Thoughts on in person vs virtual learning for kids with IBD

[Sammysmom]

Hello everyone. My 5-year-old daughter was diagnosed with early-onset Inflammatory bowel in November 2020, and is currently on a treatment plan of Remicade every 4 weeks along with a weekly methotrexate shot. It has been a struggle leading up to her diagnosis. We endured multiple hospital stays, blood transfusions, bloody stools of almost 15- 20 times a day, significant weight loss, very similar to a lot of stories I have been reading on this great forum. She is finally starting to see some decent improvement with this biologic, but covid is always on my mind. I am terrified of sending her back to school (kindergarten) with being on immune-suppressing meds/delta raging, even with mask mandates in place. I wanted to see if there were other parents struggling with this decision? I am worried about her health, but also the social aspect as well. The news of the vaccine for 12 and under possibly being pushed to the end of 2021 is certainly not helping.

 

[Jbungie]

We are in the exact same boat. Diagnosed in Jan'21, I'm still in disbelief on a daily basis..kinda of hit us out of the blue. We would occasionally have some blood in the stool, but it was random. No other symptoms really, aside from some sweaty hair at night. My son never spit up, threw up, had an accident in his pants or urgency. All that being said we are in clinical remission (no symptoms) on remicade and methotrexate. Follow up scopes planned for Oct (hoping for endoscopic remission), which may determine if we can stop the methotrexate.

I dont think I would have felt comfortable sending him to school even before all this happened, so we are probably going to attempt virtual. It took a few months to stabilize, and 19 days in and out of the hospital. The risk of going back to that right now is not worth it, as much I am was looking forward to some sense of normalcy for him. It breaks my heart, this on top of coivd is surreal. He will be 6 in Sept.

 

[my little penguin]

Has her Gi given you guidance?

my kiddo is at the other end at 17 -high school
He does an online high school through a university .
This program was created specifically by the university”’s education department and was in place for decades before COVID .
which is different than a virtual program thrown together last minute and that was created by folks who are used to in person teaching.

The problem is in kindergarten they are learning way more than academics .
How to sit still, follow directions , problem solve with peers , be away from parents , listen to adults but speak up for themselves/be heard .
Navigate the bus , bathroom, nurses office ,lunchroom ,recess and gym.

academically parents can teach the basics at home .
Losing that year of practice school and what is expected for first grade is extremely diffcult.

is there a private kindergarten with small class sizes that has outdoor classes ?
I have seen this in a few states .
Is there a outside class such as gymnastics or daisies or something she could attend safely ?
Something that involves another adult in charge
Away from parents preferable outside once or twice a week ?

always check with your Gi though….

for us it’s easier
Navigating school with crohns is very very doable (my kiddo was seven at dx -second grade )
COVID is the tricky part right now

 

[pdx]

Yes, having a kid under 12 this school year makes decision-making so hard, even without adding IBD into the picture. We decided last summer to keep both our kids home last year, even before their schools (college and high school) made the decision to go fully virtual. Even when our non-IBD daughter's school went to hybrid in the spring, we kept her fully virtual. It was a hard year, but made much easier by the fact that the whole school ended up being virtual for most of the year, so everyone was going through the same thing.

Now that both kids are vaccinated, and masks will be required in their schools, we feel OK sending them back this year. In your situation, with a unvaccinated 5-year-old, I would probably keep her home. I don't think I would sign up a 5-year-old for any kind of virtual school, either. It's just not a good choice for little kids; you risk turning off your child to school without much benefit at all. I agree with @mylittlepenguin about looking for an outdoor kindergarten, or a small private (masked) kindergarten. And if that isn't available or feasible, I agree that outdoor classes would be great for socialization.

 

[pdx]

I meant to add that depending on how much time you have as parents, I think that homeschooling might be a better choice than virtual school for 5 and 6 year olds. You don't need to spend too many hours each day to cover the academics, and that leaves the rest of the day for group activities outdoors, or just play.

 

[Sammysmom]

We are in the exact same boat. Diagnosed in Jan'21, I'm still in disbelief on a daily basis..kinda of hit us out of the blue. We would occasionally have some blood in the stool, but it was random. No other symptoms really, aside from some sweaty hair at night. My son never spit up, threw up, had an accident in his pants or urgency. All that being said we are in clinical remission (no symptoms) on remicade and methotrexate. Follow up scopes planned for Oct (hoping for endoscopic remission), which may determine if we can stop the methotrexate.

I dont think I would have felt comfortable sending him to school even before all this happened, so we are probably going to attempt virtual. It took a few months to stabilize, and 19 days in and out of the hospital. The risk of going back to that right now is not worth it, as much I am was looking forward to some sense of normalcy for him. It breaks my heart, this on top of coivd is surreal. He will be 6 in Sept.

