Here we go....

[Zs_Dad]

The last few days has been a bit of a roller coaster for my wife and I. Our dd, who just turned 6, returned from a week with her grandparents who reported the start of what we now realize are tics. As I guess with many children, the tics came out of the blue. She has been otherwise healthy and in fact never had a known strep infection. Her tics include a sniffing tic that can occur unbelievably frequently, occasional eye blinking, and most disturbing is a facial grimace/teeth grinding/hand clenching that occurs.

 

The sniffing was probably there for 1-2 weeks. We didn't think much of it, perhaps some seasonal allergies. But then she began with the facial grimacing/teeth grinding/hand clenching. Our first instinct was to tell her to stop doing it. We quickly came to realize that it was entirely involuntary. It's breaks our heart to see her when this occurs and it seem to be happening more frequently. She is this wonderfully energetic happy child who carries a big smile one second...only to follow the next second with this motor tic. Had you not known her you would think she was possessed by a demon when it occurs.

 

The day we noticed the tics we spoke with a pediatrician that tipped us off to possible PANDAS. Although she never had a known strep infection, I myself had a strep pharyngitis 1 month prior and our 4 year old son had a recent strep rash requiring antibiotics. Because she was never symptomatic we never had her on antibiotics...I'm sort of regretting that one.

 

So Labor Day Monday we started her on antibiotics...she's on Cefadroxil bid. The following day we got an appt with Dr. T who felt the PANDAS diagnoses was possible. It was comforting having her seen by an MD familiar with the condition who will hopefully guide her through this. The family all went for labs this morning....hopefully this will shed some light on the situation. Unfortunately, 3 days into antibiotics and no improvement thus far. I'm not sure if that means we aren't treating appropriately, whether this is not strep related, or whether we need to just sit tight and be patient.

 

Our emotions are all over the place right know. I've spent countless hours reading on the topics, reading the other posts on this forum, reading the stories of so many children. It's been extremely helpful to have the resources, but we can't help but think about where this roller coaster is going and when/if/how it will end.....It's hard but we're trying to stick to our usual philosophy that things happen for a reason, and happen for the best.

 

There has definitely been emotional/crying times these days/evenings. I hate waking up hoping that perhaps the tics are gone...only to see them occur within the first few minutes of her waking up. She doesn't seem to be bothered by them, it's mostly us. She started school yesterday and tics at school. Thankfully for now it doesn't draw much attention. Perhaps she suppresses them there, because she seems to do it so frequently at home at night.

 

So our current game plan is antibiotics for 10 days....to be extended to 30days if she doesn't improve. For the time being we are waiting on the labs and ruling out Lyme and mycoplasma. At this point, Dr. T didn't think steroid were in order nor any low dose clonidine for the tics. We are planning on reading up on the book regarding homeopathic strategies for tics suggested on the site. Any other suggestions? Probiotics? Magnesium supplements? Wasn't sure what would be appropriate for a 6 year old.

 

Any suggestions or tips are appreciated.

[dcmom]

Hi - Sorry you are here. So glad you caught this so quickly!

 

Finding the right antibiotic seems to be important for pandas kids. We recently used clindamycin to resolve culture positive strep in my pandas girls, and were very happy with the results. If the current antibiotic doesn't work, I would ask about this....

[butterflymom]

=

Edited October 5, 2015 by tampicc

[airial95]

I would suggest tracking her progress. Until I started writing down my son's symptoms and recording it, I wasn't seeing improvement that was actually there. I think it's because I was too emotionally involved. If I would see him tic once, it broke my heart just as much as seeing him do it 10 times, so I wasn't noticing that he was only ticcing half the time as when he started the abx.

 

I also agree with what has also been said - ibuprofen does help some kids symptoms - it's our miracle drug. Also, it may take time to find the right abx for your daughter. We've been on both azithrimicin and cefdinir. We saw improvements on both, but in different ways. On the azithromicin, we saw more full recovery, but when symptoms came back, they were severe. With the cefdinir, we don't get as many symptom free days, but the symptoms we do see, even when he flares are far more manageable. What I'm trying to say, is each child reacts to the abx differently. You may need to shop around for one that works well for your daughter.

 

Good luck!!

[Zs_Dad]

Hi - Sorry you are here. So glad you caught this so quickly!

 

Finding the right antibiotic seems to be important for pandas kids. We recently used clindamycin to resolve culture positive strep in my pandas girls, and were very happy with the results. If the current antibiotic doesn't work, I would ask about this....

