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Everything posted by Lisa1971

  1. I'm not really sure what to make of this right now...but I got what I needed so I guess I can't complain.. My pediatrician had his nurse call me back...and tell me that he feels he is not "versed" enough in PANDAS to know what is going on, from what he knows of it he doesn't think it would have dissipated this soon...and since my son is getting better...if I still felt this was an "avenue I wanted to pursue"...they would start the paperwork for him to see a Pediatric Neurologist...apparently I cannot simply make the call and get the appointment myself, they would have to do this for me. She tried to get me off the phone to give me time to think about it...but I gave her the name of the pediatric neurologist in my plan and told her to get on it. I personally, don't need another episode to know something is not right. "avenue I want to pursue" I can't help but feel that is code for "although, we think you are overreacting, I am ethically obligated to refer this case to someone who deals with tics, and will make the call if I have to" I guess this is just par for the course...I'll just have to grow some thicker skin. As of this morning his tics were almost completely completey gone...I did notice however...the past two days that the behavior seems to get a little worse at night... It could be up to 6 weeks before the neurologist will see him...so...now, we wait. My husband and I are getting tested for strep today...as a precaution...and I am still waiting on the psychologist to call back...if she doesn't call back by tonight (she was supposed to call last night) I'll call the other one that was in my plan...
  2. 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.
  3. 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?
  4. 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.
  5. 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.
  6. 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...
  7. 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
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