Clare

For 2+ months, my 11- year old son had a constant, debilitating cough. It was sudden-onset in March 2011. After all sorts of testing and various meds, his cough was finally diagnosed as a tic. He stopped the constant coughing by late May and had no cough, at all, by mid June. We believe that his coughing finally stopped as a result of abx and clonidine. Here's our story. On Thursday, March 3, 2011, my previously healthy DS11 came home from school saying he didn't feel well and that his history teacher had even commented that he looked extremely pale and asked if he was feeling okay. I kept him home from school the next day because he still looked very pale, almost blue. He was no better on Saturday, March 4, 2011, my DH took him to the pediatrician...no diagnosis other than "a virus". From there it went downhill, fast. On Monday, March 7, he started coughing and for two months he did not stop coughing...every 10-20 seconds all day long. It was a racking, unproductive cough. He couldn't go to school not only because he couldn't control it but his body ached from the constant coughing...he couldn't reach for anything or lift anything heavy because his ribs hurt so much. He also developed reflux as a result of the coughing. Then, one of the doctors suggested breathing techniques to combat the cough, the result was that he starting swallowing air and his cough turned into burping....all day long. That was in late April/early May. Anyway, our pediatrician seemed to think I was the problem since I insisted on taking him to one specialist after another. Our pediatrician was definitely frustrated-- during one visit, she ignored my presence and told my DS to "just stop coughing", prescribed muscle relaxers and suggested that "mom might benefit from these, too." The pediatrician also told me that I should "get used to the coughing and that it is now a new way of life for my DS". I couldn't believe what I was hearing. I told her that i absolutely refused to believe it. I was shocked, upset, defeated, furious, disappointed, stunned...need I say more. My son's symptoms were: sudden onset of cough...coughing all day long, stopped the moment he went to sleep and started the moment he woke up. (His cough became so bad that he developed reflux. The m.d. tried to show him some breathing techniques, but, the result was he learned to swallow air and his cough morphed in burping, aka aerophagia.) crazy nightmares/sleepwalking/sleeptalking (I was up with him sometimes 5-7/night) had a need to "stomp" while taking a shower silently repeats sentences without realizing it extremely sensitive to light & sudden/loud noises quick to anger afraid to be alone on another floor of our house; afraid to sleep alone major problems with fine motor skills freaking out over dog hair (we have a big, yellow lab that sheds everywhere) I spent two months (March & April) ruling things...my son was scoped, xrayed, asthma/allergy tested, upper GI, pulmonary function, the list goes on. He was prescribed steroids, inhalers, cough suppressants (made his cough worse), antibiotics (azith, augmentin, amoxicillin, keflex, rocephin)...you name it. He was seen by three ent's, an er visit, a ped gi, a pediatric pulmonologist, three asthma/allergists, a speech language pathologist, two different psychologists, and a ped psychiatrist. His strep titers were only slightly elevated, he never tested positive for strep even though I had him in the ped's office many times in the 6-8 months prior to March. Whooping cough test came back negative. By late April, I had hammered away at the pediatrician enough to convince her that my ds cough/burp could be a tic and that it might be PANDAS. At the same time, I went to a new allergist who, thankfully, didn't rule out the idea of PANDAS when I suggested it. He also found that along with seasonal allergies, my son is highly allergic to dust mites. He thinks that my son's allergies might have triggered his immune system to have a PANDAS "response" and recommended that we seriously consider immunotherapy. (We are still on the fence about that.) So, by the end of April, my ds began taking Keflex (cephalexin), singulair, nasonex, and clonidine (for the tic). After being on Singulair for two weeks, I was convinced that he was suffering from the side effects...he was angrier than ever, seemed to be getting more depressed, sleepwalking a ton...so he stopped taking singulair. He continued with the abx and clonidine and by the second week in May, my ds was able to go back to school...no cough!!!! I should add that in late May, my ds was diagnosed with a raging ear infection in both ears. Since he had already been on a hefty dose of antibiotics, he received shots of Rocephin. By the end of June, my son was off all meds. He has been completely healthy until early October, when he complained of a sore throat and started, again, with "the cough". Our new, "Pandas-friendly" pediatrician started him on abx, immediately, and he was back in school after 3 days. Cough was gone. So far, so good. I hope this helps.

