I come for your help and expertise again I'm afraid.
My 9 year daughter and I were taken off the Stimulants in the end none worked at all and in my case made me really ill.
And so onto the nonstimulants and Guanfacine, we were both started on 1mg a month ago.
Neither of us have noticed any obvious ADHD benefits yet however we are sleeping better and my heart rate has come down a bit and it was generally really high so the decision was made to go up to 2mg. We will start that tomorrow.
But my daughter has started clearing her throat pretty much every few minutes. We noticed it a couple of weeks ago but it is steadily getting worse. Its now almost continuous.
This is our 3rd drug, it's getting so expensive and we really wanted to find something that could help her while she was young but I'm really worried by this tick.
Does anyone have any experience of this with this med? Do you know if this is a sideeffect that is likely to wear off or maybe get better on a higher dose?
We were keen on Guanfacine bc I read it can help with RSD which we both have and has destroyed a lot of my life, I'd hoped we might have been able to save her from that 😔.
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It seems that a little more than half of the people taking guanfacine, experience xerostomia or dry mouth this seems to reduce to 4% when using the “extended release” version. This might be the source of the urge to cough. Speak to her doctor to rule out that it’s being caused by anything else.
Two forms of guanfacine tablets are available: guanfacine immediate-release (IR) and guanfacine extended-release (ER). Guanfacine IR treats high blood pressure, while guanfacine ER (Intuniv) treats attention deficit-hyperactivity disorder (ADHD).
Guanfacine side effects most often include sleepiness, dry mouth, and dizziness. But it can also cause headache, constipation, and stomach upset. Specific side effects can vary between the two guanfacine formulations.
Guanfacine isn't known to cause many severe side effects. But you shouldn't stop taking guanfacine suddenly. Doing so can cause severe headaches, confusion, and quick rises in blood pressure.
Ah that's interesting we are on Intuniv. Maybe the cough is in part because of the dryness. We should have had her drinking more fluids to help her blood pressure anyway.Weirdly she's been so much better today, hardly cleared her throat all day. Obviously stress would make it worse but she doesn't normally find school that stressful at the moment so I'd be surprised if it just being Saturday would be enough to make such a dramatic difference.
The weather has an impact on dryness. If the weather has been damp and rainy, it might be a relief and this can be duplicated during dry weather with a humidifier. Or in a pinch…maybe boil a pot of water, like in the olden days, for a quick boost of moisture in the house. lol. My mom would put water pots on the metal old fashion radiators during the winter.
my daughter started tics with a stimulant medication. Guanfacine didnt work for my partner nor my stepkid. Both got light headed and my stepkid feinted. It was then that we learned that it was initially a blood pressure medication. Have you tried a genesight test by chance? I wont tell you what medication will work with your kid, but it can tell you which medications you will have adverse d=effects and how extreme those side effects should be.
We haven't tried the genetisight test, spending more money makes me nervous. We read the average ADHD patient takes 2.4 meds to find their right med and dose I'm at 3 and she is at 2 so we were hoping the end might be in sight...She hasn't got dizzy and it's made my blood pressure better than it was so that's not too much of a problem at least.
that medicine is an expectorant which means it’s going to make her cough up whatever is in her lungs so she doesn’t get pneumonia. So coughing is normal with this medication you want coughing. Hope that helps.
Something to keep in mind is that the first several weeks on a medication are an adjustment period for the body. Initial side effects might fade and might even go away entirely.
Consult your daughter's doctor, and make an informed decision about whether to continue or cease the medication.
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There are now more ADHD medication options than ever before, including more non-stimulant options than ever before.
Qelbree is a new one. (I think it received FDA approval 2-3 years ago.) It is classed as the same type of medication to Strattera (they are both SNRI s... selective norepinephrine reuptake inhibitors). Reporting on Qelbree is that for many patients, it starts working sooner, generally works better, and has less side effects than Strattera. Qelbree is specifically approved by the FDA for treating children.
~~~~~
A note on kids...
• Since children go through a series of developmental changes throughout their youth, their ADHD symptoms and their response to medications will almost certainly change over time.
