and my son's allergy history...the response was less than helpful...he said it sounds like PANDAS to him, he suggested this may not be his first episode...and that the next step was up to me...

 

Again..thanks for your help and my heart truly goes out to all of you with much more severe cases than my son's seems to be.

[michele]

I wanted to let you know in hindsight my son's strep, tics and behaviors came out one week post 12 month vaccinations including chicken pox and pneumoccal. Then again with the five year old shots and after a flu shot for the winter exploded again in tics and obsessive behaviors. It took many episodes to get a Dr. on board for us to do long term antibiotics. Maybe because of his young age they would only wait and see. We had a neurologist watching his progress. At age five the immunologist started the prophylaxis antibiotics. He would only do Pen VK or Amoxil though based on research from NIMH. Sometimes you have to go through many Dr's to find the right one. We now get treated for the seperate symptoms/disorders Tics, obsessions, moods and ADD. A neurologist, psychologist and a psychiatrist, and the ped is writing the script for antibiotics now. Our ped is not up to date on the research and didn't like the posts I pulled off this board. Next I will bring her only journal articles. I would like her to do the steroid burst which Dr. K wrote me an email to try. I may have to go to Dr. K though. He did not think that was necessary but Dr's here don't want to follow his suggestions. As a last resort the IVIG if symptoms get worse. If you live close to a PANDAS researcher try to see them. I may try to get into Don Gilbert ped neurology at Cincinatti Hospital. He has worked with Sweedo and Leckman on PANDAS articles and runs a research lab. We have gone to Florida to Tonya Murphy but she is too far away to treat on a continued basis and won't write scripts over state lines. If you could get your Dr. to contact an expert it may help also.

 

Michele

I am waiting for my pediatrician to call me back...I'm not sure what his take on PANDAS is...he knew exactly what it was, but admitted to never seeing it before...hopefully he is the type who will be interested in recognizing this may be his first case and pursuing it.

 

I'm going to see if the pediatrician is open to at least keeping him on one or two more concurrent cycles of antibiotics...to give him a good dose until the zyrtec can successfully infiltrate his system again...keeping the allergies in check, is I think, also going to be a key factor since they are also related to the thymus and immune system hyperactivity. Plus...since I just found out he was exposed to strep from his classmate in Dec...chances are it is still bouncing around...so I feel strongly the antibiotics are a good idea for now...I'm not sure if his case warrants permanent prophelactic use yet...since, as you said, this being his first episode...

 

I have switched out my son's toothbrush twice since he tested positive and will switch again when the meds are done...he is an only child and has his own toothpaste...I was going to switch that out once the meds were done also.

 

Now, interesting thing is he did get his chickenpox booster on Jan 26th...after his exposure to strep, after the gland issue popped and then cleared, before the tics, before the allergy attack...but in the midst of the eczema...he did not develop any specific chickenpox reaction.

 

I will also discuss with my ped. the pros and cons of a steroid boost in my son's case...I haven't researched this fully yet...

 

I e-mailed Dr. K with a timeline of events to date and my son's allergy history...the response was less than helpful...he said it sounds like PANDAS to him, he suggested this may not be his first episode...and that the next step was up to me...

 

Again..thanks for your help and my heart truly goes out to all of you with much more severe cases than my son's seems to be.