Lockdown (And Beyond) Hatchlings

[Little My]

Does he eat school lunches? I know B hasn't been eating as much, because his packed lunch leftovers come home which is quite handy for me to gauge the situation.

When we saw the doctor this week, it was all very positive, but he has lost a little bit of weight. I know he has been more active lately, but that just means he should be eating more, not less. So he's on a fattening-up regime, otherwise he might have to switch to a non-stimulant medication. Full-fat milk, lots of cheese, butter, oil. Lucky him. ;)

[Cerise]

That’s what we did to J! A diet that the rest of us would have gain several stone!

[Jet]

He does eat school lunches, so it is harder for me to know how much he ate, but he's better at being able to more clearly tell me what he did and didn't eat since he's been on the medication, interestingly.

I have his ARD to discuss his IEP today and the diagnostician called me to run me through her report and draft IEP this morning. She asked me about autism and whether that had come up in the assessment we had done (it did not but it was in my thoughts when we decided to have him assessed and I maybe incorrectly assumed they'd have said something if they thought anything beyond severe ADHD). She didn't see a need to push to do a specific evaluation for it now (aside from she thinks it might grant him better understanding from teachers (which is annoying but likely true..I'm seeing more and more that people don't understand what comes along with ADHD a lot of the time), it wouldn't change the support he will get) but that we should keep an eye on it and potentially reevaluate next year once we've had a chance to see how he gets on with the medication and additional support (including personal social development in class support as well as learning support), but her 2c was just keeping an eye on whether the social aspects of what he has going on do not change/improve over time to maybe consider it.

[Jet]

So we had L's 1 month check in with the new meds. He's lost 3 lbs. I could already tell in his face, not helped that he's had either terrible allergies or that combined with a little bug that S also had with a cough and congestion (not covid) and today woke up with a stomach virus. He was miserable and thankfully we had meds left from the ER so that helped immensely.

Anyway, we've got to get a better plan for more food at breakfast. He was doing well for a couple weeks, but latterly hasn't been drinking much of his smoothy so I need to come up with some heftier options for him. He's not got much meat on him to be losing more weight. I am generally quite lax on food rules anyway, but the pediatrician basically said she doesn't care what he eats, just get as much in as possible

Overall the check in result was no change in meds, keep on checking on how well it's working and for how long (L thinks it wears off at 3, I think it's more like 4-5 which means it's doing what it's supposed to be), don't take any breaks (we need to keep it up through summer camps for sure as they were a disaster last year and it's helping him so much with just general being, I have no desire to take that away from him) ...then to try to get the morning food sorted as they think it'll help the stomach aches he still gets in the day time.

The things I'm seeing seem really little, but it's all big impact in the grand scheme of things...cleaning up after himself, closing circles, completing tasks. He used to just leave a trail of chaos and I'll find he's got food, put the box or packet back where they were and closed the fridge or the other day he wore a nice shirt to school that was on a hanger and I didn't see the hanger laying around and he told me he'd taken it back to his room and hung it in his closet - unheard of Also asking permission to do things I know for sure he'd normally have just done...we were getting our hair cut and they went to jump on my hairdressers trampoline while she was working on mine and she also has a pool and he popped his head in and asked if he could put rocks in her pool? She said no, he knew she'd say no, but that he asked and then didn't do it vs just putting rocks in her pool He did the same things several times about other stuff. He was told no to all and then didn't do any of them

[Little My]

That sounds positive overall! Great!

B seems to be putting a little weight back on now. It's been unfortunate because he's been so much more active since he started taking the meds (practicing for track & field, and also soccer). I'm taking him in to be weighed by the nurse next week. So hopefully they register a slight gain too. He is still a healthy weight, so I think the main thing is he's not lost any lbs.

I have been heavily pushing ice cream in this hot weather.

[Estrella]

That really does sound positive!

J has lost 0.2kg since he started on the meds so I’m just feeding him every time he says he’s hungry. And I’ve upped his dinner portions too.

[Jet]

L basically eats double dinner now Last night after his docs appointment he begged for McDonalds and ate a quarter pounder, 2/3 of a large fries and a mango pineapple smoothie and then asked for a snack. Tonight he had 3 soft boiled eggs, 2.5 pieces of toast and a couple of small sausages for dinner and is now eating half a mango.