• In girls, the onset of puberty can have a profound change. (The same goes for boys, but it's my opinion that the change is usually more prominent in girls.) ~ Then again, my own observation is based on my older kids: my eldest daughter (now 30) went through an extreme behavioral change with the onset of puberty and lasted through her teens; my older son (now 22) went through a much milder and more gradual transition. She has Hyperactive-Impulsive traits, and he has Inattentive traits, but neither has an ADHD diagnosis.
~[I also have an 11 year old son with mild Combined ADHD traits and a 9 year old daughter with mild to moderate Inattentive traits; neither of them is diagnosed either. Time will tell how they will develop, but their mom is opposed to having them assessed for ADHD, even in light of my diagnosis.]
It's very interesting that your daughter started the compulsive throat clearing after switching from stimulants to Guanfacine. It's listed as a possible side effect of Adderall (and possibly other stimulants).
I have no experience with Guanfacine, but I'm willing to try it because of how it can help with emotional dysregulation. (I experience having mild anxiety most of the time. Anxiety medication only helps when it gets severe.)
• It might help some people with improvement of ADHD Inattentive and Hyperactive-Impulsive traits, but it's most notably helpful with the emotional traits of ADHD.
• Guanfacine is often prescribed alongside a stimulant medication or a non-stimulant used to treat ADHD. I remember reading a couple of years ago about it being prescribed alongside Wellbutrin (bupropion, which is classed as an antidepressant) to treat ADHD.
~
Compulsive throat clearing is not listed as a potential side effect of Guanfacine ...but that doesn't mean that it's not the cause.
One thing that's known is that each person will have a unique response to psychoactive medications. Some people will have side effects which are not listed in the official literature. The side effects listed are usually the ones which are most common according to official studies.
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My own daughter and I both developed a cough about a month ago, and in our case I recognize that it's due to allergies. We moved from the Northwest to the Northeast U.S., and there are lots of new plants here that we weren't exposed to or much less exposed to where we moved from. I noticed the the coughing started the same week that everything started to bloom around here, and our neighbor's tree is from a family of trees that are a more common source of allergies.
• I'm 49, and she's 9. That proves that you can develop new allergies at any age.
So, keep in mind that coughing and throat clearing behavior can have either a biological or neurological cause.
Has your daughter experienced any change in the amount of throat phlegm? Or did the behavior appear without a change from her usual mucus production?
In addition to coughing, my daughter was also blowing her nose a lot. (Her mom thought it was a respiratory infection at first, because this particular daughter, our youngest, has been prone to responding infections since birth. But once the symptoms passed the two week mark, I was even more sure that it was allergies. The blossoms have been dropping lately, and her symptoms have been becoming less severe...so that just confirms it for me.)
So, it's worth considering whether your daughter is experiencing allergies. (I think that some medications can affect the immune system, too... potentially increasing allergy response. I'm not a doctor, but I think I've heard that. I just don't know if Guanfacine is a medication which can do that.)
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One concerning thing about tics that develop from a psychoactive medication is that sometimes they don't stop after discontinuing the medication that caused them in the first place. I think that's the exception, and that they usually come to an end after ceasing to take the medication.
Yes it's particularly difficult to find anything about Guanfacine causing tics because it's normally used to treat tics, google can't differentiate.I've written a couple emails to the prescribing nurse but she is yet to get back to me. Because of its effects on blood pressure you are not supposed to stop it suddenly but I think we'll have to stop it just to see if it makes any difference to the throat clearing.
She doesn't seem to have hay-fever, no running nose or itchy eyes.
I'm particularly worried about her developing a permanent tic if we leave her on it too long. She has mild tics from time to time but nothing unmanageable, but this is different.
Her teacher has asked to talk to me tomorrow, most likely it will be about her throat clearing. 😬
If you don't mind me asking: What stimulant was she taking? How long was she on it? How recently did she stop taking it?
There's much more evidence that stimulants can cause tics (such as tardive dyskinesia).
