New to ADHD, need some help

[amsafko]

Our dd7 has just been started on Vyvance (started today). She is taking 20mg. to start but the dr. said she would need to have it increased after a week or two. Anyone have any experience with this med.? Is 20mg. too small to notice any changes right away? I am really struggling with doing this but this was not something we did without careful thought and consideration. Her problems in school revolve solely around her behavior. She's very smart so she does above average work but according to the Conner Scale we did with the teacher she is highly distracted, impulsive, has social problems and is defiant.

Any help, advice or info on the medication would be so, so appreciated.

Thanks...

 

[mechurchlady]

WElcome to the board, amsafko. I am here to welcome you and tell you that others will eventually be around to help you out. There is even a very very kind and smart registered nurse on this board.

Check back tomorrow morning or late tonight and you should get lots of answer.
I will put out the coffee and leave you lots of hugs and pixied dust.

Hugs and welcome to disAbilities
Laurie

 

[Belle & Ariel]

My DD 19 was diagnosed in Feb and on Vyvanse. She started at 30 mg and is now on 60. Our pediatrician said they start low but that only a small minority require the low dosage. We do not feel side effects and she finds it much easier to study.
My daughter noticed a change the first week, but it was not the miracle we had hoped for and the adjusted dosage seems to work well.
The frustration I have is that in our state we have to go to the doctor's office and pick up the prescription each month and take it to the pharmacy--no call ins or faxes; no auto refills. We will be at WDW when we need a refill but it cannot be filled out of state. My son is diabetic and his prescriptions are good for a year and so much easier to fill.
My only advice is that you might have to remind her daily to take her pill. I know my DD still forgets sometimes and she says she can really tell.
Good luck to you and your daughter.

 

[bookwormde]

Welcome,

It sounds like you are starting with the minimum dose so that is good. It is important to have read the full Phyicians desk reference section on the medication your child is taking since in this class of medications there are many subtle issues that you need to be aware of, especially since some of the potential side effects can be quite dangerous.

I am assuming that you physician explained that these medications only help with “symptoms” and have no direct benefit for changing the underlying cause.

It is also very important to continue with all the supports and skills development that you have been trying before you went the medication route.

The hyperactivity that is part of the clinical ADHD diagnosis will generally show relatively immediate changes. The attention improvements are secondary and somewhat slower.

I hope that the clinical group that evaluated your child ruled out all other possibilities such as ADD, Auditory processing issues, Sensory issues, and other neurovariations, which this class of medication is generally contraindicated for some of these. This is especially important since you mention social difficulties and these medication even if there is not a serious negative emotional reaction can sometimes mask the true issue which often leads over time to heightened anxiety and some very serious co morbidities.





bookwormde

 

[BeckyScott]

The reason that they're such a pain to have filled, going to the dr's office every month and no refills, is because it is a Controlled Substance and the dr can't do refills on it.

Not to scare anyone. But it's serious meds. Think of all the meds people get that they get a year's worth of refills, some pretty heavy-duty meds. Many of the ADHD meds are at a whole different level. Some aren't, I am thinking Straterra isn't like that? That's the only one I can think of off the top of my head.

And the common side effects, like the weight loss, need to be monitored closely at the beginning. When youngest DS was on Concerta, we had to stop it, pull him off, because he stopped eating. Oldest DS is probably under-dosed at this point, but we're keeping him that way, because a higher dose brought out bad behavior problems and also interfered awful with his sleep.

There was also a problem, or still is a problem, with older kids selling their meds to friends. Quite a market with the college crowd. So they need to be closely monitored for that reason, too.

ams, I'm sure you were already told this, but you need to keep track of her behavior and symptoms while the dosage is being adjusted, and keep in contact with her teacher while she's still in school. The dr is going to need to know what dosage to go to, where to stop, and will need lots of input from you about how she's doing. It's also possible that you'll find a dosage that works for the summer, but you'll need to re-evaluate when school starts in the fall. Usually kids just aren't required the same level of concentration over the summer, and since she's just starting it, it will be hard to tell right now what the proper dosage will be. Explain to her as best you can, exactly what the med is and what it does, so she can tell you how she feels.

We had taken oldest DS off Adderall and went to Straterra for a little bit (trying to work around the sleep problem) and about a week into it he told us that he didn't like it, it made him feel funny in his head and "not like myself", (and having taken anti-anxiety and anti-depressant meds before myself, I think I knew what he meant by that, even though he couldn't find the words) so even though the Straterra had some benefits from a medical standpoint, he was better with Adderall.

It's all very much a trial and error process. The good part is that most of the trial and error will occur while she is at home with you, and not at school where they won't understand as well.