He wouldn't eat but a few slices of apple this morning (I'm hoping this is just the stomach bug) dipped in yogurt and honey. Asked for an apple later but didn't eat it and later reluctantly ate a roll.

[olive]

T is off his meds and I can really see a difference.

He’s an absolute disaster when it comes to organisation and turned in three exams papers only half done. I had forgotten how much hard work it was for T (and us) pre meds. But he’s decided he wants to come off them now as he’s suffered horribly with anxiety. He’s a million times happier but I’m worried about how he’s going to cope when he is back to school in August.

He’s incredibly bright but none of that translates to paper and he doesn’t have an iota of common sense. I don’t know how he’s going to manage.

He’s so eating us out of house and home. He’s always had a big appetite but it’s out of control now and he’s still super skinny.

[Jet]

So, we are about 5 month in and it seems L's meds are now wearing off early (after lunch so around 12:30, when we hope for as close to 8 hours to get through the school day) so he's really struggling to do anything at school in the afternoon. Thankfully he hasn't been disruptive in class just not able to focus and work but we've had some incidents at afterschool (including biting :sigh: ) so we are trialing increasing meds. I don't have a good sense of how it's going yet, he said yesterday was the same as usual and today was better (we did it at the weekend too but that's a different environment, though I did take him out to a very busy and sensory overwhelming store to look at halloween stuff to see how he fared and he was frankly like not my actual child (if unmedicated) ). The doctor said another option is another slow release that he would take at school after lunch but she's worried about prolonging the appetite suppression through to later in the day and him losing too much weight again.

I knew we'd be too lucky to get it right first time, I just thought we might know sooner than this that he might need a higher dose. Trial and error was right.

I also now have S going to the paed this week as he wants to try taking medication too. He's noticed how much of an impact this has had on his brother and additionally, it's a real eye opener for me now how it's brought more focus (for me) to now where S is struggling. It's not that I didn't know before, but L was always the extreme so it overshadowed S a little - he also tries really really hard, so there maybe an element of masking. And maybe it's just a stage he's got to, but he is often very frustrated that his brain won't work when he's trying to tell me things or articulate himself and he spent the summer referring to his 'pea brain' and things like that. I get so scared of losing any of them in this, but have been trying to remember he can stop at any time. He's had a great start to this school year and his teacher seems really reasonable and solid - she just emailed me this last week saying how much he brightens her day and she thinks he's grown a lot in confidence in the last month or so

[Little My]

The meds wearing off so early in the day is frustrating, especially when you can see how much they're helping when they're in effect. (And that is so good!) I hope he can get some combination that works.

B really seems to feel a difference when he doesn't take his meds, but I know he still struggles to pay attention at times. I asked his new homeroom teacher if we could give him a yoga band to put on his chair, like last year. That seems to be very helpful, and it also hopefully reminded her that he needs some extra help to focus and is trying very hard even if he doesn't always meet her expectations. (He does not have an IEP or any particular accommodations.) At home we are currently in battle about access to gaming, because his homework was suffering. We are having a no-internet 'reset week'.

[Estrella]

We have also had med review recently (after an “incident” at out of school hours care) and had them increased to 30mg. The 20mg with hindsight were wearing off after about 7/8 hours. He’s super twitchy without them. The higher dose seems to be helping. We also have a script for melatonin which I was thankful for earlier in the week as he had insomnia but he freaks out with it and gets close to meltdown. The melatonin worked magic.

[Jet]

Our switch to 20mg doesn't seem to have done much. It doesn't seem to make much sense to increase for no benefit so I think we're going to have to try the second quick release taken at school for the afternoon. After school are being proactive, seem really understanding that when things happen with him it's his reactions to things that other kids (often older) do so they are keeping an eye on things.

S has been interesting on the meds - he doesn't seem super different but the first or second day, he opted not to watch TV later in the day and told me stories for 45 mins straights. This is not unusual of him to talk at you at length, but it was a bit more intense. One thing that it is doing for him is slightly intensifying his desire or ability to talk about his hyper-fixations I'm hoping that if it helps there, it'll help with the less desired stuff as well. He does say it is wearing off around lunch though, so I'm a little torn if we just keep going knowing he might get half a day benefit or if we also try to increase.