Some of the struggles

[KidsNkitties]

My 12 year old son was diagnosed with ADHD when he was 5 years old. I could have diagnosed him myself when he was a toddler. He was all over the place and couldn’t focus on an activity for more than a few seconds. When he got to school, his activity level started to calm down but his focus and organizing skills struggled.

We held him back in second grade when we realized how far behind he was. We finally made the hard decision to try medication. Staying back and starting medication was such a gift for him! I share this story for anyone struggling to make these decisions. He decided this past year that he wanted to try school without medication. He made it through fifth grade doing well. He’s never had the behavior component of ADHD but he is still very unorganized and has mild anxiety.

He is starting middle school in a couple days and I am worried if he will keep up. Luckily, I feel like he understands that medication can really help if needed again. I got him organized with school supplies and created a before and after school “to do” list.

I share this story of my son because him and his sister have two very different journeys with ADHD. She has taught me to not judge parents, to be kind and understanding because she is my ADHD child with the behavioral component. Her story is much different.

I never realized how ADHD can create such challenging behavior. My daughter struggles with impulsivity (hitting others, saying things she doesn’t mean, reacting negatively), full on meltdowns(which luckily have decreased with age), sensory (clothing, smells, sounds can set her off).

Most people think ADHD is hyperactivity and inability to focus, including me because that is my experience with my son. But when you really read about ADHD, the behaviors I just described above about my daughter are so REAL! It takes so much energy every day to parent a child with the behavioral issues because “normal “ parenting methods rarely work. This is what most parents don’t understand and why I searched out this group because I needed to connect with parents who share my experiences. So thank you everyone for being here, reading my story and sharing yours!

[Hidden]

Thank you for sharing. My son’s ADHD is just like your daughter’s one/ also with the sensory processing (integration) component. As you say- parents who have children who don’t have ADHD will never understand the struggle of parenting a child with ADHD . For me this has been even more painful realisation when my younger son was born and everything about parenting him has ever since been easy, all could be just intuitive, I don’t even have to think how to parent him, it just works…my younger doesn’t have ADHD, he’s well liked, popular and sociable, super smart and has a cheerful, optimistic disposition…You are lucky that your son has already some self awareness and insight into medication. My son with ADHD is 9 and at this stage he still doesn’t have any insight into medication and it’s us parents who have to monitor symptoms and side effects and feed back to the psychiatrist.

May I ask what medication your son was on and why he decided that he didn’t want to use it any more?

[KidsNkitties in reply to Hidden]

When he took medication it was a methylphenidate type. His teachers noticed how focused he was and his school work improved tremendously! He didn’t like that the medication made it challenging to get to sleep at night, even with taking melatonin. He also didn’t like that it affected his appetite.

[Hidden in reply to KidsNkitties]

It might be that with all the support from you, all the organisational strategies etc he’s now mature enough to manage his ADHD without medication. That’s great.As you pointed out, it’s often the severity and type of ADHD that determines if this is ever possible to function well enough without meds. And what is ‘well enough’…I suppose we all want our children to reach their potential and we don’t want this jeopardised by ADHD …

Luckily if your son ever wants to get back to medication then there are other meds to try as well.

Methylphenidate caused severe side effects for my son so we swapped to non stimulants and now he’s ‘happy’ on Atomoxetine 40mg daily. The problem for me is that I can’t really see a great improvement in focus. For me a ‘great improvement in focus’ would be when he starts working hard and managing to concentrate on topics he doesn’t like and finds difficult - like maths. This hasn’t yet happened- he still shouts that he hates hard work and doesn’t want to do it. So I wish there was a medication that would make his emotional regulation and impulse control better… He doesn’t have any impulse control, doesn’t think about actions and consequences…However I can see that Atomoxetine helps him with anxiety (he used to have a lot of anxiety and now this is under control), also I can see improvement in concentration on stuff he does like, as before medication he couldn’t even focus on stuff he does like like reading or watching a film. Whereas now on meds he is managing to read Harry Potter (already on book 4 and motivated to finish the whole series), he manages to watch a film from beginning to the end, also manages to take in when he’s learning stuff like tennis, swimming etc. So it’s a partial success… I just wonder if with a different medication can it be even better or is this ‘the ceiling’.

[KidsNkitties in reply to Hidden]

My son is nervous for middle school, we are giving him a couple weeks to adjust and then we can see if he feels he needs medication again. His main issues with ADHD are lack of organizational skills and ability to focus on things he’s not interested in. He also has trouble tuning out distractions. Sounds like the medication your son is on might be an option. It’s definitely something to consider with his pediatrician.My daughter was taking dexmethylphenidate, which helped a lot with her impulsive behavior, helped her stay focused and calmed her down in general. She unfortunately had such little appetite and just gave us so much grief taking the medication every morning…that battle alone was so exhausting! The pill was in the form of a capsule, we opened and sprinkled into something…we tried everything to try and mask it but she always complained. We stopped the medication for summer, worked really hard with her behavior (it wasn’t easy). Any of the chewable and liquid options for medication are super expensive and my insurance won’t cover until I’ve met my deductible. She will most likely have to go back on something, I just don’t think she can get through without it. She can be disruptive, refuse to listen and cooperate if she’s not happy with the transition to the next task in school.

[Aloysia in reply to KidsNkitties]

My daughter had huge problems taking the pills (whether whole or opened). Her pediatrician told us a month ago that there is a patch called Daytrona. This has solved our delivery problems!! I wish we'd been given this option 2 years ago. At this point we're just working to find the correct dosage.

