2 years ago my daughter who is 6 now was diagnosed of ADHD and started with 10 mg of vyvanse but rapidly pass to 20 mg and ended up taking 40mg, one pill in the morning and at noon. And also take 1 mg of guanfacine Er to help her sleep at night which some time works or we need to give her melatonin. But almost 2 weeks ago she started taking methylphenidate 20mg because vyvanse was not working anymore and her teacher was complaining a lot about her behavior. But the rebond with her new medicine is really hard around 4pm when she doesn't have medicine in her body she is acting out of sort moving, climbing, impossible to have her attention and cannot sleep without taking 2mg of melatonin. With my husband we are pretty sure that methylphenidate is not helping her and can't wait to report it to her doctor. She also has a speech delay and struggle to make full sentences without me reminder her to use sentence beside of single or 2 words. She has speech therapy, OT and started behavior therapy recently but I really need some guidance about the medication because it is our first time to deal with a adhd and speech delay kid in our family. I really need to calm her down because with all the agitation it is difficult for her speech therapist to work with her and she really need to develop this area.Thanks
Need some guidance : 2 years ago my... - CHADD's ADHD Pare...
Need some guidance
Is she still taking Vyvanse, or is she off it and now on methylphenidate as a new medication instead? And what type of doctor is prescribing her medication? I’m asking because usually Vyvanse is given only once daily. How is she doing making friends and with learning at school?
She is only taking methylphenidate now and it was prescribed by her regular physician and we are still waiting for her school teacher feedback about the new medicine.
can she do speech therapy early in the day, when she might be better able to pay attention, or maybe after vigorous physical exercise? I understand the challenge—I have a daughter with severe speech delay and significant ADHD. It is slow progress for sure. Does your daughter have any favorite things like horses, unicorns, etc? Sometimes if you can tell those to the speech therapist they can incorporate those themes into the therapy to hold her attention better.
Unfortunately, the only time she can work the speech therapist is after her school and she is always full of energy but I will tell the therapist about the topic she likes. Thanks for your help
Is the methylphenidate ER as well? We have experienced a lot of rebound with methylphenidate and dexmethylphenidate as well, compared to Vyvanse. It's especially hard on school or full day camp days, and it affects everyone in the family. The only thing we've found that works, from our therapist and psychiatrist's advice, is moving more activities to the weekend and making sure there's unstructured downtime or free time with few expectations when our son gets home (7 years old, ADHD). Hang in there! (He has speech therapy as well for some articulation issues.)
Yes, it is methylphenidate ER. Unfortunately, all the places she goes like speech therapy or OT are only open during weekdays, and that makes things really difficult, but I like your idea for free time with few expectations. If you don't mind, does your son still take methylphenidate?
Now he takes dexmethylphenidate (Focalin) after trying Vyvanse but we still are having a lot of issues overall, especially with the rebound, unfortunately 😬
Sorry to hear that and I hope things will be better for your son. Thanks
Have you tried a detox? Try medical medium’s Cleanse to Heal for 10 days and see if that’s more effective than all of the medications. Does she have the MTHFR mutation? She may need extra folate and b12… how is her vit D? Magnesium and IRON levels for sleep?
Not yet, and definitely, I will suggest that her doctor run some blood tests and see if she has some deficiency. I saw some videos about the detox, but I gave no idea how to do that, but I will have a look at the medical medium's cleanse. Thanks
You are wise to seek some blood tests. Children with ADHD tend to have a number of nutritional deficiencies that exacerbate their symptoms. Finally Focused by James Greenblatt is a great resource on this.
A genetic test (Genesight or other) for the MTHFR gene is also a good idea - it’s just a cheek swab. A full ADHD genetic panel will tell you which medications aren’t likely to help your daughter and will indicate certain gene mutations. My son also has the MTHFR mutation, which makes it harder to use folate which is critical for neurotransmitters. He is now taking a high potency prescription multivitamin with multiple forms of folate (EnLtye) and it has really helped his irritability & aggression.
Hang in there!
Thanks for your help
I’m so sorry to hear that your doctor prescribed drugs to a 6 year old before running blood work. Please seek second opinions from other doctors… and if you’re open to it, try a more holistic or naturopathic doctor. Detoxes can absolutely help speech delays. Every drug you add to her body creates more work for her liver and endocrine system.. and some (can) carry lifelong downstream effects on everything from her brain development, growth, and even her fertility later in life. (Speaking from experience) marinecyan ‘s advice above is perfect - get the tests and supplement with folate (NOT folic acid) and b12 (and whatever else her blood work shows she needs more of) first, then use drugs to help as needed once her underlying deficiencies are addressed
I would really caution people about MTHFR testing. Those mutations are very common and there is no evidence they are associated with ADHD or autism, or that testing or diet changes based on those results are recommended with regard to ADHD or autism. I would at least consider using your money for evidence-based treatments instead.
checkupnewsroom.com/a-pedia...