• I've read that some side effects can take time to appear after a medication is started, and
Children can develop idiopathic tics at any time. What I just read said that most children's tics develop between ages 5 and 10 (and that for many children, the severity of their tics can increase between the ages of 10 and 12).
Any tics she has now, she might grow out of by the time she's an adult. However, there is always reason to be concerned that a new tic will become permanent.
[As a parent, I understand the concern that a child will have a concerning condition permanently. For my youngest daughter, it's her prevalence for respiratory illnesses developing into pneumonia. (It happened with every cold and flu from birth until she was 4 years old, and an average of once per winter since that age. Thankfully, three years ago COVID only gave her mild cold symptoms.)]
~~~
For any medication, there is the potential that an individual will respond exactly the opposite of how it's supposed to work. So, it's not inconceivable that your daughter developed the tics due to Guanfacine.
• (e.g. My ex-wife is allergic to the allergy medication which is the go-to choice by doctors because of how effective it is for most people. In the US, it's called Benadryl. It nearly killed her twice as a child, so even though I grew up with it in the house, while we were married I made sure it never crossed the threshold into our house...until our then-teenage son had severe hay fever from a day of work on a farm, and it was the only thing that reduced his symptoms.)
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Of course, as her parent, you're observing her the most closely and frequently. You are her first and most passionate advocate.
Guanfacine is considered so safe for tics, be prepared for your daughter's prescriber to push back. (If it's not working for her ADHD symptoms, then you would have a strong case to discontinue the medication just on those grounds.
She was on Methylphenidate for a couple of months, she didn't get any improvement in ADHD symptoms. They tried me on Methylphenidate and then Lisdexamfetamine. I reacted very badly to Methylphenidate so when the Lisdexamfetamine didn't work either they decided to switch to non stimulants for both of us.With Guanfacine neither of us notice any difference to our ADHD symptoms, although we both sleep better and it's reduced the blood pressure/heart rate for both of us. My heart rate is very high normally so this is great but hers is getting quite low now so we have to keep an eye on her for that.
I've had chronic migraines for over 30 years and in the migraine world it is very common that a migraine drug can make you worse instead of better, so I'm very familiar with the concept of drugs doing the opposite than you are prescribed for.
I figure we take her off, see if she normalises, if she doesn't and it looks like the tic is just part of who she is then we can go back on the meds for the other benefits they might bestow in the future. If she gets better we will be able to blame the drug most likely. Its not very scientific but its simple 🤷♂️.
I wish I knew why neither of us have notice any difference in focus, RSD and other ADHD symptoms, although I have been on so many different drugs in my life I'm accustomed to them taking a lot longer to work than people generally think. Usually its 3 months, or sometimes 6 months you have to give a drug before you decide its not going to work and 6 weeks to get through the side effects.
And then there is the correlation versus causation conundrum which must always be considered.
ADHD stimulants are fast acting, so within the first few days it should be easy to tell if they are working or not.
Non-stimulant meds for ADHD might take weeks to notice if they are working.
Of course, many people do not respond very much to the initial low dosage, so dosage of a particular medication is usually stepped up over time in order to find the most effective dosage. (This method of gradually increasing dosage is called 'titration'.)
ADHD medication trials can take months or years to find what works best.
Mamamichl mentioned the GeneSight test. It's a genetic test which can yield what type of ADHD medication that a person might respond best to. (It is done by a private lab. I haven't done this test, but some people have reported that it was helpful in figuring out a good medication more quickly.)
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I was first tried on various dosages of Adderall XR for several months. It only partially treated my symptoms, and when my dosage was increased to 20mg, it gave me tachycardia (elevated heart rate) as a side effect, but no better treatment for my symptoms than the 10mg dosage that I started at.
I asked my doctor to try non-stimulant Strattera (atomoxetine), and he put me on a generic. I think that I am particularly sensitive to it, because I experienced some positive effects the first day and was feeling the full effects by the fifth day. It is twice as effective for me as Adderall was, treats more symptoms and treats all my symptoms better.
• Instead of treating dopamine deficiency, Strattera is a selective norepinephrine reuptake inhibitor (SNRI).
