Need help, something above and beyond medications :-(

[jlsanchez08]

I haven't been on here in a long time but I don't know what to do and maybe somebody on here will have some ideas. My daughter who is my difficult child with extreme ADHD and ODD is already taking Focalin XR 15mg in the morning and at 1:30 because it doesn't seem to last in her system even though it is suppose to be extended release. I don't know how she manages to zip straight through it all, she is so petite but she does which leaves her unmedicated from around 5:30PM until bedtime. This would be no big deal for a normal child with a slight case of ADHD but she is quite the wild child and can be destructive to people/things around her. We handle her at home and can deal with it but when we try to go somewhere or do something outside of the home this is where I need to know if there is something that I can do to help her. I have heard some people say that letting their child have a coke seems to help but I am not sure what to do, I definitely do not want to do something that will make it worse. She can't even focus at Girl Scouts since it is in the evenings and seems to stir up the whole troop since she is loud and runs all of over the scout house. I am sure the parents are thinking that she just needs a good spanking and that I am a bad mom but if they only knew what was really going on inside her head (and inside mine).

Example: We get to scouts last night and she is doing okay, medications haven't totally worn off. Did I mention I am the troop leader on top of it all lol. Any way we get there and we are making Daisy bracelets. My daughter out of all the girls (remember my daughter is behind in every area possible, we are even having her repeat Kindergarten this year, which was the BEST thing ever for her) so as I was saying out of all of the girls she is tying the knot for her bracelet and the girl's next to her since the other parent couldn't get it. She placed all of the beads on her string in the right order and was the first one done! It was one of those moments where I was so proud of her, I forgot for just that one moment that there was anything wrong with her! And then, it happened medications were gone and so was she. She was everywhere, she was screaming, she was banging the chair on the concrete floor, etc. She was not doing any of it in an angry way, she was very happy in fact she was just WAY TOO HAPPY and WAY TOO LOUD. She was out of control and I had absolutely no control of her at all. I tried to continue to lead the troop and just keep hugging her close to me every once in a while to whisper to her and remind her to stay calm and just remind her to be calm, tried to soothe her and be calming to her to bring her back down. It did not work at all last night. What do I do? I can't lead a troop with my daughter the way she is and the only reason why I am doing girl scouts is for my daughter. I just want her to have something that a normal little girl gets to have and it is something she wants to do, she just can't focus to do it.

 

[Andy]

I don't know this medication so as with everything, check with your doctor. Can you give her another dose at 5:00? You would need the doctor to approve it.

Maybe also check with the doctor on switching to something else? Each medication is different for each person.

 

[jlsanchez08]

The problem with the medications is that she is only six so she can't swallow pills. The one she takes now is a capsule so we can open it and sprinkle it on applesauce. For the most part we just tollerate the behavior in the evenings and just have loud dinners because the two little ones with ADHD feed off of each other at the dinner table and seem to just get louder as we eat. It is the things like Girl Scouts or just anything that we want to do outside of the home that causes issues. I was just hoping to find an alternative to giving a third pill in her case. :-( Too bad there is not some magical cure out there.

 

[BusynMember]

I have a fourteen year old with SEVERE ADD (inattentive). She has never been destructive or even a behavior problem, just spacey and forgetful. Are you sure there isn't more going on than ADHD? Who diagnosed her? Has she ever seen a neuropsychologist for a total evaluation?

 

[jlsanchez08]

MidwestMom, I think what makes her destructive or impulsive isn't really the ADHD but the ODD (oppositional defiant disorder). It was just diagnosed by the pediatrician. We have never done a neuropsychologist evaluation. Half of the time I just feel like I am losing it because of the way that she is but I am managing to raise all five kids with everyone doing good in school and turning out to be good kids. One of them just looks like she is possessed off of medications :-(

 

[jlsanchez08]

I hear of people talking about the neuropsychologist evaluation but what all does that consist of? Do they even do that for a six year old? Guess I need to do my research on that.