Initially, the diagnosis was gut-wrenching for me. My daughter was always a healthy, happy kid, and I had no clue something like this could affect her so young. I fell into some bad patterns (not sleeping or taking care of myself, googling day and night) It was a wake-up call when my daughter asked me if I wanted to play with her favorite dinosaur because I always seem sad. I had to make a change, for both of us. If I can't accept this and try to find a way to make this ok, how can I expect her to? It was a slap in the face, and I am pretty sure I needed it. I know I come off with a lot of bravado in this post, but believe me, I still struggle every day. One hard lesson I have learned (and there have been many in these past few months, especially being a single parent) is that if I am not ok, she won't be. I am so thankful to have found this forum. I think depression and any type of medical crisis, it can be very isolating. Hearing stories of other parents, and their ups and downs have been a huge deal for me. Hang in there!

 

[my little penguin]

Hugs to you
The first year to two is extremely hard
But it’s gets better honest
Most of the time my kiddo hardly thinks of crohns
It’s been ten years and it’s ok
He is ok
He swam for years while in school
Has been playing in an orchestra for years
Lots of friends
More normal issues like homework vs Xbox these days
So please understand it does get better
You figure out a med
Get a routine and your child will blossom

 

[Pilgrim]

I remember how hard it was making the kindergarten decision with H....and this was before covid!
Our daughter is now 10 and still too young to be vaccinated. She is in her first 6 months of a med change (Stelara) and not in remission. Our school is fully masked and they did a good job last year of teaching outside when possible.
Considering her age, experience handling her disease, and both her and my willingness to just pull her right out of school as soon as she can't manage or it seems like there is community transmission of delta - She will start out in- person.
My experience is that any cold or flu circulating will hit her longer and harder though. I hate that. She does miss 20-30 instructional days per year on average.
I kept her home during her first year of school. She wasn't in remission, she was 4. We read together a lot, and she could rest when needed. The next year she wasn't in remission either but we gave it a try. She wasn't behind or socially deficit. I kept her home that year too whenever she seemed to need a break. It was all fine. Today she's a bright kid, likes to read, has some friends, gets good grades even with the missed days.
It's a tough call!

 

[Lam123]

Hi! I don’t have a kid with IBD, but am a teacher so I will offer my view and maybe other options. Last school year in my school classes were a bit smaller due to kids being online. A few things to consider, at this age they do spend a great deal of time outdoors and in my school each JK student had their own desk social distanced from others and masks on. Another option might be why not send them to in person for part of the week? Or mornings only? Let your child go for a bit of social time and then the rest done online or homeschool? Not sure if this is an option in your area but where I teach we make acceptions for many.

 

[Maya142]

I have a daughter with IBD but she's a young adult. She had to choose between going to school virtually last year or being on campus (though most classes were still virtual). For the fall semester, everyone was virtual, so that wasn't hard. The spring semester was harder because some of her friends were back on campus and she was a senior but both her GI and rheumatologist did not think she should go back to school in-person. And she did understand this because she knew how sick she could get if she got COVID. Virtual school actually ended up being beneficial for her because she was in pretty bad shape during the spring semester (IBD flared and so did her arthritis). So being at home actually helped her.

As a high school teacher, I used to really think that kids missed out on a lot if they were doing online school. And I still do think that - extracurriculars, physically seeing and interacting with their friends daily, playing a sport and being on a team, volunteering, working in groups and having class discussions, traditions like prom and homecoming etc. Both my daughters did homebound school for a short period of time due to flares. They absolutely hated it - missed their friends and missed going to school.

But in certain situations, virtual school makes a LOT of sense. Having a 5 year old with what sounds like pretty severe IBD would definitely make me consider keeping her home during a pandemic, especially since she is too young to be vaccinated. I know from my colleagues that they put a lot of time and effort into making virtual school like in-person school in terms of academics. But I used to teach high school and your kiddo is a lot younger. And I do know that virtual school is a LOT harder with very young kids.

But virtual school won't be forever. Whether you choose to enroll her in virtual school or to homeschool her, at some point she will get vaccinated and hopefully be able to attend in-person school. And honestly, even if she misses some part of kindergarten, she is going to be just fine. I would try and see if you can find a way for her to meet other kids - it could be a sport like soccer or softball or gymnastics or dance or anything that she's interested in where she gets to meet other kids. An outdoor sport like soccer is probably safest (but my daughters both played soccer starting at 5 or 6 so I'm biased!!). But really, any activity works. You can also form a "pod" with other families so that each family shares supervising virtual school and their kids get to meet and play with other kids.

There are may options. Your GI can also advise you - I'd reach out to him/her. Good luck!!

