So heartbroken with our meds journey - CHADD's ADHD Pare...

CHADD's ADHD Parents Together

14,157 members4,490 posts

So heartbroken with our meds journey

willowadhd profile image

My daughter is now 12. We have been on every every med for adhd since first grade. Every single one had terrible side effects that did not dissipate with time. When we lowered the dosage the side effects went away but so did the effectiveness of the meds. She is in 7th grade and constantly sick from her meds. We don't know what to do. We have tried so much and nothing really has clicked for her.

My son is 7 and his meds works like a dream. Seeing how effective his meds are (how they do help him) I can see that when it works it really WORKS! He had little to no side effects and wants to take his meds because he see;s how it helps him (a miracle).

I don't know what to do anymore. I my daughter hates taking her meds and everyday is a challenge. And I understand her why would she want to take med that make her have ticks, and feel so tired....etc.

26 Replies

Willowadhd-

Welcome to the group.. so sorry you guys are struggling like this. What other interventions are you guys working on? Also have you tried a combination of drugs or just a single drug? Are you working with a child psychiatrist?

You really sound like you have done it all.

How bad are her behaviors? Could you just work on focus issues for a while and see if you could get that under control..Maybe take a break from everything else? Not everyones body reacts the same to medication..

I am not sure you could compare one kid to the other.

Best of luck.

Big hugs..

Thank you. We never did combo but she also takes rispond at night to 1- help her sleep

2- give her an appetite on the meds.

She is with a psychiatrist and interestingly enough my son is with a different neurologist.

Her psychiatrist believes in giving low dosage, seeing how they respond and then higher the dosage.

My sons neurologist has a completely different belief system. She gives a high dosage because she is of the opinions that say too little is what causes it to have bad response.

I don't know what to think or do.

Well here's what I know..if it's not working... it's not working... if you know what I mean. In the world of ADHD you have to try everything when they its not working.

Best of luck.

Ldydy24 profile image
Ldydy24 in reply to willowadhd

Hi there and welcome. I understand your frustration as it took me several years and lots of meds to find the right meds for my ADHD son. I was on a mission and didn’t give up when one med didn’t work. I also didn’t spend a lot of time on a med if they didn’t work and demanded to try something else. I also kept a spreadsheet to log every med tried along with the pros/cons because this was needed when I switched dr’s, We had to go through 3 psychiatrists along with the pedestrian so my point is don’t give up and move on if it’s not working. If your sons dr has a different approach and has helped your son have you consulted with her to see if she can help your daughter? Your daughter is at a delicate age so I would suggest changing dr’s if the one you are working with hasn’t been able to figure out the right meds. There are a lot of options out there (dr’s and meds) so it’s possibke all have not been exhausted. Try to think positive and keep trying for yuur daughter’s sake.

willowadhd profile image
willowadhd in reply to Ldydy24

you are so smart for keeping a log. I have everything in a huge disorganized mess (maybe I have add)

Hi there, I'm really sorry to hear about the side effects issues, I have a recommendation. I myself have Inattentive ADHD (Non Hyperactive subtype) and got diagnosed in my mid 20s. I started taking 10mg of stimulant medication 2x a day a few years ago, along with a helpful group of supplements in order to combat negative side effects that are common with most stimulants. The combination has tremendously helped me out in life and because of all this, I was able to graduate and get my Bachelor's Degree in Psychology, and am now in Grad school to become a MFT Psychologist in order to help people and families with this very condition. It's certainly a life changer, but with great power comes great responsibility. I would NEVER recommend anyone to take stimulant medication by itself without supplements. Most psychiatrist do not mention anything about supplements, which is something I really hope to help change in the future, because supplements by themselves, and with medication, are extremely helpful and beneficial. Lots of people with ADHD get great help from their stimulant medication but sadly the side effects force a lot of people to stop, similar to your situation, and unfortunately lots of people don't know that supplements can help fight off a lot of the common side effects from taking stimulant medication. Also after using stimulant medication continuously for a few months or so, the medication will start losing its effects. The reason for this is because of the depletion of specific neurotransmitters (Dopamine and Norepinephrine), and in consequence of boosting Dopamine frequently, Serotonin will go down as well. I had multiple side effects during the first few months I started taking stimulant medication but once I researched more about supplements that are helpful for ADHD and stimulant medication and started taking them along with my medication, those side effects subsided.

I take a variety of supplements now, but here are the one's I started out with that are of essential importance in my opinion.

1. COQ10: this supplement is to keep your heart safe, and not cause a rise in your heart rate or blood pressure, which is common with stimulant medication.

2. Magnesium Chelated: This supplement is great for digestion and helps the body in digesting and absorbing the medication. Chelated form is the most bioactive form of Magnesium.

3. Flaxseed oil or an organic fish oil: I take a flaxseed oil supplement because of the benefits of EPA and DHA, which from research I have done is great for people with ADHD and goes great with stimulant medication as well, it has a calming effect.

4. A good multivitamin with Antioxidants

5. A newer one for me that I would HIGHLY recommend is R-Alpha Lipoic Acid (RALA). Stimulant medication produces oxidation in the body, which is not good for you, so the body needs a strong source of antioxidants. RALA is known as one of the strongest antioxidants out there and makes my medication feel smoother and fresh. It also helps the brain utilize the neurotransmitter Acetylcholine, which is one of the multiple neurotransmitters we lack, especially Hyperactive and Combined types. Because of this, my moods do not drift dramatically, and I feel more at ease. I also drink matcha green tea for its immense antioxidant and Serotonin (from the high theanine levels) boosting properties.