 

I appreciate the advice. We haven't had her formally cultured, just tested for the titers (all still pending). Usually if a culture is done they can check the sensitivities to various antibiotics. Hopefully she improves soon with cefadroxil. If not, it's hard to know if it is because of the antibiotic choice, the bacteria, or just need for more time for the antibody levels to drop. I wish it was more cut and dry. Hopefully the blood tests will shed some light on what is going on. Thank you again for taking the time to share some advice.

[Zs_Dad]

Hi. Your story sounds very much like ours with my son exactly one year ago. . . . he rapidly developed tics and adventitious mvts last year on labor day weekend. It was so scary and so awful. A couple of things that will perhaps encourage you: It really is true that the kids themselves are not bothered by minor tics if they do not cause too much muscle tension. It is definitely much harder on the family members to watch. I do think it is best to not comment and add stress to the child.

 

Only things I can think to try on your own right now are: make sure the child gets extra rest (earlier bedtimes), try using ibuprofen which sometimes helps, can try magnesium supplements or epsom salt baths, give lots of love and do fun things your child likes. And if your child is hyper (my son was running around the house like wild) a trampoline and yoga ball were very helpful.

 

My son was started on cefdinir, and it did seem to help in about a week. We have had several episodes of this since, even in my other child (*sigh*) and it's funny that my son seemed to respond quickly to the antibiotics, and my daughter took two weeks to start improving. I encourage you to try to be patient, insist on longer courses of antibiotics, and trying different ones. I almost wonder if once the antibiodies are at a peak, they are just going to stay for a week or so no matter what you do. .. . and that a PANDAS exacerbation has a bad peak of a week or two and naturally begins to settle, like in Sydenham's Chorea. The abx can definitely reduce the length of the exacerbation, I think though, by getting rid of the triggering infection. I have felt that the 'ceph' drugs (both cefdinir and Keflex) had good results in my son.

 

My heart is with you, and you are SO LUCKY to have landed in the office of a PANDAS expert so rapidly. I hear that Dr. T is brilliant and will work hard to find out what the triggering infections may be. Sounds like strep is the culprit in your house. Same here that my son had no titers, no sore throat, but his sister gets strep throat. It's a bumpy road, but it's gonna be okay in the long run.

 

Thank you tampicc. It's helpful to hear supporting comments from other parents who have gone through this. So far we are sticking with ignoring the occurence of the tics. Although they happen at school, the teachers say it isn't interfering with her experience. We've been trying the ibuprofen, but it's hard to tell if this is helping. I get the sense she isn't tic'ing as much in school (according to her teachers) but when she comes home it really is frequent. I can't yet tell if she actually knows it is occurring. She's been in front of the mirror a few times when it occurs, but I'm not sure if her brain is registering it while it is happening. It's almost as though her brain totally check's out while it happens and then picks up immediately where it left off before the tic started. It would be great if she wasn't ever aware and no one ever brought it to her attention, but at some point it is going to come up.

 

Regarding the magnesium and epsom salt baths. We purchased Natural calm from Whole foods but weren't sure exactly about the dosing. I'm sure it's been discussed on one of these forums. I'll have to do some digging.

 

Thanks again for your input. I hope ur ds is doing well.

[Baylor]

I am sorry you are here also but you gave me some encouragement. I emailed DR T office today and he is willing to do a phone consult and then see us next week. I was apprehensive just going to a new dr but it sounds like this is THE dr To see.

 

Keep us updated on your progress.

[Satara]

You have gotten some great tips on here. You are incredibly lucky to have a doctor who is willing to look into it and try things we are still fighting for that months later. I have two boys one who has Tourettes and one who has some unknown disorder possibly PANDAS. It is incredibly hard for us to see our children struggle in any way we want to fix it. I have run myself ragged with tests/assessments/advocating for him. It's tough on parent/families and siblings. My best advice (that I am still working on) is pace yourself, breathe and set aside time each day to just be with your family. Have fun with your kids it's hard but they need things to be 'normal'. I tend to cry in my car because it seems to be the only quiet place where I'm alone. I feel better once I've let it out and feel like I can keep going.

 

Assemble a team of people you trust. We have a GP/psychiatrist/occupational therapist/naturopathic doctor who specializes in kids with neurological disorders/family and friends who we know love us no matter what.

 

I wish you and your family the best of luck. The people on this site are amazing, they have been a huge help to us.

 

Cynthia

[Zs_Dad]

Improvement at day 7 after antibiotics!!!