 

[Maya142]

I will also add that not all kids (even little kids) hate virtual school. My daughter babysits for a family with a 6 year old girl and a 7 year old boy. They were in Kindergarten and 1st grade last year and their school was remote for the first half of the year and then they started going in 2-3 days a week. The little boy really struggled with virtual school, even with a tutor to help him stay on task. He just had trouble concentrating, wasn't interested etc. But he is the kind of kid who was routinely called to the Principal's office in Kindergarten because of his behavior - my daughter says he's the toughest kid she's ever babysat for and she's been babysitting fir 8 years!

However, their little girl thrived in virtual school. Yes, she needed some help because she couldn't read when Kindergarten started. But by the end of the year, she was reading really well. And she loved both virtual school and in-person school. So I think it really depends on the child and you know your child best.

 

[polly13]

Lucy turned 13 so has been vaccinated so it’s not a worry for her this year. We also live in a rural area with low COVID and I have 3 other kids in school so even last year I wasn’t too concerned about school. (If I lived in an urban area with lots of COVID not sure I would have been so easygoing about it) However, I did discuss with her GI and the advice was overwhelmingly in favour of allowing her to return to school. Long way of saying I think it’s really important you speak to your ibd team during your decision making process but ultimately you need to do what’s right for your kiddo and your family

 

[my little penguin]

@polly13 the Gi did explain that the vaccine only produces very low level antibodies in folks including kids who are on immunosuppressants/biologics compared to a “normal healthy adult “ so there is still a very high risk
Additionally a large portion of the immunosuppressed folks don’t produce any antibodies at all
That is why they recommended a third dose in the series (not a booster ) for anyone over 12 who takes immunosuppressants/biolgics ,organ transplant etc….

Ds just got his third shot in august but even then they are not sure if they will produce enough antibodies

 

[polly13]

All explained and also felt best defence against COVID is age, glad your boy got third dose not sure when this will happen here and it wasn’t part of the roll out here that families of immunosuppressed children were part of the prioritised groups which I feel was unfair, we also have two children under 12 Wh are not vaccinated and there doesn’t seem to be any plans to vaccinate them anytime soon. Having said all that vaccination rate in Ireland is very high - expect that 90% of over 12s population wide will be done in the next few weeks, so dh and I continue to work at home for the foreseeable future until cases drop further. Having said that we live in a rural area where COVID is very low and any cases have been dealt with very responsibly. Numbers are small in kids schools and we don’t use the school bus. Cases are high for n Ireland at the moment but all the evidence points to people not getting as sick so hopefully that will continue. So balancing it all feel it’s ok for L to be in school but still a worry and I think it will continue to be until at least the end of the year. How is COVID situation where you are

 

[Maya142]

Based on what we've been told, it depends on which immunosuppressants the child/teen/young adult or adult is on. Not all immunosuppressants cause issues with COVID vaccines and increase the risk of severe COVID. My daughter just spoke to her GI on Friday and was told that only certain drugs are concerning - high doses of steroids for example. JAK inhibitors should also be stopped if you get COVID and do compromise the immune system. Her GI said that Anti-TNFs are less worrisome though they do suppress the immune system more than drugs like Entyvio or Stelara, which she was told are very, very safe. Two biologics at once or combination therapy is higher risk but again, it does depend on which drugs you're combining.

She also talked to her rheumatologist recently about the third dose of the COVID vaccine. The drugs that put immunosuppressed patients at high risk are mostly not used in IBD (Rituximab, Abatacept/Orencia, Cellcept for example). Anti-TNFs like Remicade and Humira, Methotrexate and JAK inhibitors are the ones most relevant to IBD that could cause issues with the vaccine. We were told to hold MTX 1-2 weeks (depending on disease activity) and to hold JAK inhibitors like Tofacitinib/Xeljanz for a week after the 3rd COVID vaccine. We were told to try and schedule the 3rd shot in the middle of the cycle of an anti-TNF but not to hold it (so my daughter takes Cimzia every 2 weeks, so she'd get it 1 week after Cimzia).

So safety at school really has to do with which drugs your child is on, how old they are and whether they've been vaccinated. The thing both of her doctors stressed is that not all immunosuppressed patients are alike and not all are at high risk for severe COVID. The studies that showed that the vaccine didn't lead to antibodies for most immunosuppressed patients were largely based on transplant and cancer patients (with certain kinds of cancer). There have been a few studies on patients with autoimmune diseases and those are more encouraging - yes, they don't make as many antibodies as a normal person but something like 85-90% did make antibodies, and the third shot should help with increasing them.

So knowing that makes me feel better about having one kid going to school (grad school - so really definitely an adult now though I still see her as a kid!) - she just got her 3rd COVID shot.

 

[Maya142]

This is a good article about patients with IBD: https://www.healio.com/news/gastroe...ium=email&utm_campaign=news&M_BT=270356942992

Some studies suggest that anti-TNFs may not hurt - they might even be protective against severe COVID!