AlwaysWorriedMom

I’m having a crisis with my son and nobody EVER responds to my posts. I don’t understand this website, and I give up on everything. I give up on life at this point.

Can anyone advise me what tests my son should do before he gets IVIG? I know it’s crucial to make sure he doesn’t have any hidden infections as that may affect the efficacy of IVIG, and I’m not knowledgeable enough about this to figure out which exact tests need to be done beforehand, and what the results mean.

My son (almost 7.5) has tics only PANDAS (no OCD). We live in Canada and were planning to go to the US for IVIG but now I’m reading some people are saying PEX is better for tics and IVIG is better for OCD. Any insight would be greatly appreciated! If we do go with IVIG what’s a better dosage - 1.5g/kg or 2g/kg? Seems that PANDAS doctors have different opinions on this.

We tried it for about a year and a half and made zero difference for our son. We tried many supplements and dietary changes, and the only time we ever had any improvement was with antibiotics.

Wow really??? Not a single response? Thought I’d get some help here but I guess not.

One more thing...we gave Advil for several days which has always helped significantly, and this time it hasn’t helped at all. Maybe because his inflammation level is normal right now?

Oh yeah forgot to mention that his blood tests also showed low leukocytes, which from my understanding is related to immunity

Background: My 6.5 year old son started having nonstop tics last July, along with emotional breakdowns. This went on every day for 3 months until finally a doctor agreed to try antibiotics, and 48 hrs in the tics were gone. We did 10 days of amoxicillin. He had done blood tests right before we started the antibiotics and his ASO was 296 and ESR (inflammation) was 12. He did another two blood tests, one a month after antibiotics and the next one was another month after that. Results were (respectively): ASO: 236 ESR: 18 ASO: 250 ESR: don’t know 3.5 months go by with pretty much no tics at all. Then in January he started a mouth tic and it was getting worse day by day. He also had some separation anxiety and emotional breakdowns. After a week I took him for blood tests and a throat swab and he was positive for strep. ASO was 340 and ESR was 22. He starts another 10 days of amoxicillin. Tics go away again after 48 hours. He had no symptoms of strep other than the tics. Then in the spring right after Covid starts, he has a flare up. His doctor puts him on treatment dose of augmentin to prevent infection and to help lower inflammation. During the summer he does much better but has two flare ups - both times when he lost teeth and had new teeth pushing through the gums. But for the most part, barely any tics or some days none at all. Which brings me to now. He’s back at school. About 4.5 weeks ago the tics start up again, slowly at first, until last week he started a cough that’s literally nonstop. Like every 3 seconds. Normally I would suspect strep but I didn’t even consider it because he was taking antibiotics. But then my husband was complaining of a sore throat and was convinced he had strep. I thought it was too coincidental so I got a referral for a throat swab and blood test. Because of Covid our hospital isn’t doing throat swabs, so we could only do the blood test. Results came back - ASO was 285 and ESR was 8 (which is in the normal range). So it’s not a crazy high number but it is above 200 so consistent with a recent strep infection. Since he was already on augmentin his doctor prescribes clindamycin for 10 days. My husband also started antibiotics, but it took 3 days for him to feel any better. We’re now on day 6 of clindamycin and my son is worse than ever. So I’m really confused about what’s going on. I truly believe he has PANDAS because everything else has been consistent with it, but why isn’t the antibiotic helping this time? And why was his inflammation normal if he’s having a major flare up with terrible tics? Isn’t it the inflammation that’s supposed to cause the PANDAS symptoms? The augmentin may have brought his inflammation down to a normal level, but again, why is he having such terrible tics without inflammation? I’m wracking my brain trying to figure out the missing puzzle piece. My other son had one day last week when he wasn’t feeling well, and the past few days I haven’t been feeling great either. Did he catch something else that’s wreaking havoc on his system? Could we all have a mild case of Covid and his symptoms are showing as tics? My husband keeps saying maybe it’s Tourette’s, but for 15 months he has dutifully fit perfectly into the PANDAS box and proper treatment helped him immensely. Please help me figure out what’s going on and how to help him. I’m barely sleeping and my husband and I are devastated that this time he’s not getting better.

