harmony

No he is not on long term antibiotics regularly. He is only on 60+ days of antibiotics now because of the infection. He used to be on prophylactic- but it tore up his gut- even with probiotics (that was 3 years ago). I think we are going to start the prophylactic again after this course. The immunologist ordered those test following a sinus infection that took 3 months of antibiotics to clear up- and plus he was constantly getting strep throat (anywhere from 4-8 times a year). She also reordered another CF test because of constant mucus in nose- he is doing this next week.(we rescheduled this many times but had to cancel because he kept getting sick). I do not even think they tested his throat in the last 2 weeks (last + strep throat culture was mid Nov). I do not think they even biopsied his tonsils when they removed them 2 weeks ago. The Dr.s main concern was his nose- IT WAS REALLY BAD!! The ENT said the most common bacteria found in the sinuses is STREP. Though- my son's 1st sinus surgery 3 years ago was staph. His Neurological problems this school year have been like a saw tooth. Just when you think things are better- it comes right back.

Oh ya- I have records of all apt.s and lab work from the last 2 years (it took me 2 years to realize that I should keep records). Thanks for your advice

Those are the ones I was talking about. It looks like the doctors are on top of it. Did you get test results yet? What do the doctors say about the results? Everything came back normal- these test were done in May 09. Chronic infections have been a problem during the school year for the past 4 years. He has not had recent blood work done though- The Dr.s do not feel a repeat of test are necessary since they came back normal before- but they(ID and immunology) are having him retake a CF (cystic fibrosis sweat test) even though that came back normal. I just don't know what to do - I am so tired of going to the Dr.s ALL time- for only short term fixes- I want my son to be able to have a normal / healthy life (Keep in mind- he has an exacerbation with viral and bacterial infections) !! He is such a good boy- and it breaks my heart when he cries and says "mom, I just want a good life" - between infections, constant Dr.s appointments (which he doesn't mind so much- he hates school), tics, anxiety and OCD- he has had a very tough time.

Clyndamicin- Pediatrician Biaxin- immunologist Amoxicillan - ENT It is the ENT that we have been working with in the last 2 weeks- since he is the specialist that did/is doing the surgeries. Nice guy- but doesn't listen well. Even though he knows the history- he is still insisting on amox. They did not use topical antibiotic, that I know of. He had 2 rounds of IV antibiotic and IV steroids. (one of each in ER and during surgery). The ENT is convinced that the amoxicillan will be effective in eradicating the strep. I have already asked if he could take a sample from the next surgery tomorrow and retest. He said it was unnecessary since the lab work showed sensitivity to amox. I am going to beg tomorrow- I don't see how it could hurt to do a retest. I wish that I knew more about sensitivity testing at the lab. I would feel much better if I knew it was accurate.

Oh, i was thinking about testing IgG levels + IgG subclasses, IgA, IgM...that sort of thing, not so much titers to specific pathogens. Here is a list of what he has had done: Please let me know specific test that you recommend- I do not understand ANY of this blood work "stuff". White Blood count Red Blood count Hemoglobin Hematocrit MCV MCH MCHC RDW Platelet count Absolute neutrophils " " lymphocytes " " monocytes " " eosinophils " " basophils neutrophils monocytes eosinophils basophils Tissue Transglutaminase antibody IGG and IGA Gliadin Antibody IGG and IGA Anachoice screen Immunoglobulin A M G " " subclass G (1-4) Immunoglobulin E T4, free TSH (3rd gereration) Vitamin B12/Folate Strep Pneumonia IGG AB (14 subclasses) Thyroid Peridase and Thyroglobulin antibodies Protein total and protein electrophoresis H. Pylori

Yep, he has had immunological blood work done by Infectious Disease and Immunology. Everything shows negative except H. Pylori and Epstein Barr (and from what I understand- both are common and would not be cause). Is there a particular test you recommend he get done? I will post what types of test he has had done, just give me a minute.... Thank you

I forgot to put - that he has had negative throat cultures in between positive Strep throat.