 

Wanted to provide our follow-up status for those of you who may have new PANDAS diagnosis. Also will provide details regarding Dr. T’s recommendations, tests, and follow-up. Perhaps this will be helpful for those that are not yet connected with a PANDAS doc.

 

Again, our 6yo DD started with relatively quick onset motor tics (started with sniffling, then began adding some eye blinking and this very unusual facial grimace/teeth clenching/hand clenching). As with most parents, our first response was to tell her to stop doing the movements. But at the end of the first day of her doing it we realized the movements were entirely involuntary. A google search for "involuntary movements in children" brought us to understand the proper term was a "tic." Our first evening of research on tics made gave us information on the spectrum of tic disorders....from transient tics of childhood to tourette's. We hoped that perhaps this was just transient tics of childhood and was encouraged when reading that 20% of school aged kids will get them and just grow out of them. At that point we weren't clued into PANDAS.

 

The following day I spoke with a recommended pediatrician who told us about PANDAS. Especially since my son and I both had strep about 4-6 weeks prior. I had strep throat and he had a perianal strep rash. Our DD never actually had any symptoms and was never treated (nor was my wife…now I wonder if we did if this never would have occured). The pediatrician recommended beginning Cefadroxil and gave us the name of Dr. T who thankfully is in the same state as us.

 

We saw Dr. T the following day and he felt the symptoms were consistent with PANDAS. He was extremely knowledgeable, does great with the children, and spent loads of time talking to us. At this point we had tons of information (from the internet and pediatrician) but not really sure how it all fit in for our DD. He gave us his experience with how other children have done, what the spectrum of severities are and the treatments that are available. He felt our DD was a 2/10 severity. He did say that with PANDAS future relapses can occur with increased severity. We were directed to obtain blood tests (whole family) and continue the antibiotics. Regarding the tics, everyone agreed we should just ignore them.

 

So our DD began antibiotics and we waited. The most difficult part was for my wife and I, our DD had no clue she was even tic'ing. The biggest challenge was waking up and hoping that the tics would miraculously stop, and for days it didn't. Thanks to this wonderful forum we were encouraged to wait patiently and add some adjuvant therapies (magnesium and probiotics). We also cleaned up her diet and improved her sleep time (couldn’t hurt).

 

The evening of Day 6 on antibiotics was when I noticed the first signs of improvement. My DD would do the facial grimace/teeth clenching/hand clenching at times of frustration or excitement. And every time I would come home she would run to the door in excitement...smile...smile...smile...facial grimace. I came to accept it. But finally in the evening of Day 6 I came home and she greeted me without the grimace!!!

 

Over the next 24 hours she improved markedly. The facial grimacing/teeth/hand tic stopped but she continued to blink and sniffle (albeit less frequent). And then the blinking stopped. And then the sniffling slowed down. Yesterday she perhaps tic's a few times all day. I described to Dr. T how it was interesting how the tics came on in a specific sequence and then regressed exactly backward. He said many parents describe the exact same thing. Almost like playing a movie backwards. Perhaps related to the mechanism of why this occurs.

 

The labs drawn for everyone was as follows:

DD (PANDAS): CBC, Lyme titers, Pneumococcal titers, IgG levels, Mycoplasma titers, Vitamin D, Ceruloplasmin, Ferritin, ASO, Streptozyme, Anti-DNAse B strep antibodies

DS/wife/myself: Mycoplasma titers, streptozyme, Anti-DNAse B strep

 

We followed up with Dr. T yesterday to review our labs and come up with a game plan. He felt our DD falls into the typical scenario of PANDAS, both by history, exam and lab values. He commented that the lab results were consistent with what he sees in 70-80% of PANDAS kids.

 

Regarding our long term plan, Dr. T recommend prophylactic antibiotics perhaps until her teen years. We will begin with the antibiotics for now and hope to do some research on this forum to see what others have done. It’s difficult to think about keeping someone on antibiotics for perhaps 10 years.

 

In asking Dr. T about what to expect…he said relapse is likely. He said others have noted that when the relapse occurs the symptoms are more severe, but not necessarily. He hopes that the antibiotics will decrease the likelihood.

 

For our DS, he felt that he is at risk of a PANDAS. He has seen siblings both develop it. Although our DS is asymptomatic, he just suggested we keep a close eye on him for any similar symptoms. No prophylactic antibiotics.

 

My wife and I have begun a short course of antibiotics to clear our carrier states.

 

So we are extremely grateful for the 95%+ recovery within 7-10 days after antibiotics. We are thankful for all the information and all of you how have shared your experiences on this.