6. A good amount of people feel really sad or irritable once the medication wears off. For this I would recommend the supplement N-Acetyl Tyrosine. This supplement works by helping the brain bring back up the levels of the neurotransmitters Dopamine and Norepinephrine, which are temporarily low after stimulant medication wears off, since most stimulant medications work primarily with those two neurotransmitters.

7. L-Tryptophan. It is in my opinion the best supplement to take to help the brain with Serotonin due to it being the direct precursor to Serotonin, unlike 5HTP and others mentioned. In my studies I have learned that Hyperactive and a good amount of Combined types, both lack levels of the neurotransmitter Serotonin. This supplement is great with helping the brain with Serotonin, which helps with mood and helps lower the hyperactivity of people with hyperactive and combined type ADHD.

theres a link on my profile page of a google doc I made of every supplement I take along with the ones I mentioned. It mentions what grocery stores and online stores (Amazon has all of these supplements a lot cheaper than markets like Sprouts and Whole Foods) sell these supplements, and some information about each of the supplements and how they help out people with ADHD, in case you're interested. Supplements have greatly helped me out, and have also done wonders for some families and individuals I've worked with. Hope this helps, and I hope your daughter gets the help she needs without side effects.

Wow this is gold. I have been on this journey for 7 years and never never heard of this. She can't swallow pills so I am going to search on line and research a bunch of your recommendations and see if I can get it in chewables. Probably those supplements would be great for me as well. Cuz I sure can't follow through on anything some days

That is great to hear. There are multiple gummy supplement alternatives to a good amount of the supplements I mentioned. A really good supplement I would recommend for follow up/recall and task focus is a neuromodulator called PS100.

Thank you for all of this wealth of knowledge that you are providing me with to explore for my 9 year old ADHD son. When his stimulant medication wears off he experiences what I call "emotional breakdowns" for the littlest of things. All of sudden he just gets really sad and feels that he is not being included if he happens to be at school or feels like a complete failure when he is in Taekwondo or gymnastics class. He was on Vyvanse started at 30 mg, then went up to 40 mg then up to 50 mg and ultimately I got to witness him having a full on out crying meltdown at school during Field Day all because he felt like he was not being included in the activities. Now he is on Adderall XR. He started at 20 mg of Adderall XR, then his medication was increased to 30 mg and added a booster at 1 pm of Adderall IR of 10 mg. I do give him a multivitamin (Smarty Pants Kids Complete and Fiber with Omega3 fish oil, fiber, Vitamin D3 and B12) in the mornings and on occasions I was give him 4 mg of Cyproheptadine to help increase his appetite (he was losing a lot of weight for a while which is alarming because he also has Gilbert's Syndrome and his GI Specialist was worried about his liver and causing him to go into a Jaundice state). On occasion he gets 3 mg of Melatonin to help him sleep during the school week if he is not out by 10:30 pm. But I will definitely be looking into all of this supplements that you recommend especially R-Alpha Lipoic Acid and N-Acetyl Tyrosine.

Thank you Eclecticentric77 your information is definitely golden and I will look into implementing these supplements to my son's diet.

You're very welcome. I'm glad to hear you'll be giving supplements a try. Those are some very unfortunate circumstances. Having him take N-Acetyl Tyrosine an hour before his medication wears off will greatly help ease the come down of the medication. I hope all turns out well

I pray so too!!

Would you recommend NOT taking any of these if you’re not medicating, or are all of them good for the ADHD child?

I recommend them regardless of whether a person is taking stimulant medication or not. The supplements are safe to take and a majority of them are even offered in gummy form for children. Since our bodies are all different, some supplements do not go well with some people, this is where the trial and error process helps out.

where would you find the gummy form

You would need to look around. I recommend Amazon.com, you should be able to fins many of them there

Have you ever thought about trying a cbd/thc cannabis tincture for your daughter? Depending on what state you’re in, medical marijuana can be prescribed to children. In California, they prescribed it for my son and it works very well. I do not medicate him all the time but when I do it’s cannabis. There are little to no side effects: drowsiness at times

Thanks for sharing what us working for you child.

I am curious how old your child is? Also what educational setting is your child attending(

Have u done the gene sight testing

what is that?

Have gene testing done . Get full blood panel to see if something else.

Momrocket profile image
Momrocket in reply to Init2winit

I don’t know anything about this testing. Our son is 15 with ADHD Combined type. He definitely has big focus issues. He also has Pyroluria and needs prescription vitamins to treat that, especially zinc and b6.

Even on prescription vitamins his focus is very poor. We both would like him to try medication. Our son is very sensitive and the side effects described here are scary!

How might GeneSight help us? We have done 23 and me—does this help us? What has been your experience with GeneSight?

Sorry to hear about all the terrible side effects your daughter has faced. Have you tried Vyvanse or Concerta? We have had great success with them for our son with little side effects. Hope this helps.

willowadhd profile image
willowadhd in reply to jdjhen

Oh thank you! Yes both right now she is on vyvanse 30 and its not enough we had reduced from 50 which was effective in school; but did not allow her to sleep. So again we don't know what to do. To make matters worse her neurologist is out on surgery recovery

Just curious if she is only on a stimulant medication. I know it might sound bad, but son takes a focus drug before bed and it is 24 hour and helps him to focus on his work, especially in school.

how does he sleep if he takes it before bed?

It helps him sleep, it is.not a medication that stimulates his body. It helps him focus. The medication is a cognitive funcationing medication.

It's Guanfacine.

It balances the Ritalin medication.

Let me know if you have any questions.

You may also like...