Isn’t more knowledge about your body always better, especially as it relates to fighting an illness? Beware of doctors who are quick to prescribe stimulants and sedatives. They aren’t curing anything with vyvanse and adderall etc. How is your sleep? How is your diet? How is your stress? What do your genes tell us about your inclinations? (epigenetics is still evolving but we know you can absolutely influence your gene expression through lifestyle). Learn as much as you can about your body and possible causes so you can help treat yourself. Deficiencies are SO common these days with our modern processed food diets. Consider starting with your DIET and supplement to achieve balance from the inside. If you’re feeding your kids cereal for breakfast, Mac-n-cheese for lunch and some other processed food for dinner perhaps you are adding to their struggles? Invest in their diet first, then doctors and drugs.
Well, I’m a doctor and I can guarantee you none of us are lazy or else we would not have graduated and finished residency. I understand you are not interested in medication for your child. Medication is, though, along with behavioral strategies, the recommended and evidence-based treatment for children age 6 and older for ADHD. This is according to the review of current evidence by experts from the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry. Of course, everyone on this board is welcome to seek whatever treatments that interest them. Medication is not some “failure” on the part of a child, parent, or doctor. No one goes on medication because they are lazy or don’t want to work hard. No one with ADHD is lazy. Everyone with ADHD works 10 times as hard as people without it just to get through a day. Why set a child up for: low self esteem, substance use, unplanned pregnancy, being bullied, lower educational attainment, school suspension, relationship problems, suicidal thoughts, need I go on? My colleagues and I prescribed generic medications for almost everything, in addition to for ADHD. We certainly were not shills for Big Pharma, and my workplace had a no drug reps policy. I haven’t interacted with a drug company sales rep in 24 years. My own children have not taken a brand name medication for ADHD in years. And trust me, every pediatrician I know would be overjoyed if a simple nutritional intervention would fix their patients’ ADHD. I would be first in line to take my kids off medication if changing their diets, using nutraceuticals, removing food dyes, using Feingold, etc would work. I don’t think the medical evidence (high quality evidence) is there. And neither does the American Academy of Pediatrics or the US child/adolescent psychiatry organization. I’ve heard these arguments before—-we pediatricians don’t get trained in nutrition, etc. I have some training, and I have colleagues in Developmental-Behavioral Pediatrics. They also do not believe the evidence supports these nutritional interventions. The nutritional supplements do make good money for the companies and naturopaths who sell them, though. And some families have to feed their kids processed foods sometimes for many reasons—-having to work 3 jobs and no time, insufficient money to buy healthier options, living in a food desert, lacking knowledge of cooking and healthy food preparation, kids with autism and very restricted feeding habits, etc. There are many factors that combine to influence families’ situations and decisions. I think healthy, unprocessed foods are awesome. I don’t think they alone will fix a brain based neurodevelopmental disorder.
I 100 percent agree with you. Medication has quite simply changed my daughters life. I was so resistant at first, until one OT told me ( after completely failed attempts with OT twice), that some kids just need medication. Realize this isn’t the right choice for every family but it has benefited my daughter in many ways.
With respect to MTHR, I have this (found incidentally on bloodwork) and at least for me, this has not impacted my behavior in the least. I was told it might be linked to future cardiovascular issues but I’ve known about this for over a decade with no ill effects. But vitamins are always good for general health.
PS Stimulants are only “uppers” to a non-ADHD brain. If someone gets a high from a dose, they don’t have ADHD. That’s not how they work. They should never be considered an “upper” in treatment of ADHD and just using that term means you might benefit from reading more about appropriate use of them. I’m sorry if you had a very negative experience.
No one is saying medications are cures for ADHD. When the medication wears off, the person still has ADHD.
The methylphenidate ER may only work for 8 hours. If so, ask her doctor if giving a regular methylphenidate tablet at 4 PM will help with behaviors till bedtime.
yes, this is another option. We did this when our son couldn’t increase the ER dose
We also did this but when out son was younger ( he is 16 years old now) the "booster dose" was less that the AM dose. It was the only way to help him with tutoring, chores and sports. He was very successful, we could tell when his am dose wore off.
Hi Purple008,
So sorry you are experiencing so much trouble since the medication switch. Whenever we have experienced trouble with medication switches for me or my son, I’ve been able to call the nurse and they have prescribed something new so you aren’t waiting until the next appointment. Is that a possibility? The laws may be different in your state.
Also, I’ve heard Dr. Ned Hallowell recommend on a podcast to take a break from the medication when it stops working (5-7 days) and then restarting it. Many times that’s effective. It may be worth going back and trying what was working for her.