We got the dust mite resistant casings for all of us! Plus, we have a humidity monitor in my son's room. We do keep our windows closed all year long, although it drives my husband crazy. We have been renting our house since we moved here two years ago and my son's bedroom has carpeting. We recently decided to buy this house so one of the first things we are going to do is tear up the carpeting. Thanks for the words of wisdom. It does take a village.

Clare, My son also developed cough tic following Strep in the Spring- it was the one thing that got my Peds on board that PANDAS was a possibility?? That and he had so many sudden onset motor tics it made Peds crazy just to be in the same room with him!! He took 90 days of high dose Azithro and the cough ticccing and other motor stopped within days! Ever changing, non debilitating OCD behaviors persist but improving on SSRI. Has been on Prozac for 10 weeks, now. Tolerating well with improvments. Only side effects has been night time teeth grinding. We have never done Singulair- for reason stated in last post- Allergist doesn't like it nor recommends it. He only takes Nasonex and Zyrtec as needed which he tolerates fine. If your child suffers dust mite allergies- make sure you have dust mite resistant pillow and mattress covers, no stuffed animals in room and wet dust room weekly. It will make a big difference in their allergy smptoms. Also, open windows in house are a no, no. My allergist told me we are not going to be the open the windows for fresh air type family. Go directly from heat to air and vice versa.If we open windows- we pay the price- not worth it. If we try- my entire household is sniffing and snorky in the morning. All reaching for the Zyrtec Sounds like you went through a similar he!@ that we did last Spring- glad your son is doing better. Although, I had a supportive Peds that "took a leap of faith" with me. That, in itself, was a life saver as your story points out! As stated in last post- if your son is highly allergic to multiple things- allergy shots are the bomb. If not, kids can usually be med managed. Especially, if it is mainly dust mites- environmental changes can have a strong impact on that.

I am obsessed, too. How can you not be? Every time my son coughs, I freeze. Every time his pupils seem unnaturally dilated or he walks around stomping/clapping a pattern, I freeze. In early March, my son suddenly started coughing...a dry, racking, unproductive cough...all day long, for two months, every 10-20 seconds. Our pediatrician seemed to think I was suffering from Münchausen syndrome by proxy or hysteria. So does my husband, friends and family. During one visit to the pediatrician, she told my son to "just stop coughing", prescribed muscle relaxers and suggested that "mom might benefit from these, too." I was shocked. Then, I thought maybe she is right. I took one. It didn't help because then I was worrying about whether I would miss some new symptom that would help us figure this thing out. I guess that was obsessive, too. By early May, the pediatrician finally allowed that my ds cough could be a tic and that he might have PANDAS. The good news is that he is doing fine, now. No cough. Was I obsessed enough at the time, I think not. But, on the other hand, we all need a break. Whether it's a girls night out, or a good book. Actually, I just remembered, I did take a break in early April. How could I forget. I went for a girls weekend at a spa to celebrate a dear friend's birthday and upcoming wedding. My friend is a young widow engaged to a young widower, both with young children. It was a miracle that they both found each other. There was a whole crew of us and we couldn't wait to celebrate! I arrived at the spa on Saturday, we had a great time on Saturday night, and then as we were sitting down to breakfast on Sunday morning, my mother called with the news that my father (who is the picture of health) had suffered a major heart attack. The good news is that he survived and is as spry as ever. Life is full of twists. A great night at a spa with friends, a near death experience for my father, that was enough of break for me. I couldn't wait to get back to my son!