[KidsNkitties in reply to Aloysia]

Thank you! I will look that one up. That could really be helpful.

[Aloysia in reply to Aloysia]

FYI: Correct spelling is Daytrana (methylphenidate)

[Hidden in reply to KidsNkitties]

I wonder if your daughter’s ‘opposition’ to the meds is because she actually can’t express it, but she isn’t quite happy on Methylphenidate. As I said, my son didn’t have much insight and could tell himself what was caused by medication but he day we stopped Methylpenidate and started titrating Atomoxetine, he came over to my husband and spontaneously said ‘Daddy, I am so happy’. It really broke my heart.The trouble is Atomoxetine can’t be taken out of the capsule and sprinkled etc, it has to be swallowed whole in a capsule and one can’t touch eyes as medication itself is an irritant to eyes.

My son swallows whatever tablets I give him with no problem but I can imagine if your daughter is refusing then administration is a problem.

Have you thought of other non stimulants (in general they don’t cause loss of appetite or sleep problems to the same extent as stimulants)- there might be one of these which would be in a form of liquid?

I even heard (actually somewhere here on this forum) that Guanfacine causes increased appetite! I then read the medication leaflet and some medical journal papers and it confirmed that indeed Guanfacine doesn’t cause stunted growth and that it does increase child’s appetite. I told my husband that had I known this I would have asked for Guanfacine for our son😄Now I feel I have to give a chance to Atomoxetine😄I would feel silly now asking to try 3rd medication only because it has a side effect of increasing child’s appetite!

[MommaofandwithADHD in reply to Hidden]

The common over the counter allergy medicine Cyproheptadine is what our child's doctor gave her to stimulate her appetite, and boy did it work. We had to leave food out on the counter at night cause she would wake up at all hours looking for food. So if you try it, definitely try it in the morning on a weekend. Just in case it makes them sleepy. It didn't with our daughter.

[KidsNkitties in reply to MommaofandwithADHD]

Thanks for this info, this is helpful

[Hidden in reply to MommaofandwithADHD]

The only major problem with the Cyproheptadine (at least for us) is that it has a side effect of mankind person hyper sensitive to sun. We are currently on our 3rd super sunny holiday this summer (Venetian Riviera, then Tuscany and now the South of France)- I already have to put a factor 50 or 30 on my kids so I would definitely not want to risk Cyproheptadine. Adding to this that Cyproheptadine also negatively interacts with some medications such as certain types of antidepressants, I just feel it’s too risky. Plus in the UK it’s quite expensive. I get generic Zyrtec (which is antihistamine the same like Cyproheptadine and pretty much the same causes increased appetite ) which is soo much cheaper and also over the counter. To be honest I found out that any antihistamine such as travel sickness antihistamines or hay fever tablets do increase appetite as these work with certain receptors in the brain responsible for signals telling that a person is hungry, so I just give my son Zyrtec as this has very well evidenced safety profile in children and is also cheap when I buy it generic.

[KidsNkitties in reply to Hidden]

We started Zyrtec for legitimate allergies a few weeks ago. She hasn’t been on ADHD medication during summer but man her appetite has been crazy! I kept thinking her body was playing catch up but it could be the Zyrtec.

[Hidden in reply to KidsNkitties]

I only worked it out by accident- my hubby has a seasonal allergy and he used to take Zyrtec and surprise surprise always putting on a few pounds during this time of year. My youngest child has suffered from travel sickness and I was always perplexed why on the dot 2 hours after administration of his travel sickness antihistamine he says ‘Mummy I am hungry’ and he carries on like this for the whole day whilst the medication is working.’ Then I started digging stuff out in medical journals online, comparing medication leaflets online and so on. There are certain antihistamines which don’t have such severe sedating and appetite inducing effect (for example Loratidine is not so sedating), also probably it’s different for different people (like with all medications).My ADHD child has never had a good appetite (as if his brain just doesn’t tell him that he’s hungry and also tells him very quickly that he’s full) so on top of this when he started suffering from appetite suppression from his ADHD meds, I really felt stressed. In the UK psychiatrist never helped me out with this, just said to refer my son to ‘eating disorders clinic’. I mean, I know, he had to say that. So I just give my son Zyrtec and he eats well since I started this and also his hight is fine- he’s growing as expected for his age. I just never felt he needs an ‘eating disorder’ clinic. He eats foods form entire world. He even likes oysters! He eats sea food, lamb, sushi, spicy food such as curry and Chinese, loves trying new things. It’s just his brain was never telling him that he was hungry. Now it’s sorted thanks to Zyrtec. No need for the ‘eating disorders’ clinic and £hundreds spent on fancy expensive therapy for his ‘eating disorder’.

[KidsNkitties in reply to Hidden]

I had given Guanfacine a thought as well for my daughter , I had read that it helps with the behavioral aspects of ADHD. I didn’t know it helps with appetite, thanks for sharing this tidbit!

[Imakecutebabies]

Yes, my son is like your daughter, with both the behavioral and sensory components, and I was beating myself up for so long wondering why I was doing such a terrible job at parenting. But then with my second son, who does not present with ADHD... My parenting worked just fine. I've had to slowly convince myself it isn't me. Getting his diagnosis has actually helped a lot with my own self-image. However, I still get the side eye from other parents at my son's school because his behaviors have affected their children and they believe it reflects on my parenting. It is SO HARD to parent a child with the behavioral component of ADHD, and after parenting my neurotypical child, I realize that other parents, whose kids are all like my neurotypical child, will just never understand the struggle.