Hope you find some solutions soon!
I think in my state, ADHD medicine prescriptions need to be approved by the doctor, but I will ask for more info about that. I really appreciate your advice about taking a break to make the medicine more effective, so I would definitely try that. Thanks for your help
For us we have been able to have the nurse get the doctor to prescribe.. the nurse is the go between.
If I were in your shoes I would ask for an increase in both ( I hope she is still taking the Initiv and methylphenidate together). Our son needed a higher dose than regular. We used methylphenidate am and afternoon for tutoring and sports and Initiv am and pm.
Our child psycharistist said the medication should stop 60% of the symptoms from the ADHD.
We have moved the Vyvanse and our son says he feels like he is not hungry all the time and while Methylphenidate he did not feel that way.
Hope this helps.
Guanfacine is only at night and we are still waiting for her doctor decision about this new med. Maybe he will move her back to vyvanse. My daughter is not a big eater and ADHD medication makes things worse 😔. Thanks for your answer
PS Our son is very skinny (BMI 0-1%) and his psychiatrist has us give him a high fat, high protein snack at bedtime (Eg peanut butter on crackers etc)
Her doctor suggested us to make sure that she eats before going to school and when she come back to help her not losing weight.
It’s tough! Our son never lost weight, but he is not a huge eater & the medicine decreases his appetite at lunch. Sometimes making a high calorie drinkable lunch on weekends because we had time (full fat Greek yogurt with honey, banana, cocoa powder—in blender) has been another trick if he didn’t want to “eat” a lunch. I worried less about a perfectly balanced diet & just got calories into him.
I will try to do the same. Thank you
Peanut butter has been amazing for our son. We even use the powder in his smooties.
are you aware of the monarch ETNS device that has been FDA cleared for children ages 7 to 12 with ADHD? I did post about it, but I am happy to provide more information either here or separately and I’m also happy to talk to you individually if you would like. I worked on the research at UCLA and I am also involved with the company who developed the device to help disseminate it into the community for providers and families to learn more about it. It’s always a difficult time and a challenge to disseminate any kind of research from the research lab into that community once it is approved especially if it’s FDA approved. We are a small company, so we don’t have a huge budget for outreach and we do acknowledge that Chadd is an excellent opportunity to reach families directly. Anyways, let me know if you would like more information about the device and I’m happy to provide.
how often does she exercise/meditate? Those can help keep your kiddo grounded emotionally and learn to take breaths if agitated. Also, my partner is on vyvanse and has dextroemphetamine as a booster at lunch because when the med wares off fast it made him agitated. We have had to have my kid on melatonin at night for years, and will be trying to wean her off this summer, and myself as well for my sleep aids. My partner calls speech issues “data bursts”, and had to have speech therapy as well. It helps to take a moment to breath and ground yourself before things like that.
I thing we need to work on making her doing more exercise because meditation will be the hard one to try. Thank you
meditation definitely is hard at first, especially for the adhd brain. There are kids meditation videos I’m sure, and my kid and I love the calm app. There are so many options, actually... I just checked the calm app again and they said there’s Stillwater there from apple+. It has kids do things like “tense everything up, and now relax like you’re melting like an ice cube”… sounds a bit more engaging but to think about sensing your body. You could even do it with them and if they get mad for doing something not expected, just try again. I had to Reyes h myself not to judge the mistakes. It’s all about trying again.
oh… and what works for me is a few sprints, jumping jacks (aerobic exercises) and it helps me to not spend as much time letting the energy out over reacting and being emotional during a meeting with my supervisor.
Our son was very successful in Tae Kwan Do.. no matter how bad school/life was we never took sports/exercise away.
exactly. Kids with adhd need the physical outlet more than most.
Dear Purple008:
Thank you for contacting CHADD's National Resource Center on ADHD. I understand that you are struggling with your daughter's behaviors and are still trying to figure out what medication may best help with her symptoms. In addition to medication, have you tried behavioral therapy? Medication is not the only recommended treatment for ADHD but used with behavioral therapy can be most effective. Here is some more information about behavioral therapy: chadd.org/wp-content/upload....
Additionally, if you are considering using supplements, it is best to contact your child's doctor before you do so as there may be drug interactions. Good nutrition, proper rest, and ample exercise can go a long way in helping with symptoms of ADHD. Here is some more information about alternative and complementary treatments: chadd.org/about-adhd/comple....
If you decide to get genetic testing done to see if your daughter has the MTHFR gene, please be aware that there hasn't been enough research to determine if this type of testing is effective and most health insurance plans will not pay for it. Here's some more information about the testing: understood.org/en/articles/....
If you have further questions, please let us know.
Sincerely,
Jami
Admin
Health Information Specialist, Manager
CHADD's National Resource Center on ADHD
chadd.org
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