Sorry...don't know why my reply didn't "post"... this may be too much info...but here's our story... On Thursday, March 3, 2011, my previously healthy DS11 came home from school saying he didn't feel well and that his history teacher had even commented that he looked extremely pale and asked if he was feeling okay. I kept him home from school the next day because he still looked very pale (not hard since he is very fair...red hair/blue eyes). He was no better on Saturday, March 4, 2011, my DH took him to the pediatrician...no diagnosis other than "a virus". From there it went downhill, fast. On Monday, March 7, he started coughing and for two months he did not stop coughing...every 10-20 seconds all day long. Of course, he couldn't go to school not only because he couldn't control it but his body ached from the constant coughing...he couldn't reach for anything or lift anything heavy because his ribs hurt so much. Then he developed reflux as a result of the coughing. Then, one of the doctors suggested breathing techniques to combat the cough, the result was that he starting swallowing air and his cough turned into burping....all day long. That was in late April/early May. Anyway, our pediatrician seemed to think I was suffering from Münchausen syndrome by proxy or hysteria since I insisted on taking him to one specialist after another. Our pediatrician was definitely frustrated-- during one visit, she ignored my presence and told my DS to "just stop coughing", prescribed muscle relaxers and suggested that "mom might benefit from these, too." Finally, after my DS had been out of school for 3 weeks, I asked our pediatrician to sign off on a homebound education plan. She spoke with the school guidance counselor who then canvassed my son's teachers. The conclusion was that because he was such a good student that he would be able to catch up. Plus, the pediatrician said that she didn't want to see my DS further isolated from his friends and the sooner he got back in the routine of going to school, the better. So, she would not sign off on the homebound education plan which meant we had to wing it. (Fortunately, my son's teachers were a great help during this time.) The pediatrician also told me that I should "get used to the coughing and that it is now a new way of life for my DS". I couldn't believe what I was hearing. I told her that i absolutely refused to believe it. I was shocked, upset, defeated, furious, disappointed, stunned...need I say more. The upshot was my DS was designated as a "truant" from school. So, I worked closely with the school to get his attendance record updated with "excused" days for doctor's visits but when I asked our pediatrician to sign off on other days (e.g. out of school on a Friday but saw the doctor on Saturday), she wouldn't. By early May, I had hammered away at the pediatrician enough to convince her that my ds cough/burp could be a tic and that he might have PANDAS. At the same time, I went to a new allergist who, thankfully, didn't rule out the idea of PANDAS when I suggested it. He also found that along with seasonal allergies, my son is highly allergic to dust mites. He thinks that my son's allergies might have triggered his immune system to have a PANDAS "response" and recommended that we seriously consider immunotherapy. (We are still on the fence about that and will start his allergy meds...zyrtec, nasonex, nasal rinse... before the fall allergies get into full swing.) So, in late April, my ds began taking Keflex (cephalexin), singulair, nasonex, and clonidine (for the tic). After being on Singulair for two weeks, I was convinced that he was suffering from the side effects...he was angrier than ever, seemed to be getting more depressed, sleepwalking a ton...so he stopped taking singulair. By the second week in May, my ds was able to go back to school...no cough!!!! I should add that in late May, my ds was diagnosed with a raging ear infection in both ears. Since he had already been on a hefty dose of antibiotics, he received a daily shot, for three days, of Rocephin( Ceftriaxone). The good news is that my son finished the year out with all A's and was promoted. The day school ended, we switched to a "pandas-friendly" pediatrician! By the end of June, my son was off all meds. So far, so good. He still has some residual anxieties and I was finally able to get him into our local child/family psychiatric group in late July. While they were reluctant to agree about the PANDAS diagnosis, they agreed that he demonstrated borderline OCDish behavior and had some anxiety issues. The md felt my ds may see some benefit from an SSRI and CBT. We are due to go back next week to discuss. My son's PANDAS symptoms were: sudden onset of tic...coughing all day long, stopped the moment he went to sleep and started the moment he woke up. (His cough became so bad that he developed reflux. The m.d. tried to show him some breathing techniques, but, the result was he learned to swallow air and his cough morphed in burping, aka aerophagia.) crazy nightmares/sleepwalking/sleeptalking (I was up with him sometimes 5-7/night) had a need to "stomp" while taking a shower silently repeats sentences without realizing it extremely sensitive to light & sudden/loud noises quick to anger afraid to be alone on another floor of our house freaking out over dog hair (we have a big, yellow lab that sheds everywhere) So, basically, I spent two months ruling things...my son was scoped, xrayed, asthma/allergy tested, upper GI, pulmonary function, the list goes on. He was prescribed steroids, inhalers, cough suppressants (made his cough worse), antibiotics (azith, augmentin, amoxicillin, keflex, rocephin)...you name it. He was seen by three ent's, an er visit, a ped gi, three asthma/allergists, a speech language pathologist, two different psychologists, and a ped psychiatrist. His strep titers were only slightly elevated, he never tested positive for strep even though I had him in the ped's office many times in the 6-8 months prior to March. Whooping cough test came back negative. Although, the one thing he has still not been tested for is Lyme. How did I miss that one? The only diagnosis was "vocal cord paresis" (observed in early March; has since healed; related to all this?) and allergies (seasonal & dust mites). Of course, I am very nervous about the fall allergy season. I am also wondering about Lyme and may get him tested, if it's not too late given all the antibiotics he has taken. Plus, I am very suspicious of the role of the DTap booster and flu mist he received last fall. Maybe the vaccines, seasonal & dust mite allergies, and exposure to strep all contributed to his PANDAS episode. If his PANDAS flares up again this fall, even while taking Zyrtec and Nasonex, we may start the shots rather than try Singulair again. (By the way, I should have mentioned my son is a twin. His twin sister is rarely sick...she had the same vaccines, at the same time and she does not have any allergies.) So, this has been a long way of answering your post. I believe that my son, almost from the get-go, suffered the side effects of Singulair. I am glad we stopped the Singulair and continued with the Zyrtec and Nasonex along with the Clonidine and antibiotics. I think that is what stopped his tic.