 

Let’s hope that in the near future they have a better understanding of PANDAS. I wouldn’t be the least bit surprised if some day they come to realize that many neuropsychiatric conditions are in fact post-infectious in etiology.

[butterflymom]

=

Edited October 7, 2015 by tampicc

[Zs_Dad]

Ugh...tics are back (but different)

 

So after a 95% improvement after 7days of antibiotics we thought we were good to go. Our DD stayed relatively tic free, especially the most unusual of tics (facial grimace/teeth clenching/hand clenching). She developed a rash on the neck and scalp around the time she improved. We were all wondering if perhaps it was the antibiotics and a drug allergy. Ugh, it turned out her and her brother had lice. We treated both of them with the Rid shampoo and the next few days she started increasing the frequency of her tics. She was originally put on a 10day course of antibiotics and then was transitioned to a twice weekly course of azithromycin.

 

For the last week we have been trying to identify the possible triggers (possible food, environmental allergans). So frustrating and difficult to figure it out. Today, as recommended, she received another chemical shampoo for the lice and the tics this evening seem much increased.

 

Ugh....not sure if we should put her on full course of antibiotics for 30 days or whether the increase relates to the chemical exposure of the lice shampoo.

 

Also plan on getting some allergy testing done to see if perhaps something in the home (mold?) may be a contributing factor.

 

Anyone have similar triggers after these types of exposures? Value in longer full strength course of antibiotics?

 

 

 

Improvement at day 7 after antibiotics!!!

 

Wanted to provide our follow-up status for those of you who may have new PANDAS diagnosis. Also will provide details regarding Dr. T’s recommendations, tests, and follow-up. Perhaps this will be helpful for those that are not yet connected with a PANDAS doc.

 

Again, our 6yo DD started with relatively quick onset motor tics (started with sniffling, then began adding some eye blinking and this very unusual facial grimace/teeth clenching/hand clenching). As with most parents, our first response was to tell her to stop doing the movements. But at the end of the first day of her doing it we realized the movements were entirely involuntary. A google search for "involuntary movements in children" brought us to understand the proper term was a "tic." Our first evening of research on tics made gave us information on the spectrum of tic disorders....from transient tics of childhood to tourette's. We hoped that perhaps this was just transient tics of childhood and was encouraged when reading that 20% of school aged kids will get them and just grow out of them. At that point we weren't clued into PANDAS.

 

The following day I spoke with a recommended pediatrician who told us about PANDAS. Especially since my son and I both had strep about 4-6 weeks prior. I had strep throat and he had a perianal strep rash. Our DD never actually had any symptoms and was never treated (nor was my wife…now I wonder if we did if this never would have occured). The pediatrician recommended beginning Cefadroxil and gave us the name of Dr. T who thankfully is in the same state as us.

 

We saw Dr. T the following day and he felt the symptoms were consistent with PANDAS. He was extremely knowledgeable, does great with the children, and spent loads of time talking to us. At this point we had tons of information (from the internet and pediatrician) but not really sure how it all fit in for our DD. He gave us his experience with how other children have done, what the spectrum of severities are and the treatments that are available. He felt our DD was a 2/10 severity. He did say that with PANDAS future relapses can occur with increased severity. We were directed to obtain blood tests (whole family) and continue the antibiotics. Regarding the tics, everyone agreed we should just ignore them.

 

So our DD began antibiotics and we waited. The most difficult part was for my wife and I, our DD had no clue she was even tic'ing. The biggest challenge was waking up and hoping that the tics would miraculously stop, and for days it didn't. Thanks to this wonderful forum we were encouraged to wait patiently and add some adjuvant therapies (magnesium and probiotics). We also cleaned up her diet and improved her sleep time (couldn’t hurt).

 

The evening of Day 6 on antibiotics was when I noticed the first signs of improvement. My DD would do the facial grimace/teeth clenching/hand clenching at times of frustration or excitement. And every time I would come home she would run to the door in excitement...smile...smile...smile...facial grimace. I came to accept it. But finally in the evening of Day 6 I came home and she greeted me without the grimace!!!

 

Over the next 24 hours she improved markedly. The facial grimacing/teeth/hand tic stopped but she continued to blink and sniffle (albeit less frequent). And then the blinking stopped. And then the sniffling slowed down. Yesterday she perhaps tic's a few times all day. I described to Dr. T how it was interesting how the tics came on in a specific sequence and then regressed exactly backward. He said many parents describe the exact same thing. Almost like playing a movie backwards. Perhaps related to the mechanism of why this occurs.