I have the Predominantly Inattentive presentation of ADHD. I don't really have any Hyperactive-Impulsive traits except for mild fidgeting and minor impulsivity (mostly internal, experiencing random thoughts...but I don't often act on them).
In addition to ADHD traits, I also have traits of a comorbidity that isn't in the diagnostic manual but has been studied since the early 1980s. This other condition was known for a long time as Sluggish Cognitive Tempo (SCT), but was renamed in 2022 as Cognitive Disengagement Syndrome (CDS). The symptoms include: excessive mind-wandering/ daydreaming, getting lost in thoughts, mental fogginess, staring (without, zoning out, and a few not
• Research found CDS (still called SCT at the time of the studies) to respond well to atomoxetine, but not to respond well to methylphenidate.
I had all the symptoms listed for CDS, in addition to all the symptoms of Inattentive ADHD. The brain fog that I'd had all my life felt like a physical sensation, like I had cotton fluff wrapped around my brain. Adderall only relieved the brain fog in the frontal area of my brain. Atomoxetine relieved it everywhere in my brain.
•Prior to starting on ADHD medication, the only relief that I had from the brain fog was when I got an adrenaline rush (like from roller coaster rides, or from a scare causing the flight-or-flight response). At those times, my mind felt clear for a few minutes, then the fog rolled back in.
•• Norepinephrine that atomoxetine helps with is also called noradrenaline. It's related to adrenaline, and it's essential for attention and stress reactions.
Dr. Russell Barkley has made video presentations about CDS/SCT.
The Wikipedia article about Cognitive Disengagement Syndrome has easy to follow tables of ADHD and CDS symptoms.
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What about your own ADHD traits? What presentation of ADHD have you and your daughter been diagnosed with?
Do you experience any of the symptoms of CDS?
If methylphenidate and lisdexamfetamine didn't work for you, then maybe you should give atomoxetine a try (or the newer SNRI known as Qelbree, which is said to start working faster, works better for some people, and has less side effects).
Oooh lots of interesting stuff there. I looked up CDS and am to relieved to say it doesn't sound like anything my daughter has although she has the mainly inattentive ADHD, I have combined. The Methylphenidate made my daughter talk non-stop and didn't help anything. She has had tiny little tics in the past but they are largely not present and when they are there they are mild. We only know they are tics because I have so many friends and their children have tics so I recognise them.
Her teacher spoke to me today and said that she noticed Antonia was much 'slower' on Guanfacine, too slow. She said it took all day to get her to write one sentence and that she is hardly speaking. I was surprised because she isn't like that at home but she does have this tic. Either way I think we'll have to give up on Guanfacine, for her anyway, I'll stay on it.
I'll talk to the prescribing nurse about Qelbree and see if it is available in the UK. It worries me that both my daughter and I don't feel any different, focus wise, on any of these drugs. You know you finally find a community you identify with and then we seem to be the only ones not repsonding to any of the meds, makes you feel different again. 😕
My symptoms are - huge problem with working memory, I'm clever enough I just can't remember anything. Bad RSD. Inability to sleep, all my life. 5 chronic pain disorders, get over stimulated by most things social, social phobia while at the same time overly stimulated/enjoy/exhausted by it. Addiction to exercise.
My daughter has insomnia and headaches, RSD, very forgetful, tomboy, as was I, very uncomfortable with her own femininity, as was I. Both have the general messiness, overlooking details, make stupid mistakes while also being anperfectionist in most things we do. Obviously there are more symptoms but I can't remember right now 🙄
Couldn't imagine a medication that could help most of those things so was ambivalent about meds but wanted my daughter to have a chance growing up less messed up than me!
While medication might help RSD, I think that therapy is also needed to help with it. Cognitive Behavioral Therapy (CBT) is the type of therapy which is most often said to be helpful with ADHD, but it depends on the individual and their needs.
I've found CBT to be helpful, but I was going through therapy because of major distress within my marriage, leading up to the divorce. I've used the techniques that I learned then to help with anxiety when it becomes a problem. I experience some RSD, but I think that I experience it less than many ADHDers do.
