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Posts posted by wembles

  1. My son has been doing really well recently. He is currently on a 30 day course of Azithromycin, and on days 6 and 7 of the course, he was back to 100%! It was amazing. We also started him on Enhansa (turmeric) at around the same time--started low with 150 mg in the morning. When we added a second pill in the evening (for a total of 300 mg/day), his stuttering returned slightly. I'd still call him at 90% as it isn't bad, and none of his other symptoms (fears, OCD, etc.) returned, just the minor stuttering. I have read that Turmeric can increase dopamine levels, which can cause stuttering in some instances, but I am not sure if 300 mg of enhansa would be enough to raise dopamine levels. I stopped giving him the pills today to see what happens, but just thought I'd check to see if anyone was knowledgeable about this. I'd really like to keep him on the enhansa to help with inflammation, but if it is indeed causing the stuttering to return, I'll obviously looks for something else... Thank you!

  2. Hi everyone! I am a speech-language pathologist (SLP) and mom to a son with PANDAS. I, along with one of my colleagues, am putting together a presentation proposal to spread the word to fellow SLPs about PANDAS/PANS and effects on communication. We have put together a survey to gather information for our presentation proposal and would be more than grateful for your participation. (fyi: this will be cross posted in multiple forums!). Thank you so much! https://www.surveymonkey.com/s/2S52C8S

  3. Hi,

    My son has only recently been diagnosed with PANDAS/PANS, and I am still learning. He has been symptom free since September, following a bad flare that lasted from May until the end of August. The doctor we have been seeing did some allergy testing, as he mentioned that the inflammation from allergies can work in conjunction with infections to trigger a flare, so he wanted to minimize the effects from allergies. My son tested positive for some environmental allergies (mold, juniper, hay...2 others I'm blanking on) and peanuts on the skin test, but not the blood. It was suggested we take a half dose of Xyzal daily (an allergy med) and remove all peanuts and tree nuts from his diet. My son had no visible allergy signs at the time (his present as eczema and itchy eyes), so when the pharmacy could not find the med to order, and we had to switch to a new pharmacy who told us it would be a week delay, I wasn't concerned. Until Sunday....something we were around (still haven't determined what!) caused a huge eczema flare. And, my son's eyes are so puffy with dark circles underneath, I asked him if he fell at recess! Turns out they are so itchy he can't stop rubbing them. That long background brings me to...he started a minor flare of his PANDAS symptoms today as well :( Familiar symptoms (stuttering, fears--he cried about losing a penny, having to get his wisdom teeth out (he is 6), that he couldn't find a specific stick on the playground, and baby talk. Much less intense than his last major flare, but going from nothing yesterday, it is quite noticeable today!


    My question: since this flare is clearly brought on by allergies and not an infection, I don't need to start him on antibiotics, right? Our doctor has a prescription of Azithromycin for us on standby that he said to fill if we started to see signs of a flare (to take once a week), but I wouldn't fill that for a flare like this, would I? I did give him a dose of Claritin tonight, since we still don't have the Xyzal. I am hopeful the Claritin will work quickly and we can avoid a full flare...I am just unexperienced and was looking for advice! Thank you!

  4. My son's main symptom when he experiences flares is stuttering--his tends toward "cluttering" (excessive revisions of phrases, pauses in odd places, breathing or swallowing mid sentence, etc.). I'm a speech pathologist, and actually took him to see a stuttering specialist (I did not trust myself to be impartial as his mom!). He received therapy for 2 months, then was dismissed because his speech cleared completely. It stayed clear for 6 months, when he got impetigo and scarlet fever, then had his worse flare ever--cluttering and stuttering combined, arm flapping, excessive questions about size, fears, baby talk. He still hadn't been diagnosed at this point, so just had a 10 day course of amoxicillin, which didn't help his extraneous symptoms much, but did clear up the rash. He had flare symptoms for 4 months, then all clear again.


    I hope for your daughter, like my son, that the stuttering is merely a symptom and will clear when her flare subsides. In the meantime, I'd be happy to share some advice about stuttering, if you'd like to send me a message!


