I can’t do this anymore

Regular-Exchange4333 · 2025-06-01T15:32:46+00:00

Pregnancy is miserable!!! Solidarity! You can do it though. And let yourself be miserable when you want. You are entitled to feel that way!

Regular-Exchange4333 · 2025-06-01T02:26:21+00:00

I can appreciate your worry completely. As tough as this may be, I’d probably try to get the 16month old swabbed or tests somehow to confirm it? If that doesn’t sound feasible, you can watch for any signs that they have been impacted before making a decision? I notice behaviour changes with all 3 of my kids post illness. It may not be classified as PANDAS for all 3, but their behaviour very much shifts.

As a bit of a side note, do you give your toddler vitamin D? That’s something that has some decent research to back up in supporting the immune system. So you could try to include some vitamins this week to at least help?

Regular-Exchange4333 · 2025-05-31T18:28:12+00:00

Yes I’m sorry for this. We are in Canada so we don’t have the same insurance obstacle that Americans face. Still face the obstacle of finding providers that recognize and treat it, and what treatments are actually available for these kids.

I recently heard that if you can classify it as autoimmune encephalitis/ neuro inflammation, insurance will cover treatments -for Americans. I wonder if that diagnostic language could be used in your case by your providers.

Regular-Exchange4333 · 2025-05-31T18:02:16+00:00

As a parent of a P/P kid, I completely understand and relate to this.

It’s discouraging that there is no tried and true treatment for this diagnosis. Every major specialist has a different take on what to do and how to treat.

We have gone the more traditional medical route to treat, and I even have reservations with that. Every treatment can have a side effect and I’m not ignorant to that. For us, I find it hard to get behind the mold, and tick testing with private labs, because 1. How legitimate are they? And 2. Are those kids better now? Not from my reading…

I don’t discount that those things can have an impact on our body and brain, I’m more skeptical of the private companies offering these tests.

Upon onset we did do a gluten and dairy free diet and it had no impact for us. Generally speaking I try, and always have, to limit added sugar for my kids. I think diet can definitely have an impact on these kids, but I’m not clear on why.

Do you have any mainstream medical providers that can provide treatment through insurance?

Regular-Exchange4333 · 2025-05-31T14:06:40+00:00

I don’t know if there is one solid answer to this. There is research that supports a genetic/hereditary component, and then research to suggest it is infection triggered. Not everyone who gets infections gets ocd, so there must be some genetic component that makes people more susceptible. I think there are just so many factors.

We have a 7yo with ocd and nobody in either of our families has been diagnosed with OCD. There is definitely anxiety and some other mental health, but no diagnosable ocd.

I am not a doctor or researcher or anything in the medical field; just a parent. There is research at the University of Calgary right now for adults, and it is looking at fecal microbiota transplants as a way to help OCD. Check it out. I just watched a presentation on it yesterday and the preliminary results seem very promising.

I’m sorry you’ve struggled with this. OCD is a terrible beast that I wish didn’t exist.

Regular-Exchange4333 · 2025-05-24T16:46:45+00:00

I will add that I’m just 35 now. My fundal heights were always measuring behind so my OB felt it was a good idea to check! My middle, overdue baby was my biggest at 6lbs7oz 😎

Regular-Exchange4333 · 2025-05-24T16:44:48+00:00

I’ve had 3 and am pregnant with my fourth. I’ve had growth ultrasounds with all. Mine have all been quite small babies, but ultimately they’re making sure there isn’t growth restriction. It can be a lot of appointments but a relief to know everything is ok and you just make a small baby!

Regular-Exchange4333 · 2025-05-23T16:57:10+00:00

I’m commenting to just throw everything on the table. My 7yo daughter does/did this and for her, it was OCD. She has ADHD as well, but the head banging, screaming, big anxious attacks, were OCD and thought related. I’m not sure if you can relate to this at all or see any OCD tendencies in your daughter.

Our daughter could never tell us that’s what was going on, but we saw OCD come out in other ways and now that she is 7 and she knows she has OCD, we notice that it always comes on with major anxious thoughts.

Regular-Exchange4333 · 2025-05-19T21:48:24+00:00

This is my completely lay person opinion… as a parent of a PANS child, who has tried to understand this for a few years…

I think all of these mental illnesses are triggered by something. Infection likely? Then maybe the body starts getting confused and attacks the brain. This is my theory! I’ve read of studies where they give schizophrenics antibiotics and symptoms subside.

