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.