Has anyone’s PANDAS kid contracted COVID 19? If so, please describe symptoms and what happened afterwards in as much detail as possible. I’m sure I’m not the only one worried about what will happen to my PANDAS son should he get Covid.

OP, how’s your little one doing?

We haven’t had any problems yet but my son has always been on antibiotics during his cleanings. He did, however, have a flare up when he had a very loose tooth and when a new tooth was pushing through his gums.

Thank you Cmac. Yes, I’m the one home with both my kids as I haven’t been working during Covid, but my husband is extremely hands on when he’s home. It’s just that he’s not home much during the week and I feel really burnt out. It truly sucks to always be watching my son for tics instead of enjoying him. I’m so nostalgic for the days before PANDAS too over my life. 😢

I’m in Quebec and I’m not on Facebook (wondering if it’s worth opening an account just to join that group). it’s such a rollercoaster and each time he gets worse again it’s as if I never learn because it hits me hard. The last few days were good. Today was bad. He has a tooth pushing through but I don’t know how much I can blame that. I guess we’ll see within a few days, but then there’s always something else causing a flare - illness, teeth, etc. I am just so damn miserable all the time, and I don’t know how to train myself to accept that this is life for the next god knows how long. Dr Schulman said most kids outgrow it around puberty but I’ve heard mixed feedback about that.

I’m feeling so angry and sick these days. My son is only 6.5 and we’ve been dealing with this for almost a year. I still can’t seem to accept that this is our life now. I’m angry that we have to go through this when we have done everything possible to ensure our kids were healthy and safe. I look at my friends’ kids and think “why us? Why are we being punished?” My son had a relapse in the beginning of quarantine and after speaking with Dr Schulman in May we started him on Clavulin (the Canadian version of augmentin) with a plan to taper the meds once he was doing well for several weeks in a row. He was doing SO WELL and we finally started to have some hope, and then a week ago today he started this new tic he’s never done before out of nowhere where he bends his arms and his wrists are limp (kind of like a t-Rex). He had a very loose tooth and I knew that could cause a flare, but the tooth fell out on Thursday and the hole seems to have closed up and the tic is actually worse than ever. Yesterday was my older son’s birthday and instead of enjoying it I spent the whole time watching my younger son’s constant tic and feeling sick about it. I was up all night with a stomachache from stress. i can’t go on like this. I hate what my life has become and I’m crying all the time. I have no idea if this will ever go away, but even if it eventually does, we have a long road ahead of us and I don’t feel strong enough to get through it. My husband is angry with me for constantly feeling like this but I can’t help it. I don’t know what else to do.

I’m so sorry This disease really is so frustrating, because when things are going well, we’re constantly watching and waiting for the shoe to drop...and when things are not going well....life is just terrible We are pretty new to PANDAS so I’m not the best person to give advice for what you should do, but I’m sending you love and support and I hope your child gets over this episode quickly.

Just curious how many of our PANDAS kids are affected by swimming in chlorinated pools. Last year when my son was at his worst (we didn’t yet know what was going on) we noticed a dramatic worsening of his tics as soon as he started swimming. We then didn’t try having him swim again until this weekend, 7 months after that last time (he has since been treated for his PANDAS with antibiotics). We were terrified his tics would start again, but this time, thankfully, there was no negative effect. With camp around the corner, I do worry about him swimming every day, though. I asked the camp to have him shower both before and after he swims, just in case. So I’m curious how many of us have PANDAS kids affected by chlorine. Please also include information about where your child is in their recovery. Thank you!

We are seeing a doctor here (in Canada) who is familiar with and treats PANDAS but I don’t know how well-versed he is with all the treatment options. I think he over-diagnoses PANDAS which takes away some of his credibility too. It’s really hard to find a good doctor here who knows exactly what to do. Even getting the first round of amoxicillin for 10 days took months of begging numerous doctors until one finally agreed to try it. He’s doing well overall right now but I have no idea what the future holds.

Thank you for your reply! He’s had a good few days, but I guess my problem is that I’m having a hard time accepting anything less than 100% recovery. Constantly worrying about the “what if’s” are ruining my life. So do you think he needs a longer course of antibiotics? How do I know what to do from here?

Anyone??