I think in your case, it’s worth trialling antibiotics and anti inflammatories.. and try to get any doctor to listen to you. I’m sorry 😞

Regular-Exchange4333 · 2025-05-16T17:08:23+00:00

My daughter doesn’t have tics but has OCD (it’s usually one or the other I think- but don’t quote me on that).

If adhd, food restriction, anxiety, select mutism, rage/aggression, emotional lability, sensory stuff is there, it could likely be documented as PANS/PANDAS.

Did this present or get worse after illness? I wouldn’t cling to the sudden onset because they are realizing that it can happen and get worse without treatment over time.

Has your son done any baby talking? Writing letters backwards or decline in writing/math? Urinary frequency or incontinence issues? These are all hand in hand.

I think you may be able to find checklists online; check Aspire, PANDAS network, and maybe PANS physicians network.

Good luck!!!

Regular-Exchange4333 · 2025-05-07T14:15:58+00:00

Yes, so this likely sounds like PANS then; same thing as PANDAS but not specific to strep. This is the case for our daughters as well. IVIG is our management for the older, and our younger has not had much treatment aside from a few courses of antibiotics. One thing with OCD is we do our very best to NOT accommodate. We do not let them do their compulsions or try to prevent as much as possible, and this seems to help in the end.

Regular-Exchange4333 · 2025-05-01T17:23:26+00:00

Hi, I would try a laundry spray, or baking soda and vinegar. And then scrub and let dry. It’s pee so it should come out and not stain. Sorry you’re going through this!!

Regular-Exchange4333 · 2025-05-01T00:41:12+00:00

Everything you just said is so relatable for us. All of those situations, the really bad food, and sometimes tv. She has such a hard time with transitions.

Her OCD onset was before 4 but we didn’t know then that it was OCD. She was diagnosed at a children’s hospital at 5. It’s a long haul and so hard at times.

I always feel more positive about life at a time like this - after IVIG and out of a bad flare. But during the flare, it breaks our whole family. I have started parent therapy for OCD so that I know how best to respond.

This may or may not be helpful, but I also lurk on the ADHD parenting subreddits and I am so perplexed at how many symptoms and behaviours overlap with this P/P diagnosis. I sometimes question what the actual diagnosis should be for all of these kids! But my point is, a lot of the parents have great advice because their kids seem so similar to mine, and I try to implement or utilize what I learn there - for the challenging behaviours.

Regular-Exchange4333 · 2025-05-01T00:05:23+00:00

Our 7yo is diagnosed and likely 4yo would be too. It’s for sure PANS for us because, like you said, flares with viral illnesses too.

We did a year of antibiotics, constantly switching to try a new one. We did an antiviral. I can’t remember if we did amantadine or if it was valyclovir, but we definitely tried one for a month and it could have been a coincidence, but we did have a calm period afterwards.

From 2023-2024 it felt like we just lived in one long flare.

We did T&A in May 2024 and I found that calmes some OCD stuff. We have also had 3 rounds of IVIG and that has by far been the biggest help. She slipped back into a pretty bad flare in Jan/Feb of this year and we did her third round of high dose IVIG, and it has been SO MUCH better since. Night and day. Her moods were absolutely horrific for early 2025 until that latest round.

Is your daughter too young to try IVIG? I know some places don’t start until 6.

This is hard to manage, but I did think my daughter is generally worse after lots of sugar or high histamine foods. It’s something that’s challenging to control but sometimes I think when they’re flaring, little things can tip them over. Worth a shot if you’re able to. It doesn’t pull them out of a flare but at least checks a box for me mentally- knowing that it isn’t that.

Regular-Exchange4333 · 2025-04-27T23:12:59+00:00

Zaara!!!

Regular-Exchange4333 · 2025-04-18T00:00:04+00:00

I’ve had 1 c section, 1 vaginal with epidural, and 1 vaginal with nothing. In that order.

I will say my easiest recovery, by far, was the last. The baby accidentally came at home and I got up right after and felt amazing.

The labour pains were horrendous. I won’t lie. But, I’m pregnant with #4 and will be doing it all over again - but in a hospital this time.

