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ADHD parents please help!!!! Guanfacine for ADHD
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amother




OP


Post  Sun, Sep 01 2019, 1:01 pm
Neurologist is recommending this medication for my son, age 5. I’m petrified to put him on meds but he has clear signs of ADHD and it’s becoming extremely difficult to manage. I did not like that the neurologist did not do any testing on my son though, he only asked me questions and then said yes it’s ADHD. He said the tests are expensive and he knows they will show he has it. I know the side affect is fatigue and I feel terrible doing that to my son. But would never give him a stimulant that suppresses his apatite for various reasons. Can someone please tell me more about their experience with guanfacine??
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amother




Salmon


Post  Sun, Sep 01 2019, 1:46 pm
I don't have experience with that particular drug, but you have to realize that there is no definitive test for ADHD (even with expensive testing). Ultimately you try a drug, and see if it yields results. It is not like having life altering surgery. The results are usually fairly quickly apparent. If you don t see positive results (or there are undesirable side effects) you can try another drug. There generally isn't much down side. I've seen the amazing result of stimulant drugs. It's a game changer. It is a real blessing that these drugs are available. Having to give a child ADHD medication can be a difficult step to take, but it can so positively impact a child's life and development It may take a little while to work out the kinks of the proper dosage, but it sounds like you're on the right track. Wishing you much success and nachas from your child.
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flower2




 
 
 


Post  Sun, Sep 01 2019, 1:46 pm
As far as I understand Guanfacine is not first line for kids for treating adhd. Are you seeing a psychiatrist?
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amother




OP


Post  Sun, Sep 01 2019, 2:11 pm
flower2 wrote:
As far as I understand Guanfacine is not first line for kids for treating adhd. Are you seeing a psychiatrist?


No, neurologist. He was tested by a psychologist who also said it’s probably ADHD.
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imasinger




 
 
 


Post  Sun, Sep 01 2019, 2:16 pm
I have 3 kids with ADHD. We have experience with guanfacine, as well as a whole lot of other meds -- and non pharmaceutical interventions, too -- diet, exercise, neurofeedback...

Personally, we found guanfacine didn't really do much. If you give the long acting dose (Intuniv) at night, there are minimal problems with drowsiness. But it also didn't help at all with focus, and didn't help much with inhibition control.

The gold standard of treatment for ADHD is stimulant meds. Not everyone suffers from the mild appetite suppressing effect. My kids often eat a big breakfast before it ramps up, and eat a big supper after it wears off. During the day, they are less hungry, but still usually find room for foods they really like.

That's the reason the next step after diagnosis is called medication TRIALS. You have to spend a little time trying alternative meds and dosages, until you find what works.

It is absolutely worth the time. Don't rule out stimulants because of the possibility of appetite suppression until you've tried them and seen if it's going to affect your DS.

Once you have something that works, you'll be amazed at the relief it brings to you, your family, and most of all, your DS. Feeling helpless in the face of impulsivity and attention problems is really painful.

Once you have that in place, please look into counseling, parent training, and the great literature out there on how to help a kid deal with executive functioning issues (checklists!)

Hatzlacha!


Last edited by imasinger on Sun, Sep 01 2019, 2:30 pm; edited 1 time in total
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amother




Green


Post  Sun, Sep 01 2019, 2:24 pm
My son is on 2mg Guanfacine in the evening and 1mg in the morning. Bh its really working well for him. There’s a huge difference in him since he takes it. We have tried many other medications and this one is bh good for him. I thank hashem for the medication every day!
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amother




OP


Post  Sun, Sep 01 2019, 2:41 pm
amother [ Green ] wrote:
My son is on 2mg Guanfacine in the evening and 1mg in the morning. Bh its really working well for him. There’s a huge difference in him since he takes it. We have tried many other medications and this one is bh good for him. I thank hashem for the medication every day!


So glad you found something that works! How old is your son? What age did you start it? Does it need to be taken whole? Side affects of fatigue during the day? Affect him at night!

Really appreciate your help, I’m so stressed.
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amother




Turquoise


Post  Sun, Sep 01 2019, 2:50 pm
imasinger wrote:

Personally, we found guanfacine didn't really do much. If you give the long acting dose (Intuniv) at night, there are minimal problems with drowsiness. But it also didn't help at all with focus, and didn't help much with inhibition control.

The gold standard of treatment for ADHD is stimulant meds. Not everyone suffers from the mild appetite suppressing effect. My kids often eat a big breakfast before it ramps up, and eat a big supper after it wears off. During the day, they are less hungry, but still usually find room for foods they really like.

That's the reason the next step after diagnosis is called medication TRIALS. You have to spend a little time trying alternative meds and dosages, until you find what works.

It is absolutely worth the time. Don't rule out stimulants because of the possibility of appetite suppression until you've tried them and seen if it's going to affect your DS.

Hatzlacha!