 

The labs drawn for everyone was as follows:

DD (PANDAS): CBC, Lyme titers, Pneumococcal titers, IgG levels, Mycoplasma titers, Vitamin D, Ceruloplasmin, Ferritin, ASO, Streptozyme, Anti-DNAse B strep antibodies

DS/wife/myself: Mycoplasma titers, streptozyme, Anti-DNAse B strep

 

We followed up with Dr. T yesterday to review our labs and come up with a game plan. He felt our DD falls into the typical scenario of PANDAS, both by history, exam and lab values. He commented that the lab results were consistent with what he sees in 70-80% of PANDAS kids.

 

Regarding our long term plan, Dr. T recommend prophylactic antibiotics perhaps until her teen years. We will begin with the antibiotics for now and hope to do some research on this forum to see what others have done. It’s difficult to think about keeping someone on antibiotics for perhaps 10 years.

 

In asking Dr. T about what to expect…he said relapse is likely. He said others have noted that when the relapse occurs the symptoms are more severe, but not necessarily. He hopes that the antibiotics will decrease the likelihood.

 

For our DS, he felt that he is at risk of a PANDAS. He has seen siblings both develop it. Although our DS is asymptomatic, he just suggested we keep a close eye on him for any similar symptoms. No prophylactic antibiotics.

 

My wife and I have begun a short course of antibiotics to clear our carrier states.

 

So we are extremely grateful for the 95%+ recovery within 7-10 days after antibiotics. We are thankful for all the information and all of you how have shared your experiences on this.

 

Let’s hope that in the near future they have a better understanding of PANDAS. I wouldn’t be the least bit surprised if some day they come to realize that many neuropsychiatric conditions are in fact post-infectious in etiology.

[P_Mom]

I would attribute the increase to nothing more than decreasing the abx and switching to Azith 2x a week.(or strep exposure) Since she has regressed after removal of full strenght abx, it is clear she needs to be on them longer. In my opinion, PANDAS kids should be on full dose abx until they can decrease to prophylactic dose without a return of PANDAS symptoms. She is clearly not there yet.....the PANDAS is very recent and if her blood work fits typical PANDAS...then she porbably has high titers still. Also, there are many strains of strep resistant to Azith. Resistant strain were found in the 90's in the NE and I am sure by now the resistance has grown to include more strains and more parts of the country. Around here...(PA)...I have seen Azith fail way to many times for strep. Happened in my own home.

 

If I were you I would get her back on full dose abx asap. (not Azith....or Biaxin) If you are working with Dr. T...ask for Augmentin or Keflex.

[P_Mom]

sorry...double post.

Edited September 27, 2011 by P.Mom

[airial95]

I agree with Pmom that she may have been dropped dosage too soon. For our son, with each episode, we don't see significant remission with less than 30-90 days at full dose (although we see improvement within the first week.) In our case, however, we have gone back and forth between azith and cefdinir, both have worked for us, although he improves differently on each of them.

 

Also, consider that she may have also had a reaction to the lice or the shampoo. Many folks have described a flare in symptoms when their child is having an allergic reaction. The rash may have been a mild allergic reaction. It's just a thought.

[beeskneesmommy]

It is not unusual that it can take the run of 10 days for the tics to start to subside. When using Cephalexin or others in the past when my son was very little and at the onset of tics, he did not improve within the first several days, but at the end of the run of abx. Later, when using Azith or Cefdinir, he bagan improvement very rapidly, within the 1st 3 days. Not sure if it was the type of abx or the age difference when they were used or perhaps where he was in the PANDAS journey.

 

After his initial dx at age 2.5, my son became very ill with acute exacerbation of PANDAS at age 4. This was after 1.5 years of short term abx used to treat Strep infections. He should have been on long term, ongoing abx from the start. However, since his acute onset at this time last year, thru a few different abx choices (daily) and in depth testing for co-infections with Dr. Bouboulis in CT, Our son is close to 100% and has been asymptomatic for 2 months with only a couple of 1 day "dips" here and there.

 

Omega 3's are known to reduce tics over time. We use Omega 3 Gummy bears and try to get our DS5 to eat wild fatty salmon 1-2 x wk.

 

This really sounds like PANDAS, especially with sudden onset on tics after none the 1st 6 years of her life (I think I got that right). When tested for co-infections (Lyme & Bartonella) was the regular western blot utilized ot does Dr. T use a private lab with more thorough testing (like IgeneX)?

 

Dr. T (if I am thinking of the same Dr. T) is a well known PANDAS specialist and I would assume that you are in good hands. best to you and your family and don't give up hope - this can be beaten! -Kath