 

[Brightsy]

My DS9 (be 10 in about a week) was DXd ADHD in kindergarten. He's been on Strattera and Concerta and now he's on Focalin. He's been taking the Focalin for almost 3 years now. It took a lot of playing around with the meds and the doses to find something that worked well. It must be working for him. He's an Honor Roll kid, has made Student of the Month at least once every year he's been in school since the 1st grade. (He's in the 4th now.)
(DS7 decided his big bro needed the thumbs up)

 

[amsafko]

Thanks for your responses. We are looking into finding counseling for her (and us as a family). Largely to help her learn better coping mechanisms to deal with frustrations and I know I need help in how to guide her. I am so pained by all of this, the decision regarding the medication is very hard to come to terms with given the types of meds these are. I feel like a complete failure as a mom (not feeling much like celebrating Mother's Day today given how I feel).

Do these meds help with the impulsiveness? The reason I ask is because I believe some of the social problems she has relate to her impulsive nature. She will always be strongwilled, she is definitely a take charge/leader personality (which can equate to bossy at this age). However, she blurts things out (to kids who are her friends and she doesn't mean to hurt) that I think come from her impulsive tendencies. I've tried all kinds of techniques to help her and she says she gets it and will stop herself, but in the moment she just loses that control. The school counselor said that the problem is that our daughter knows all the rights answers (what is appropriate to say, what isn't, what to do when frustrated, etc.) but in the moment loses it and acts on impulse. All I want is for others to see the beautiful side to my daughter that we know is there - okay gotta stop, I'm going to cry and can't do that right now....anyhow, thanks for the support and any further advice anyone might have.

 

[meggymouse]

I am 24 and I have been on meds for awhile now. The meds help the most but there are also tips and strategies that can help. I have a planner/agenda that I carry with me all the time. It's my life line. It helps me feel more in control when I have 5million things going on inside my head. In school I would write down all my homework assingments. ANd at first I would have have the teacher look in it everyday to make sure I had written them all down. It's hard at first but once you get the hang of it, its been one of the best things besides my meds to help me overcome the adhd.

 

[pudge the fish]

no advice BUT... please don't feel like a failure-
things happen that are not in our control and we give lots of here and there are so many who can help you!

Sending :

 

[bookwormde]

Do not “beat yourself up” about your parenting abilities. As long as you love your child and do the best you can with the knowledge you have at the time, regrets are of no value.

One thing to remember is what you call “impulsiveness” often comes from significant “wiring” (neurovariations) differences and commonly is from a lack of innate (genetically imprinted) social skills which average children are born with. For average children thoughts go through a “social filter” before they “come out”. For children with who lack or have decreased innate social skills this does not exist and all filtering has to be done “intellectually”. While this works adequately during familiar, less complex and stressful times, when this is not the case things come out or happen which are not “socially appropriate”.

I think there is a reasonable chance that you have something else or more going on here than ADHD.

The best thing you can do as a parent is to be informed as to all the possibilities. My first recommendation is to read “The complete guide to Aspergers” by Tony Attwood C2007. It should be available at your local library, if not it is available on Amazon for about $25. While it was written about Aspergers it is a good reference for all the “pieces” of neurovariations that make up Aspergers, of which lack of innate social skills and its relationship to impulsivity is one.

The good news is that from your description your child does not suffer from some of the serious anxiety issues so that puts you ahead of many dealing with these issues. If that had been the case it would have been time for a full clinical evaluation.

bookwormde

 

[Brightsy]

I'm almost 39 and I'm ADHD. I was on Ritalin back in the day. My ADHD son and I share the same things. As a child my impulse control was low, so is my son's. It's a trait of his ADHD. Things happen so fast in his head that he has harder than normal time of controling his mouth. He knows all the social norms and issues, it's just that when he sees something or thinks of something he wants to comment on or ask about it tends to go from thinking to talking in light speed.
His meds to help him w/ his impulse control...sort of. The meds calm his system down and gives his ability to stop and think a little bit of help. That paired with some therapy and social stories helps him. He understands the nuances of the world, he's just stuck in hyperdrive.

 

[mechurchlady]

Adding to what bookworm said.

Your child is a neurovariant just like I am. Neurovariant is a person with a brain that is not wired like the normal brain is wired. The problem with neurovariants it that there are no x-rays, blood tests, or other things to say what a person has wrong with them. A scientist can take cells and tell you what type of cancer a person has or can do a blood test for sickle cell anemia but with neurovariants that is not possible.

I say I am a neurovariant as I am one but what I am is not always clear. There are many disorders and syndromes and such out there and too often kids are labeled wrongly. You are on a journey of sleuthing out the causes of everything in your child's life like a scientist. You have to find out why she does what she does. It is a hard and daunting task ahead of you but God never gives us more than we can handle though I have hit points where I argue with God about such matters.