This ☝🏻

My DS was given guanfacine for impulsiveness. Didn’t do a thing for him. Stimulant is working very well. He has breakfast at home (at least I try to convince him to eat) and has big meal after school and before going to bed. No doctor has concerns about his weight.
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flower2




 
 
 


Post  Sun, Sep 01 2019, 3:45 pm
I meant do you have an appointment set up w a psychiatrist to manage adhd meds? Psychiatrist is prob the best choice (neurologist is better than general pediatrician but not best choice for adhd unless other neuro issues as well)
And stimulants are first line treatment, not guancifine.
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amother




Lemon


Post  Sun, Sep 01 2019, 3:53 pm
My son has been taking guanficine for at least 2 years (I forget exactly when he started taking it). It helps him with impulsiveness. We can tell when he forgets to take it. It has made a big difference in his life.
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amother




OP


Post  Sun, Sep 01 2019, 3:54 pm
amother [ Lemon ] wrote:
My son has been taking guanficine for at least 2 years (I forget exactly when he started taking it). It helps him with impulsiveness. We can tell when he forgets to take it. It has made a big difference in his life.


What age did he start? Any side affects? Fatigue? How did it affect him in school? And sleeping at night
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amother




Green


Post  Sun, Sep 01 2019, 4:08 pm
amother [ OP ] wrote:
So glad you found something that works! How old is your son? What age did you start it? Does it need to be taken whole? Side affects of fatigue during the day? Affect him at night!

Really appreciate your help, I’m so stressed.


My son is 14. He started on medication at age 6. We have tried many. He swallows pills from a very young age. His appetite is not the best. He is also taking periactin to help increase his appetite. Otherwise bh no side effects. A day that he misses his dose.... rather lets not discuss it. He is in therapy as well.

Having a child/children with ADHD is a huge challenge, getting them on the right medication is a challenge on its own. When you do get the medication right its a big bracha. Hatzlacha with your son. You can ask me any other questions you may have.
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amother




Aqua


Post  Sun, Sep 01 2019, 4:25 pm
My 12 year old is on 4 mg of intuniv for impulsivity and ODD. She doesn’t have typical ADHD, so she is being treated in a less typical way. She doesn’t haven issues with fatigue. My son who has ADHD inattentive type is on Vyvanse. They’re being treated by the same doctor but he is focusing on them individually. Why did your doctor recommend Intuniv?
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amother




Coral


Post  Sun, Sep 01 2019, 5:57 pm
My DD started on intuniv (at night) and then added a stimulant (daytime). When she takes both, she does much better.
She is almost 9 and has been on the intuniv for just over a year. The stimulants have changed and it’s only recently that we’ve found what seems to be the right dose/med for her.
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amother




OP


Post  Sun, Sep 01 2019, 6:48 pm
Green did you try other meds when he was younger?
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amother




Green


Post  Sun, Sep 01 2019, 9:22 pm
amother [ OP ] wrote:
Green did you try other meds when he was younger?


We tried a lot of different medications. Some had side effects. Two just didn’t do anything. We tried a patch and he got a very bad reaction from it
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amother




Olive


Post  Sun, Sep 01 2019, 9:46 pm
DS has been on guanfacine for 3 years. He started on 1 mg daily and it was helpful. He did have upset stomach in the beginning but adjusted to it fine. We went up to 4 mg as time passed. We finally added a stimulant and that's been the best so far. He still takes 1 mg guanfacine extended release in addition to 15 mg Ritalin.
This is helpful for his impulsivity but not helping his disorganization.
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amother




OP


Post  Sun, Sep 01 2019, 10:26 pm
amother [ Olive ] wrote:
DS has been on guanfacine for 3 years. He started on 1 mg daily and it was helpful. He did have upset stomach in the beginning but adjusted to it fine. We went up to 4 mg as time passed. We finally added a stimulant and that's been the best so far. He still takes 1 mg guanfacine extended release in addition to 15 mg Ritalin.
This is helpful for his impulsivity but not helping his disorganization.


How old was your son when you started and what changes did you see from it??
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amother




Scarlet


Post  Sun, Sep 01 2019, 10:34 pm
I also have a child on guanfecine, 2 mg ER at bedtime. It's been about 5 months, off in summer. We notice benefits to impulsivity and focus. We have tried so many other meds: a couple variations of Ritalin, Vyvanse, straterra, and more. For DC, guanfecine has the least side effects and most efficacy compared to the others. The fatigue and stomachache lasted the first few days of weaning up. We originally started at 1 mg at age 10.
Which meds kids respond to seems to be so individual and somewhat hard to predict. He has a bunch of first cousins with ADHD and they all did well on stimulants, unlike our experience where they either didn't work, worked for 3 weeks, or caused intolerable side effects that got worse over time rather than better.
One thing doctors told us is that in order to get insurance to pay for certain meds, the patient has to try the others first. 🙄 Which is upsetting bc it doesn't allow the doctor real freedom to use a medication they have a hunch will work first without wasting 6 months. I have heard this repeatedly from different psychiatrists, some version of "well I'd like to try X but first we have to try Y or insurance won't pay."
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imasinger




 
 
 


Post  Sun, Sep 01 2019, 10:58 pm
Guanfacine ER (Intuniv) is expensive, and maybe insurance companies would push back.

But the short acting form (tenex) is cheap. I'd bet even an insurance company that didn't like starting with Intuniv rather than Ritalin would be willing to agree to the short acting kind.

You just have to give it several times over the day.
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