 

[susiestar]

A neuropsychologist evaluation refers to a complete evaluation done by a neuropsychologist. Some people find that developmental pediatricians also do this very complete exam. They ARE done on six year olds. My son was 7 or 8 when he was tested. The evaluation consists of many tests lasting a total of 10-12 hours broken up into many shorter sessions. Often a neuropsychologist will do all the tests themselves, but we had the tests done by a dev pediatrician who had a group of professionals in his practice who did the various tests and then they all got together to discuss the results and come up with some answers. I liked this because it wasn't the words or opinions of just one person. Having had my son have different teachers, tdocs, etc... I was aware that each of them saw him very very differently, so having a group of professionals evaluate and then work together gave us a more complete picture (esp as Wiz could be VERY different with one person than with another - often depending on mood, the person's gender, and almost anything else). Either way it is done, you get a whole lot more info than you do from just seeing a psychiatrist or therapist or pediatrician.

Has your difficult child ever had an EEG? Seizures can cause a LOT of behaviors and many look like various behavioral problems. Some types of "adhd" are not actually a result of adhd. My daughter was diagnosis'd with "inattentive" adhd, but I insisted on having an EEG before we started medications because many adhd medications lower the seizure threshold, making them more frequent. We were all shocked when the neuro asked us to come in for the results (always a sign of a problem here - if nothing shows they tell you on the phone!). She has Absence Epilepsy and her seizures just look like she isn't paying attention. In reality her mind has turned off - she literally was unaware of about half of the time because the seizures were so frequent. They lasted less than a minute, but they were VERY frequent. It was no wonder she was having some trouble in school - she wasn't "there" half the day!

In addition to the neuropsychologist, you also NEED to have your kids tested by a PRIVATE Occupational Therapist (OT) (occupational therapist) for sensory problems. Sensory integration disorder is when your brain doesn't handle the input from your senses in the "normal" way. It is a difference in how the brain is "wired". It can create HUGE problems with children either seeking or avoiding various types of sensations. Problems with clothing, picky eating, seeking out certain movements, etc... are all symptoms (My youngest used to watch tv sitting on his head on the couch. NO idea how he started - the other kids never did that until he did, but he LOVED it.). Occupational Therapist (OT) is a lifelong problem but it CAN be managed and treated. The GOOD thing is that the treatment is NOT invasive and involved NO medication. It can help the frantic activity that is thought to be part of adhd in your kids. I am NOT saying that they don't have adhd, just that this may be part of the puzzle. The main treatment for this is a combination of brushing therapy and an appropriate sensory diet. Sensory diet is providing the types of sensation that she needs. Brushing therapy uses a soft brush like a surgical scrub brush to brush the body in a certain pattern, followed by very gentle joint compressions. Most kids do not object to this and it can be done over or under clothing. Brushing MUST MUST MUST be taught by a qualified Occupational Therapist (OT) but then can be done by a parent in about 2 min or less. If done on the wrong parts of the body it can create HUGE problems, so learning it from an Occupational Therapist (OT) is super important. There are 2 books about Sensory Integration Disorder (SID) (sensory integration disorder) by Carol Stock Kranowitz - the first explains the problem and how the treatment works, the second is all activities to provide different kinds of sensory input. "The Out of Sync Child" and "The Out of Sync Child Has Fun" are the books - I would borrow the first and buy the second as the second is more useful day to day (and a LOT of fun for the whole family, in my opinion!) .

AS for your child and evening activities, well, you have some choices. A lot of it isn't really her fault. You can see the difference the medications make, and with-o them it will be super hard for her to cope. You could stop the activities. You can also try other medications, either for during the day or a dose for the evening. Both ritalin and adderal are both fairly short acting and might make evenings a lot easier. Some of it depends on the side effects - does she eat well while the medications are active? It can be a real problem. You can also try other stims - one of them comes in a patch so taking pills wouldn't be a problem. I would work with her on swallowing pills - those mini- m&ms are a good thing to train her with. My youngest cannot have liquid antibiotics because they ALL have artificial sweeteners and he is allergic, so he was swallowing pills and capsules by age 3. One of the reasons your daughter's focalin does not last very long is that it ismeant to be swallowed and digested in the capsule. with-o the capsule it messes up the extended release part and it cannot stay in her system as long.