My son is 6 and was diagnosed with a very mild case of PANDAS. He had pretty severe tics for 3 months last summer, which went away after we started a 10 day course of amoxicillin. This tic-free period lasted for 3.5 months, and then at the end of January he started doing this mouth stretching thing where he pulls his top lip down. It started getting more frequent so I took him for blood tests and a throat swab and sure enough his throat swab came back positive for strep. We started another 10 day round of amoxicillin and initially the tic went away completely, but then a few days later we noticed him doing it again while we brushed his teeth and read him a bedtime story. Just those times though. I thought “hey, I can live with that” but just to see if it got him back to 100%, his doctor agreed to try a 10 day course of clavulin with some additional amoxicillin added. It didn’t seem to get rid of that last minor thing so we just understood that this is what it is now. But now I don’t know what to think, because he came home from school yesterday and was doing that mouth tic pretty frequently for a few hours and he’s still on antibiotics! Again this morning I saw him doing it a few times. I don’t know what’s normal here. He has a loose tooth (his first) and I’ve read that could be a trigger, but he’s only 6 and he has a good 5 years ahead of him with loose teeth! How much can loose teeth actually affect symptoms? So my questions are: 1) is it normal to have good days and not such good days even while on antibiotics? 2) is it possible he needs a longer dose of antibiotics? Everyone else seems to take a minimum of 4 weeks but our doctor says 10 days is enough to do the trick. 3) could there be something going on in his nose that’s causing this tic? He seems to do it when he’s having trouble breathing through his nose, or crying (and his nose runs), or picking his nose. He had his tonsils and adenoids removed already but could there be some sort of obstruction in his nose that’s causing him discomfort? I’m really having a hard time dealing with all this but the not knowing for me is the hardest part. I just have a pit in my stomach all day long

In April 2018 my (then) 4 year old son had his very first tic episode - 2-3 days of mild blinking, which promptly went away for weeks or months. Then he had 2-3 days of coughing, which also went away for weeks or months. I brought him to his Pediatrician who told me that tics are very common in kids and he expects them to go away completely by the end of summer 2018. The tics continued on in the same pattern - either mild blinking or mild coughing for 2-3 days, then nothing, so I didn’t worry too much as I trusted our Pediatrician. Then on July 11, 2019, the tics started again and didn’t go away. They were more frequent and we found his behavior was different - he was getting angry over everything. He was just different. I called our Pediatrician and reminded him that this had been going on for almost 1.5 years and he casually said “oh, it’s probably Tourette’s, keep an eye out for ADHD or OCD as they’re very commonly associated”. Needless to say, my husband and I were absolutely devastated and spent the next week desperately reading and searching for ways to help our son. We did allergy tests, muscle sensitivity tests, functional neurology, biomagnetics, paleo diet, and tons of supplements. There was mild improvement but on a bad day his tics were every 10 seconds or so. Then I made the connection between his symptoms and pandas. While he has never had strep to my knowledge, I called our pharmacy and it turns out that my husband had strep in April 2018 - the EXACT time this all started. We went back to see his pediatrician and he reacted so rudely and aggressively and told us that it’s impossible for it to be pandas and he would have severe OCD. He refused to listen to the facts I had found online and stubbornly insisted he knew better than the pandas network. We then went to a Pediatric neurologist who agreed to do blood tests. Guess what it found - strep antibodies! He had his tonsils and adenoids removed on oct 8 for an unrelated problem but his ENT agreed to try antibiotics (this was actually a huge deal as I had asked several other doctors who refused to try antibiotics without a positive throat swab. We live in Canada and doctors here are very careful about antibiotics). So he has his surgery and starts the antibiotics (amoxicillin). 3 days later, his tics are pretty much completely gone. He had a rash on his hand that had been there for over a month and it disappeared. He now has maybe 5 tics a day at most. Our lives have completely changed because of this!! So clearly it was pandas and not Tourette’s. I haven’t dealt with our Pediatrician yet, but that will come in time. So now what happens? He only had 12 days of antibiotics - is that enough?? An infectious disease specialist said it’s 50/50 about whether or not it’ll come back. I’m staring at him all the time and it’s so stressful to live like this. He was supposed to have his dental cleaning before his surgery and I cancelled it. I’m honestly scared because of what I’ve read and how that triggered another episode for other kids. Also, my other son (8) started doing this weird eye roll thing around the same time this all happened. We took him to the eye doctor and he said it’s not vision-related and it seems like a habit. Could it be a mild case of pandas too? That’s his only symptom but that seems too unlikely to be a coincidence, right? I’m going to ask for a blood test requisition for him too when we go back to the neurologist. So I guess I’ve written this incredibly long, boring post in hopes of finding out what will happen in the future. It seems like my son’s case was much milder than most, and he’s never had an active strep infection to my knowledge. Does he have a better chance of full recovery? if you’ve gotten this far, thank you for reading and I look forward to any and all comments and advice!!