My mom needs order and quiet and no stimulations. She controls her life by telling me to do mundane things like close the front door and turn off the porch light. When she controlled the kitchen she would control me by telling me what was in the fridge. She needs to control everything because of her hypersensitivity. I know the source, hypersensitivity, therefore I can treat her differently than a person who is just a pain in the neck.

You should take your daughter to a neurophychiatrist who specializes in autism, spectrum, OCD, ODD, ADD, and other neurovariations to see what she really has. It is common to stamp labels on kids especially the littlest ones. You will need to look at the whole picture like food issues, sensitivity, sleep patterns, and quirks. Definitely keep a diary so you can track anything unusual.

http://www.sensorysmarts.com/signs.html
This is a starting point for seeing things that you might even not notice as being a deviation from normal behavior. One or two things is not uncommon but when you have 50% or more then you need to see someone about it. I am about 90% on most SID/SPD lists.

 

[GraceLuvsWDW]

I reccommend the book: Understanding Girls with AD/HD by Kathleen Nadeau. It helped me greatly in understanding the difference you often see in girls with AD/HD. It has tips on medications and dealing with the educational system.

Good Luck!

 

[lizet313]

Welcome you will find a lot of useful information here in Disboards. I don't have any kids but I do have a nephew that has ADHD.

 

[GraceLuvsWDW]

Thanks for your responses. We are looking into finding counseling for her (and us as a family). Largely to help her learn better coping mechanisms to deal with frustrations and I know I need help in how to guide her. I am so pained by all of this, the decision regarding the medication is very hard to come to terms with given the types of meds these are. I feel like a complete failure as a mom (not feeling much like celebrating Mother's Day today given how I feel).

Do these meds help with the impulsiveness? The reason I ask is because I believe some of the social problems she has relate to her impulsive nature. She will always be strongwilled, she is definitely a take charge/leader personality (which can equate to bossy at this age). However, she blurts things out (to kids who are her friends and she doesn't mean to hurt) that I think come from her impulsive tendencies. I've tried all kinds of techniques to help her and she says she gets it and will stop herself, but in the moment she just loses that control. The school counselor said that the problem is that our daughter knows all the rights answers (what is appropriate to say, what isn't, what to do when frustrated, etc.) but in the moment loses it and acts on impulse. All I want is for others to see the beautiful side to my daughter that we know is there - okay gotta stop, I'm going to cry and can't do that right now....anyhow, thanks for the support and any further advice anyone might have.

My daughter also has the impulsivness you refer to. I have had many sad moments dealing with her depression over the fact that many of her friends no longer play with her due to her impulsiveness: hurting them or saying mean things. We go to a Child Psychologist. He has given me many techniques to deal with her impulsiveness. One thing that has helped is to get a white board and put it on the refrigerator. On the whiteboard you can put different levels-like a spectrum of feelings such as Happy, Frustrated, Sad, Impatient, etc. Ask your daughter to go and place a magnet next to how she feels several times a day. This "trains" them to get into the habit of defining their feelings and checking inward to evaluate how they feel. With my DD she has trouble recognizing when things are about to erupt or become bad. I am trying to teach her to recognize how she feels before that happens. Also, as painful as it may sound, he has also counseled me to stop "policing" and "counseling" my daughter and her friends when she becomes abusive. Sometimes the greatest teacher is the effect that the children have on your daughter when they go home or refuse to play with her. While it seems mean to us as adults, it is a good lesson to your DD to have the appropriate and immediate consequences of her actions. A talk quietly later with her where you might ask questions such as "why do you think they left?" or "what do you think you could've done differently to have them stay?". I am very careful not to overdo these conversations or they give reinforcement to the negative behavior. These kids are wired differently, they react and think differently. If you can adapt your dealings with her to that "different" mindset you'll have better results.

As far as the medication goes, we have tried a few AD/HD meds to no avail with my DD. The side effects were too awful to justify the slight benefits so I can't really help you on this. My DD does take Paxil to help with her anxieties but that is related to her other issues, not the AD/HD. The other posters on this thread have helped me a great deal and while I do not think every AD/HD person has these other issues I do believe it is a group of disorders that are closely related and sometimes have overlapping symptoms. I will say this: I struggled very much with the decision to medicate my DD. I know what you're going through. It is a very serious decision and only you (not your Dr) can make the decision on what's best for your DD. I've come to learn that the "system" has (most of the time) an approach to these issues of lets start here, if that doesn't work we'll try this, and so on and so on. As the PP mentioned, it's not an exact science but those who have the experience with one of these children KNOWS as a parent that something is very, very different.