Being tomboyish and not feeling feminine...well, I don't see anything wrong with that. I see that as personality related. (My ex-wife isn't particularly feminine, and neither is my mom. Our eldest daughter has been very tomboyish most of her life, with a feminine side to her that she hides away most of the time.)
• I do think I've read that there is a correlation between women or girls who have Autism Spectrum Disorder (ASD) and are tomboys, but I haven't seen any research on this.
• My ex and eldest daughter don't have any autistic traits...so I don't think the correlation of being a tomboy is that strong with autism. Like I said before, I think it's mainly an expression of individual personality.
Since stimulants didn't work for either of you, then perhaps a non-stimulant like Strattera (atomoxetine), Qelbree, or Wellbutrin (bupropion) will. The first two are SNRI medications (selective norepinephrine reuptake inhibitors). The latter is classed as an "atypical antidepressant", and is an NDRI (norepinephrine-dopamine reuptake inhibitor), so it acts on both of the neurotransmitters which are correlated with ADHD.
• A couple of years ago, I saw many mentions of people with ADHD being successfully treated with a combination of Wellbutrin and Guanfacine.
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You mentioned your insomnia issues. It might well be ADHD related, since hyperactive traits can include insomnia. As long as you're getting adequate rest to be able to function well each day, then that's what matters most with sleep.
I have known of people with ADHD who were able to sleep longer once they found an ADHD medication that worked well for them. But I also know of one particular person (a boy adopted by friends of mine) who has ADHD and autism and was born drug-addicted...and nothing has helped his insomnia. He's now about 16, and all his life I think he has barely slept more than 3-4 hours in a night.
Undoubtedly, sleep statistics and guidelines are based on neurotypical people.
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Just don't give up on your daughter or yourself. Most people with ADHD can experience symptom improvement with medication. It's just finding the right medication for them which is difficult.
I presume that you've both already been tested for other conditions which can appear like ADHD, such as hypothyroidism.
Sorry for the delayed reply, it's been a crazy week.I was in therapy for years, individual, group and for a time CBT. CBT was a disaster!
Because they couldn't figure out what wrong with me I was put in the Complex Cases Service which involved a team of therapists, psychiatrists and psychologists and some of the most distressed people in my city. That was 15 years ago now, I self referred by the end of Covid they said my needs were too complex and they couldn't help me. The Complex Cases Service no longer exists.
Tomboyism is considered an indicator of ADHD over here. Its not that we don't feel feminine, if anything we are acutely aware of our own femininty and can't deal with the attention that it might bring. Plus when I was young I found the company of boys more straightforward and they were doing all the fun stuff like football and playing with cars, I do love cars 😄.
My thyroid has been tested to oblivion! My insomnia has been blamed for giving me prediabeties, but I am sleeping better on Guanfacine at least. If I can stabilise on a dose and med we can half the cost and focus on my daughters needs. She's been off Guanfacine for 3 days and she's already ticing (ticking?) less.
My prescribing nurse seems to be off-grid, I've sent her 3 emails but haven't heard anything back. She works part-time and we have to wait for her to have a weekly meeting with the psychiatrist.
The little googling I've done suggests Qelbee is available here so hopefully we can give it a try.
Thank you so much for your thoughts and knowledge. Because the situation here with the NHS not being able to provide ADHD help we are even more alone than normal and I wouldn't be surprised if you knew more than some of the professionals we are talking too!
It's good that your daughters tics are decreasing. Since Qelbree is the same type of medication as Strattera (an SNRI), it's possible that it could also cause her to have tics.
I certainly don't understand medicine more than doctors and nurses do.In true ADHD fashion, I have a tendency to hyperfocus. Also, since having ADHD means I'm driven to follow my interests, and I've always been interested in collecting information, I've hyperfocused on collecting information on ADHD. So, I've just got a collection of very specific knowledge about ADHD. (I'm an ADHD nerd! 🤓)
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The Raising of RSDs Ugly Head
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