Caffeine is a stimulant and some people do find it helps their kids. I can remember back in the 70s and early 80s when my dad taught shop in very poor schools he would pour coffee or cokes into some of his students. It helped them and back then there were not many docs who would recognize adhd even existed, much less try to treat poor kids with no insurance for it. It doesn't help all kids. Mt Dew has the highest amt of caffeine of any soft drink, followed by diet coke then coke. There are all kinds of other caffeinated drinks, but they are not always something you want to teach your child to drink. You may decide it is worth trying as it cannot hurt long term if you just try it a few times. Many parents that I have known have said that the effects of teh sugar make the effects of the caffeine less noticable.

I hope some of this helps. If you give her medications in the afternoon/early evening, you don't have to do it every day. That is a choice. We chose to medicate our difficult child every day because it made a HUGE difference AND because he asked us to. He did nto like the way he felt/acted on the days/times he was not medicated. So he was medicated every day regardless of if he had school. He just couldn't keep it together with-o the medications to help, Know what I mean??

 

[bby31288]

My question, if the capsule is extended release wouldn't opening it make "not" extended release?

 

[DammitJanet]

That would be my question bby.

I would work on getting this little girl able to swallow pills but also I think some of these medications can be compounded if you can find a compounding pharmacy which shouldnt really be too hard. My pharmacy does compounding.

When my boys were young, we often had to medicate them with a tiny dose for evening activities. If we knew they had a ball game or 4H club activity after 6 then we just gave them a ritalin around 4:00 so they would be good to go but also ready to have it out of their systems by bedtime.

 

[TerryJ2]

Welcome, Jlsanchez.

Yes, opening the capsule will decrease the extended release capabilities. That's part of the problem right there. If she's not swallowing the capsules, then if it's less expensive, go back to regular dosage, 3X a day, sprinkled on applesauce.
I hate to tell you, but my son didn't start swallowing his pills until he was 10 or 11.

Any chance you can get another mom to step in for you at Scouts while you get the medications straightened out? I'd call everyone on the list, and give each mom one night. That should carry you through several wks right there.

She sounds like a happy kid, even though she's off the wall. Unless by being destructive, you mean deliberately destructive. But the way you've described it, it sounds like she is totally unaware of what she is doing, like what's going on inside of her body doesn't match what's going on in her environment.
So I would agree with-others, that a neuropsychologist exam is the way to go.

 

[jlsanchez08]

Thank you all for your comments. As far as the capsule goes it is common for kids that can't swallow them to have them sprinkled on applesauce or something of that sort. They are actually extended release beads mixed with short release beads all together in one capsule and will pretty much last the length of time that they are needed to last whether swallowed or sprinkled. The problem that I have with my daughter is that she has a very high metabolism which is why she is so petite. As far as the medications affecting her appetite it actually works out perfect in that area since she does have a high metabolism she has breakfast before the first pill takes affect and has lunch after it wears off before she take the second pill and by dinner time the second pill has already worn off. I have thought about asking the doctor for a short release low dosage pill for the evenings but I just feel bad for adding another medicine to the daily routine since she does have to take a very low dose medication at bedtime in order to be able to fall asleep. If I add one more I would have a six year old taking four pills just for ADHD and ODD. I have a perfectly normal little girl on medication and a crazy child off of medications. It is not that I want her on medications so that I don't have to "deal" with her because I cry at times thinking about the medicines that she has to take (I'm actually crying as I am typing this lol) but I know that she also enjoys not being in trouble and being able to focus and learn and just have a good time being able to control her own actions. There has been a few times at night when she has cried and told me she was sorry for being "bad" (it's normally after her bedtime medications have kicked in). It breaks my heart to see her hurting or out of control and know that it really isn't her fault completely.

Maybe we will try the Mountain Dew tomorrow and if it doesn't help, we can just give the doctor a call. I guess there is no point in making everyone miserable including her by my stubbornness to not medicate her more.

Any more help/comments is appreciated.