Good Luck! Continue to reach out for help because the journey is full of bumps, bruises, but also wonderful moments!

 

[ireland_nicole]

Both of my kids have significant neuro issues/quirks, etc.

DS (6) was born w/ a brain malformation; at this point he has made unbelieveable strides, but he did need to start focalin last summer. We have seen a huge difference in him; we had worked for over two years to teach him the alphabet with no retention or success; within a couple of months on the Focalin, he knew his letters and sounds, and was starting to read. He's still very impulsive, he is still very easily distracted; but the meds give him "just enough" help to make progress w/ his diet (feingold), behavior mod, therapy and tight structure.

DD (9) has ASD, ADHD, visual perceptuall processing disorder, seizure disorder, a coordination disorder, etc. etc. she is on Methylin (she doesn't tolerate extended release meds), trilyptal (for seizures), Risperidol and allergy meds. We didn't want to medicate; but in order for her to function she needs them; in the same way that she needs her seizure meds to prevent that, she needs her other meds to help her focus and have better self/impulse control. Of course she also has behavioral therapy, social therapy, ot, and is feingold. She says she feels better, and that means a lot to us. Since getting her meds "right" for the minute, she has been able to identify feelings, and is starting to initiate simple social interaction. We really have made great strides.

My point is, I am not a proponent of meds for every kid in every situation. But I also don't think that because a child needs meds they have bad parents. Frankly, I think I'm a pretty good mom. (you have no idea how much therapy it took for me to just say that lol) I'm not looking for an easy out; I'm willing to consider every appropriate treatment for my kid. You are making choices for your child that in your heart you know are right. I promise, you're doing better than you think; and feelings of failure are completely normal. It's a constant emotional balancing act. I really think one of the most important things for you is to find a good support network of other parents in a similar situation who you can be really honest with. I think you might be surprised to know that we all probably feel the way you do some times.

 

[amsafko]

Well I'm back (I'm the OP). So, after 1 week on Vyvance the school (aides and teachers) say she is calmer and quieter. Her teacher said she hadn't realized just how loud our DD was until she was quieter. We've noticed that she can sit and watch something on TV with us and not be moving around all the time. She was doing much better controlling her reactions to things. Today is an exception, she did have a major fit but I helped her work through it (not perfectly, but I did the best I could). I just felt good finally getting some positive news. We now wait a week longer and then the ped. is going to up the med. a bit. I'm having a heck of a time finding a child psych. though, the ones my insurance covers are all booked.

For those of you who do the Feingold Diet, do you see much difference?

Thanks again for all the feedback,

 

[bookwormde]

I know this is not what any parent wants to hear but waiting 6 months to get an appointment with a highly qualified and competent clinician beats 1 month for a marginally competent clinician.

bookwormde

 

[rodeo65]

I know this is not what any parent wants to hear but waiting 6 months to get an appointment with a highly qualified and competent clinician beats 1 month for a marginally competent clinician.

bookwormde

Had to jump in on this comment. DS8 was diagnosed with ADHD and SLD by a highly recommended psychologist last October and initially we worked with she and the school on modifications within the school setting while at the same time waiting for a referral to a paediatric psychiatrist of her choosing. While the ILP did some good in the end we were really waiting for the med assessment to get underway.

In the meantine, early this spring, wanting to get things under control before beginning third grade and having some time over the summer to solidify some of the concrete math facts etc. needed, we tried going through the GP's office. They had a child psychologist on staff for this purpose. I had three phone consultations with her based on the initial diagnosis report from the previous fall and she was ready to prescribe. She had never even laid eyes on DS but she was good to go with the Rx.

DH and I were really uncomfortable with this and so we pulled back and waited for the referral to come through. In the 5 weeks since he has had that referral and has been on meds life has changed dramatically. He was prescribed Biphentin for his inability to swallow capsules because it is one that can be pulled apart and sprinkled on food. He was started on 10mg and has progressed to 15 and finally 20 to get adequate concentration and control. His dosage range would be 10-80mg so I am happy to have enough result on a relatively low dosage.

We were so used to him before meds and he started out so low and increased every two weeks that we kind of missed how dramatic the results were until I slept in one day and missed the time for his dosage. If he doesn't receive by 8am we skip it since he can have trouble falling asleep. Reliving what it had been like pre-med really drove home how much he needs this to help him. He has said it's like the static on TV has been turned off.

I have seen an interesting post here about decreasing dosage over the summer since full concentration is not needed, just modification. That will definitely be something to discuss at his followup appointment next week since so far I had only ever heard of on meds or off, not lower dosage. Thanks!

Good luck on your journey with your DD!