I didn't know that labs can test for bacterial sensitivities to different types of antibiotics until last week. My sons (age 6) ENT did a culture from the mucus in my son's nose. It came back with heavy growth of Group A strep. The lab also tested the strep against 5 different types of antibiotics to test it's sensitivity level. Does anyone know how accurate this testing is? I am kind of worried- Because they gave him a prescription for ammoxicillin (minimum 60 days) because that is what his strand showed sensitive to- is this enough? 4 month health History Since school started he has had 3 strep throat infections (one was group B ), 4 sinus infections (only cultured 1, +strep A) and regular colds and stomach bugs. It seems as though the antibiotics make him well- but only for a few days- week at a time before he gets sick again. (all this time- has been a neurological roller coaster for him). From mid Nov- Dec. he was put on Clyndamicin (10 days) to fight group B in throat and minor sinus infection from his Ped. It seemed like he was better until 3 days after completion of antibiotics- so we went to immunologist- she gave him Biaxin for major sinus infection (21 day script- only completed 10+- days because it made he VERY sick- Dr. told us to stop meds immediately). He did great for around 7 days after antibiotic until he developed sudden fever and sudden congestion (very odd). This happened on Friday- we waited til Monday- took him into ENT. Monday (JAN 11) - ENT packed his nose w/steroids, vacuumed nose, sent off culture (heavy growth group A) and ordered another CT (last sinus CT- 6 weeks prior- looked pretty good). Tuesday- in ER. Fever 103, so congested couldn't breath at all out of nose, major headache, right eye swelling with drainage, heart rate in 160s and mucus draining from butt. CT reveals no brain or eye damage- infection contained in nose. Wednesday- got another CT- this one 3D- to help with surgery. Thursday- Surgery 6AM. 3 + hours. Cut turbines, septum, ethmoid bone and drained all sinuses and removed polyps and scar tissue (from previous sinus surgery 3 years ago) and removed tonsils. 2 weeks of recovery next surgery tomorrow to remove any debris and drain sinuses again.

Wasnt sure what to put for #2- it was a strep infection. (2 days after positive strep test). I put "no" because It was strep- not virus or cold. Hope I did this right......

I am definitely going to tune in. What can it hurt?

Can they tell if there is strep in the adnoids after they take them out? yep. I would ask your dr. to do a biopsy- just in case he doesn't routinely check.

Years ago, my son showed the choreiform movements all throughout the day (it resembled a "pee pee dance") and at night during the night rages. Now, he only shows them during a fit/rage. I wonder if sometimes the movements actually cause the fits - but other times I am convinced that the fits/rages cause the movements. ?????? I don't know if they are tics or choreiform movements. The neurologist calls them complex motor tics, but the sleep neurologist was the the one who witnessed it in the office and described them as "chorea like movements". I was very relieved when he did them during the strobe light section of an EEG. At least we know it is not a seizure. You can tell that the technician was expecting something to show on the computer, when it didn't he scratched his head and mumbled "whoa". No further explanation was given.

Just wanted to elaborate more on my answers: 1) My son has both the tics and the OCD. The tics have been most frequent lately and takes the longer to go away completely. But the OCD is far more disruptive and disabling. I answered "OCD" 2) He has not been tested for ASO and Anti DNase in many years. He was tested during his first exacerbation (1 week after positive culture) they came back negative. I answered "never been tested" because he was never tested in the correct time range. 3) No one in the family has ever had strep when he did not. He always gets it!! 3 times in last 3 1/2 months. Never mind- I was going to answer these questions- but when I tried to go back to answer them- it said "that I already took the poll" ????????

Feb. 2006 Approx. 2 days after postitive strep test. Took my son to Ped. "Something is seriously wrong with my child, he woke up a completely different kid." He had SEVERE symptoms. Ped. noticed immediately when we walked in the room. She wrote down symptoms, came back 30 minutes later, "You are not going to believe this," and handed me info. from NIMH. She had never heard or seen anything like this before. He had every single symptom on the NIMH list except tics (these started just a few days later). Only months later, a representative from an antibiotic company came to the ped. office to distribute samples and spoke to them about PANDAS, calling it the "new rheumatic fever". Kind of Weird, ha?