Thank you,
Jennifer

 

[KTMom91]

Your daughter sounds a lot like mine was. When the Ritalin started wearing off after an hour, we switched her to Concerta. I also wonder if opening the capsules takes away the long-acting component...you might want to teach her how to swallow pills in order to get the full effect. I had Miss KT practice swallowing mini M&Ms, and had a extra tube for eating after practice.

 

[pepperidge]

I don't know what age my kids learned to swallow pills but it was pretty young,though not six.

We ended up giving my oldest an afternoon dose of Adderall for awhile. I think, frankly, you should feel lucky that you have found a medicine that works. If she needs another dose, and psychiatrist is willing to prescribe it, well that is what she needs. Have you trialed other stimulants? Maybe you would find one that would work longer.

by the way, my son tried the mountain dew route. Not good. Much more irritable on caffeine.

 

[smallworld]

Focalin XR is allowed to be opened up -- it does not affect the long-acting mechanism.

 

[bby31288]

I taught my to swallow pills using tic tacs. They were all swallowing pills by age 5.

 

[jlsanchez08]

I guess some of our posts ended up crossing by the time they all got posted on here but I do see where Mountain Dew made one child worse. Maybe today is the day I should let her have the Mountain Dew then, it's the day she goes with my ex and his mom to visit for a couple of hours hehe (just joking). I think I am going to call the doctor and see what he wants me to do and will update everyone later. Maybe she is finally at the age where she can start talking to someone (counselor, etc.) since people keep telling me that helps, but somehow I don't see how it helps if it is a chemical imbalance that causes her to act up rather than just an emotional issue. Any thoughts on thought would be helpful too. Updates to come later as far as medications and doctors opinions.

 

[TerryJ2]

Well, she is pretty young, but she's old enough, as you have indicated by her apologies, to know that something is askew.
So this may be a good time to start teaching her to recognize her own triggers, her own feelings, etc. and act on them. Or NOT act on them,
She can learn breathing exercises, and whether she could be excused from the table to go outside and do jumping jacks or something that will blow off steam and not irritate other people. I used to have my son run laps around the house.

 

[susiestar]

My son spent YEARS with various therapists and it had NO effect on his adhd symptoms or many of his other problems. Some of them he liked and would speak with, others he didn't and wouldn't. Usually as soon as it was suggested that he owned some responsibility for his actions and the results he decided he "hated" the therapist or the therapist "didn't get it" and he would do all he could to get us to switch tdocs (rarely worked). At no point did talking with a therapist have ANY impact on his hyperness or the destruction that happened during his hyperness. I have yet to find a therapist who felt that a six or seven year old was "old enough" to really participate in talk therapy. I have found play therapy (used during those years) to be exactly worthless.

I hope you get better results, but I don't know of anyone who found it helpful for the kids. It is more helpful for the parent to talk andlearn new ways to cope, in my opinion. If you haven't read/used Love and Logic Magic for Early Childhood and Love and Logic Parenting, I highly recommend them.

 

[Marguerite]

difficult child 1 got worse with Mountain Dew, as well as anything with caffeine. When "energy bars" came out claiming to contain a natural substance, guarana, difficult child 1 thought they would be OK. And guarana is loaded with caffeine.

Caffeine can sneak in via a lot of places. We found that chocolate was OK (I guess as long as the kid doesn't eat whole slabs of it) but caffeinated drinks and energy bars were the worst. Interestingly, difficult child 1 liked to drink commercial iced tea drinks and found problems with those too. We investigated and found that caffeine was at times added to those. It's not right, it's not added for any benefit other than to encourage you to come back and drink more of that drink because it makes you feel energised.

We found with difficult child 1 that his medications helped him a lot, but caffeine would eliminate any medication benefit - if he drank cola, he would rapidly begin to behave as if he had no medications on board.

Marg

 

[HaoZi]

My kid hated chewables and liquids so much she taught herself to swallow pills at a much younger age than I learned. You could try something lower in caffeine than Mountain Dew. All I think of these days when I see it is what the dentists call "Mountain Dew mouth" where the acid and sugar eats away at the teeth at the gumline instead of the more traditional cavities. True of any soda, but that one has a very high acid and sugar content.