I always try to avoid artificial colors, scents, fragrances, etc. I was just saying to my husband that I don’t understand how food dyes haven’t been outlawed since they serve no purpose other than aesthetics and many people seem to have a sensitivity to them. We just got back home from vacation and I feel a bit better now that I can start my action plan. This afternoon we’re going to buy the magnesium and B6 supplements and Epsom salts, and his NAET test and CBT appointments are both within two weeks. Trying to get an appointment with a functional neurologist too but the waiting list is already at January and it’s a private clinic! (I live in Canada so it’s hard to get a fast appointment with a doctor under Medicare).

Thank you guys. This has been very distressing, and yesterday was the first day I didn’t bawl my eyes out. I will certainly explore every possibility to try to find some answers. Right now his tic is mild but of course that could change. One thing I realized is that he started camp this summer and has been swimming every day. The onset of this tic episode coincides with the start of camp. We’re on vacation right now and when my husband took the kids swimming on Tuesday his coughing tic was absolutely terrible while in the pool, and then after. I told my husband no more swimming, and let’s see if the tic is better. Yesterday we didn’t swim and his tic was much less frequent than the previous day. Gonna have him tested for a chlorine sensitivity.

Hi everyone, I could really use some help figuring things out. In April 2018 when my son was 4 years and 3 months old, he had a few days where he was blinking excessively while watching tv or tablet. It went away quickly. A few months later he had a few days of a habit cough which also went away quickly. We took him to his pediatrician who told us that tics are very common in kids and he expects them to be gone completely by the end of that summer. He continued to have the blinking or coughing tic on and off, with several weeks or several months in between and only about 3 days per each episode. They never occurred at the same time. We didn’t worry too much, as we expected them to go away for good, as per our pediatrician’s comments. On July 11 of this year (our son had just turned 5.5 years old), he started a coughing tic again, however this time it morphed into a throat clearing tic that was quite frequent throughout the day and has now lasted almost a month. In the beginning of this episode I took him once again to our pediatrician, and since our regular doctor was away, another pediatrician in the clinic checked him out to make sure there wasn’t a physical cause of the cough. He determined that this was a habit cough, and to just ignore it (which we had been doing all along) and it would go away. This is the longest any of his tics ever lasted, and since that cough tic turned into a throat clearing tic, we started getting very worried. I called my son’s pediatrician again this past Friday and went over his tic history once again, reminding him that it has now been well over a year and these tics are still coming and going, with this being the worst episode by far. He responded by saying that he thinks this could now be considered Tourette’s. We have been obsessively reading about tics and Tourette’s in kids, and we’re not really sure where our son fits in. According to the information available online, in order for a diagnosis of Tourette’s, there must be at least two motor tics and one vocal tic present. My son has only had one motor tic (the blinking tic) for 3 days or so at a time, but no other motor tics at this time. Transient tics are supposed to have cleared up within a year, so I don’t think that fits in this case either, however my son has gone months at a time without any tics. Does that still count as a year if the tics stop completely for months at a time? And the third option, chronic tic disorder, is based on tics lasting longer than a year but is ONLY motor tics or ONLY verbal tics, not both, which also doesn’t seem to fit our situation. After reading his history, where does our son fit?? It’s really hard to just wait and see and not have any answers. I guess we’re just wondering if our pediatrician jumped the gun, especially since he basically diagnosed him over the phone. Also, I’ve been trying to figure out how to go about treating his tic, and I’m thinking the best start would be magnesium and B6 supplements (including the magnesium cream), Epsom salts in the bath, NAET testing to see if he has any food sensitivities, and CBT. What do you guys think?