This was really, really helpful. Thank you so much for typing all this out for me. It makes me feel better about the treatment plan the allergist outlined (minus the Singulair). I have been overwhelmed since yesterday trying to sort out everything I just learned. Thanks again!

Thanks for the heads up...we are considering starting Prozac for my DS!

Has anyone seen any research on a connection between PANDAS and the DTaP booster and/or flu mist? Here is our story...my 11 year old son has always been a normal, healthy, active kid. He received the DTaP booster and flu mist in early October 2010. Beginning in late October 2010, I found I was taking him into the pediatrician's office at least once a month with suspected strep but the test results were always negative. Five months later, on March 4, 2011 he didn't feel well, again, we took him to the pediatrician...again, nothing. Then, the next day he began to cough and he did not stop coughing for almost two months. He had a racking cough that occurred every 10-20 seconds from the moment he woke up until the very moment he fell asleep. Nothing relieved his cough and it was so violent that, to make matters worse, he developed awful reflux. As a result, he was out of school for almost 2 1/2 months. He saw every kind of doctor (allergist, ent, gi, speech pathologist, psychologist)and he had a multitude of tests including an endoscopy/bronchoscopy, upper gi, chest x-ray, blood work for elevated titers, and asthma testing. He was on a ton of medications ranging from antibiotics to steroids, allergy meds, asthma meds, cough suppressants, muscle relaxers, you name it, and finally, our pediatrician thought it might be a tic and prescribed clonidine. Anyway, by the end of May he was back in school and was able to finish out the school year. I believe it was the clonidine and antibiotic shots that finally did the trick but I can't be sure. None of the doctors were willing to say it was PANDAS but I am convinced he had/has it. Now, I am beginning to suspect a connection between the DTaP booster and/or the flu mist. I was wondering if anyone has seen any research that looks into this?