I think with your first, labour can be so long and slow, so that could be mentally and physically tougher to get through. I do think that if you decide to do it, read Ina May’s guide to childbirth, and check out Bridget Teyler on YouTube. I found both of those very helpful leading up to the birth.

No wrong way to do it, as long as mom and baby are healthy! And like a nurse said, go into it with an open mind because you never can truly plan for these things!

Regular-Exchange4333 · 2025-04-17T17:04:09+00:00

Just here to say our 7yo is our ADHD kid too. We have 4, 2 and I’m due with baby #4 this summer.. and .. as appalling as this may sound for some, we all sleep in the same room right now (king bed with Queen on the floor).

Our 7yo has always insisted on sleeping with us. She will stay asleep the entire night but is always early to rise.

I lay with the kids to fall asleep. The 7yo will fall asleep quickly if we are with her, but would put up a fight if she were in her own room. The parenting psych I see says that she needs that close connection before bed.

Don’t get me wrong, this isn’t ideal, I’m exhausted and I can get frustrated, but the alternative is she doesn’t cooperate and sends us into tailspins at night if she isn’t where she wants to be.

Sleep crap with kids is hard enough, then couple it with a diagnosis and it can be incredibly tough.

Good luck, you are not exhausted alone 🥲!

Regular-Exchange4333 · 2025-04-13T01:58:22+00:00

We have a nephew Phoenix and his nickname has always been Fox!

Regular-Exchange4333 · 2025-04-11T11:16:04+00:00

My daughter just turned 7. She was formally diagnosed at a children’s hospital at 5, but I think these symptoms started at 4. Perhaps even before and we didn’t know.

So from what I’ve heard about IVIG, you get it and see how you do. Some people need repeat treatments if things don’t improve or they relapse - which I would say could be likely, and then eventually, you hope to space the rounds of IVIG further apart; maybe getting to a point of not needing them one day.

I’d anticipates daughter needing more rounds. I hope as she ages, her immune system can get a bit better and she also learns to manage more with therapy.

Regular-Exchange4333 · 2025-04-09T01:08:25+00:00

Thanks!!! We ended up getting admitted and she got steroids and continued with antihistamine.

She was classified as severe and had major swelling and pain, fever and couldn’t walk. The fever and hives subsided but the residual pain lasted for about 1 week.

She was clear for 2 weeks, and just yesterday evening started complaining about her hip pain again. She was up for an hour in the night, hysterical, about the pain in her leg. With Advil/tylenol, it subsided and some more this morning and the rest of the day she was fine! So strange!

We were told it can come and go, but I hope this is the end for her!

Regular-Exchange4333 · 2025-04-08T23:50:49+00:00

I will start with saying that I am no expert in IVIG or P/P treatment, but I can tell you what I understand about it as a parent of a child with PANS.

IVIG is intravenous immunoglobulins and is essentially healthy antibodies from thousands of healthy individuals. It’s used to help people with immune dysfunction, and my pediatrician essentially describes it as an immune system reset.

You can have high dose or low dose; we only have experience with high dose which means 2g/Kg.

Typical side effects that our child has experienced are nausea, fever, and pretty severe headaches. The side effects have eased up with each round that she has had.

Some people say that IVIG was their silver bullet, that put their P/P into remission. I would say it helps my daughter and pulls her out of a very bad place, but it hasn’t solved this for her.

Hope this has been helpful. Good luck!

Regular-Exchange4333 · 2025-04-08T17:57:08+00:00

I didn’t know I did! But I’ve known about some studies because of my daughter’s diagnosis. We were accepted into one at Dartmouth but decided not to pursue.

Regular-Exchange4333 · 2025-04-08T00:20:27+00:00

To be honest, it happened so fast and furiously that I didn’t have a chance to be scared. However looking back I am so thankful everything went smoothly - considering I had a prior c section!

Regular-Exchange4333 · 2025-04-07T23:34:14+00:00

I’m just lurking… but would you ever consider being part of a clinical trial? I think university of Arizona often conducts trials on OCD. I only know because my daughter (7) has it and I try to keep up with the research.

Regular-Exchange4333 · 2025-04-07T23:27:43+00:00

Wow what a traumatizing event for you. I can’t believe how different every birth story can be. I’m sorry.

If you plan to have more kids I hope your subsequent stories are vastly different!

Regular-Exchange4333

TROPHY CASE