It could not be reacting because it is the wrong type of antibiotic. Do you have an immunologist? Our immunologists gets very angry at our pediatrician for giving wrong types of antibiotics for sinus infections. My son was on Augmentin for 2 1/2 months for sinus infection- given by ped.- it still was not better. We went to the immunologist - she put him on another type- cured within 10 days. But I guess it has to hard to treat, if no one knows what it is. I would suggest an ENT or Immunologist. If that doesnt work- it may be dermatology related.

My son (age 6) has constant sinus infections. He has already undergone 1 surgery to clean out sinuses- his whole osteomeatal unit was opaque and filled with Staph. We have declined the second sinus surgery (for now) this surgery would be on the ethmoid bone, it is invasive and very close to the eye w/long recovery time. He had a nose injury (bowed his septum) just 2 months before the first PANDAS episode. His sinuses have not been the same since. He gets PANDAS symptoms with every sinus infection.

With our experience w/ ENT and Immunologist- they do not prescribe the same type of antibiotic for sinus infection as they would for strep. And unfortunately, they are unable to tell what type of bacteria is in the sinuses by a CT. Is there a way to find out without surgery? That would be awesome!!! My son has already had one sinus surgery and the ENT wants to preform a very invasive surgery now- we decided against this.

tatoomom i am so happy that you posted this. It has been 4 years since my sons first episode. He was diagnosed immediately (thank goodness for a ped that did research and found an explanation - my son symptoms were very severe - it was very scary) My husband is out of town often and is not very observant even when he is home:( My sons symptoms have been considerably mild since first episode- my husband doesn't even want to discuss it 99% of the time when I bring it up, he brushes it under the table by going in the other room or working late. and this makes me feel like I am crazy sometimes. then he makes excuses for our sons movements, anxiety and OCD - he has even gone as far as "blame my parenting" I know he does not mean this- this is just his weird way of dealing with it. When symptoms get severe- my husband freaks outs and breaks down crying at night-he gets angry at me and dr.s- "why have they not fixed him???? We need to find NEW doctors. We need answers." I know it is because he loves him so much and it is too painful for him to see sometimes. But then when he is well, my husband "completely forgets" about it and acts likes I am OCD for researching. Yet, he had never been to a immunology, neurology, infectious disease, ENT or physiology appointment with us until last week. Only in the last year has he had moments of understanding, when I feel like we are on the "same page". He even went into to work late to watch the TODAYS show- and then called me up while I was at school to share his excitement. Though he refused to read these posts or saving sammy. I have just came to the conclusion- this is his way of dealing with it. I need to stay strong for all of us. I think people have different ways of dealing with situations, especially when it comes to the health of your child. Some are in denial, some get angry or depressed and some do research. I am so thankful to have found this forum for giving me the support that I need. I wish you and your family the best of luck. Hang in there! You are not alone, you will always have all of us in this forum. (I just wish that I had joined years ago)

My son was diagnosed with PANDAS and Tourettes. Even though he only has tics during exacerbation. Can they not be diagnosed with both? This is the way his Neurologist explained this to us: As long as he fits the criteria (even if the tics are a PANDAS symptoms) his diagnosis will still be Tourettes as well as PANDAS. My sons diagnosis from Neurologist is PANDAS, Tourettes, and OCD - since he meets the criteria for all 3 (even though OCD and tics are ONLY present during PANDAS exacerbation). TSA criteria for Tourettes Syndrome: 1.Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily simultaneously; 2.The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year; and 3.Periodic changes in the number, frequency, type and location of the tics, and waxing and waning of their severity. Symptoms can sometimes disappear for weeks or months at a time. 4.Onset before the age of 18.

Cunningham test is now $400? Wow, I thought it was only $200. The office is closed till mid January- do any of you know if they accept less than asking amount???

GREAT IDEA

It seemed like her hips were hurting, but she was only about 4 years old and not talking. I was alarmed and terrified. But I don't really know if she was unable to make her legs work right or if there was really pain. During episodes My son gets severe knee pain in the mornings and sometimes after sitting on the bus for 1 1/2 hours. The knee pain is normally the wake up call that he is about to get sick - normally within 1-2 days.

I toatlly agree with you- a good psychologist might be able to help. (unfortunately- ours is no longer in practice- and we are having a hard time finding another).

yep, my son is allergic to red 40- he takes pills for everything (because alot of oral suspension meds have red 40 - plus pills dont taste bad) Good luck with everything