    I also refer to this article, and have been sharing it with fellow speech therapists. Obviously, PANDAS is not the sole cause of stuttering (there are many, and research is continuing all the time), but I feel that it is worth knowing and that speech therapists should recognize this as a possible sign for a referral if they see a client with stuttering combined with other tics or OCD symptoms and/or a history of strep. https://www.aacp.com/pdf%2F1110%2F1110ACP_Letters_Agarwal.pdf

  5. We saw a PANDAS friendly doctor--he was recommended by a couple families here in Denver. Looking at the blood work, I don't see any tests for underlying infections. He seemed very focused on reducing allergic reactions as a start (his reactions are skin based...no runny nose/eyes/etc.).

    I am hesitant to have him on the daily allergy med (his brother reacts with a change in personality to both zyrtec and claritin...gets very irritable), but he hasn't ever been on allergy meds before himself. But at the same time, I want to prevent him from having any more flareups, so I'm willing to try it.

    We have a followup appointment in March, unless we have a flare up, then we go in sooner.

  6. Update: We had our allergy test and blood work follow-up appointment today. I'm not sure I understand what exactly everything that was tested was, but in short: his IgG (subclass 1-4), Thyroid, Anti-Myelin Assoc. Glycoprotein, Vit. D, Vit. B12, C-Reactive Protein, and Antinuclear Antibodies were all within normal limits. His Memory B Cells were low (I have no idea what those are, so need to research). Food allergy blood tests came back normal, but he was positive for nuts on the scratch test. The doctor wants me to pull him off all nuts. Is that a typical interpretation of food allergies, to pull off the food if only one of the tests is positive? I'm just curious as I've never dealt with any allergies myself! He has never had any visible signs of nut allergy. He was also positive for mold, grass, hay, juniper, sagebrush, and russian olive.


    The doctor wants to treat the allergies with xyzal. He did not give him a diagnosis of PANDAS or PANS, but said because of his reactions to the last case of strep, he feels something may be going on. He called in a prescription of Azithromycin for us that he wants us to take once a week if we start seeing his symptoms return. My younger son and I recently had strep, but my older son (who is seeing the doctor) did not. He had very mild return of stuttering, difficulty sleeping, and fears at night (wouldn't sleep in his room, wanted to be in our room with the light on). Those lasted about 4-5 days, then went away (my younger son and I are now done with our antibiotics).


    So, from here just crossing my fingers we don't have to use the antibiotics :)

  7. Hi everyone,

    We have an appointment scheduled for my son next week because of suspicions of PANDAS. He is 5 years old (almost 6), and has a history that last May made us think PANDAS could be an answer. His main symptoms are stuttering, flapping his hands/arms, and baby-talk. We finally made the connection that these symptoms cycle in and around sickness this past May when he was diagnosed with impetigo, followed by scarlet fever. He had never had a strep diagnosis previously, but we did notice the symptoms ebb and flow. Prior to the impetigo/scarlet fever diagnosis he exhibited the worst cycle of stuttering/baby-talk/hand flapping that he's ever had. He was waking in the night fearful of bizarre things (like, he remembered eating sand about a year ago and thought he would get lead poisoning). He kept making us promise we would never move from our house. He became obsessed with asking size questions (e.g., what's bigger than our house? what's the biggest planet? what's bigger than the earth? he would ask these questions over and over, despite knowing the answer and having just asked them). His symptoms seemed to gradually improve over the course of 5 months. He was on amoxicillin for 7 days, then developed a full body rash, so our doctor pulled him off it as a precaution. We used a topical antibiotic for the impetigo, but it still took almost 3.5 months to clear (no, he wasn't on the topical the entire time). In August, he caught a cold (started Kindergarten, so it was inevitable), and for 2 days straight blinked his eyes continuously. The hand flapping also increased dramatically.


    Now the odd part: he is currently completely asymptomatic. His stuttering cleared completely again about a month ago, he has no signs of eye blinking, no baby-talk, no fears, no size questions, nothing. He had a fever last week and still has a cold, and for whatever reason, that seemed to clear up the last remaining hints of any symptoms. We scheduled this doctor's appointment back in August when the eye blinking started, and this was the first opening (it is with a PANDAS friendly doctor). I am unsure what to do...since he is asymptomatic, is there any point in going to the appointment? What could they tell us? Should we cancel and just make another appointment 3 months out again "just in case?"


    I'd love some input from anyone that has been there, done that!


    Thank you!!


    (I updated this in post #9)

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