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New to parenting a child with ADHD and needing some advice and guidance

amber_onesti1 profile image

I just stumble across this blog and am so thankful for it! I recently took guardianship of my nephew and have never had any experience parenting a child with ADHD. My 2 children have zero disabilities. I am familiar with the disorder but not extremely knowledgeable. The last 9 weeks have been a Roller coaster of emotions partly because of the new living arrangements and because of his emotional disabilities, trauma and ADHD. I felt like therapy and light medication could help him control the impulses, and after talking to a psychologist and psychiatrist my believes were confirmed. Medication seemed like the right choice, so today I started my nephew on clonidine and am nervous with how groggy he was, but know some of he grogginess was to be expected. But, still have many questions:

Is the grogginess somethings that will wear off ? Has anybody's child had negative experiences with the medication? Does anybody feel like the medication has really helped?

I would greatly appreciate some feedback from parents who understand my fears andare experiencing medication and behaviors first hand and not just the Dr.'s.

Anywho, thanks in a advance for any advice given and thank you for creating this blog!

24 Replies

I feel you. I have 3 daughters. 25, will be 20 in November and 81/2 will be 9 in September. The first was very smart & quite, liked to read. In school all A and in Junior High & High School advanced classes Then went to college for 4 years and now teches Orchastra at 2 different elementary schools. My middle one was smart but liked to hang with friends instead of read & do homework. She got by with good grades. Took a few advanced classes. Now at college wants to do something in counseling people. Just finished 2ndyear of college. So proud of the young women they have became. Forgot to mention both older girls no issues at all good babies and no delays. Now the youngest has had issues since day one. She had delayed talkinging and many other things came later than normal. Finally after fighting for my daughter and waiting for 9 months to get her in to a Developmental Pediatrician (which I was told by old pediatrician I had to goto if I was worried, she wasn't concerned that my 3 year old was barely talking at all.) She was diagnosed with ADHD Combined, OCD, ODD Anxiety-Nos, Sensory issues and Nocturnal Enuresis. Finally I wasn't crazy somebody else saw what I saw. My problem is she for the most part is good in school and out with family & friends. No one sees her after everyone is gone a nd it is one the 2 if us and she lets go. It is the end of school and it has been pretty stressful on her. Her ODD really comes out when we get him and she had a bad day. Sorry to write a book. I understand what you are going through. I kinda want to try medication to see if it helps especially with her OCD it really stresses her out. My husband doesn't see her issues as what they are he just thinks I am a bad parent and she is the way she is because of me. He doesn't want to medicate her. I am torn. I hear a few parents say that their kids don't like the way they feel off the medicine and will tell them when it is time to take next dose. Sorry no help. Hope someone ca n give you insight on the drug. Good Luck and welcome.

Thank you for sharing your story. I feel that medication is a really important aid in this battle. My thoughts and beliefs are that you wouldn't prevent a diabetic from recieving insulin for their illness, so why keep mental disease from being treated? Medicine is here for a reason but because of negative association with mental disorders and meds we as a society have been made to feel like it's unnecessary to medicate, or that they will grow out of it. When in fact, it's the opposite and very unfair to leave untreated.

I wish you much luck and many blessings. Thank you for sharing your story and I hope and believe something beautiful will come in to play for your sweet baby girl.

The issue with that argument is that we know what causes diabetes and how insulin works to help it. We do not know what causes mental illnesses and we do not know how most drugs that we give actually work in treating them. The only way we can measure the neurotransmitter in the brain is by cutting it open. Since that would kill people science has created theories that they "think" explain something. Often these theories change over time in the research end while medications being used on the practitioner end does not change as rapidly. For example with depression the theory has always been low serotonin levels even though research never really and still doesn't support that theory. But it has been treated with antidepressants for decades based on that theory despite the fact that they do not work in 40-70% of the people who take them.

ADHD is a combination of symptoms that has no objective and clinical test to determine the cause. There is no blood test that can be done that determines if a person has ADHD or not. I believe that there are multiple things that can cause the symptoms of ADHD. For me it was a genetic mutation (MTHFR) that has been helped significantly by taking the correct supplements. For my son there is something else at play, not sure what yet but I have some theories. But the point being that is why different people are helped by different things. I truly believe that ADHD is caused by a multitude of factors and that the medical community needs to dig deeper into these varied causes in order to offer a range of treatment options. Unlike insulin, not all medications work the same for all people with ADHD.

As to you original question clonidine is a blood pressure medicine. My son is on a similar one Intuniv. The grogginess is normal and should get better in a few weeks. If not contact the doctor and have the dose reduced. It does help my son with his aggression and hyperness. I have not seen any negative side effects, except possibly some weight gain. he was on stimulant for a time and had awful side effects but I know other kids who take them without any issues. Each kid is different.

Finally, I want to commend you for taking care of your nephew. Good luck on your journey!

I see both ways; to medicate & not. My issue is my daughter was diagnosed with ADHD Combined, OCD, ODD Anxiety-Nos, Sensory issues and Nocturnal Enuresis. What do I treat? The doctor wants to do ADHD. I think her Anxiety, ODD & OCD are worse. The other problem you can't mix the drugs for different diagnosis because it causes worse things. That is my problem.

I totally get that. I feel like my son's ODD is way worse at school but they only want to talk about the ADHD. People tend to gravitate to what they know/understand best. That why I feel like I have to so so much of my own research and advocate, advocate, advocate! I hate feeling pushy and bossy towards other adults but I am starting to get use to it.

Great job for being your child's advocate and knowing what he needs even when other's disregard and focus in on one thing. You should be proud!

I feel you have some of the same issues at my daughters school. :( The school looks at me like I am some crazy person making things up, because no-one pays attention and sees what she does. They go in so they say and monitor her for 5 or 10 minutes and thing they know how she is.

That is a difficult situation, I'm so sorry you having that experience. What does your gut tell you to treat? I think the first disorder that pops in your mind should be the one you try to target with meds. Good luck to you, I know you've got this!

Thank you for all of your info. Day 2 seems to be much better. Less grogginess! However he did have an issue at school and the school took the privilege of his field trip away. He understands his behavior is the reason, but is extremely embarrassed and sad because he said he couldn't help it. Which is extremely likely since he has oppositional control disorder and an impulsive disorder. Ugh, I just want him to feel like he belongs and has some control. I know it'll take time but it hurts my heart to see his little spirit be crushed.

If the behavior problem is due to his disabilities and you have an IEP for him they should not be able to discriminate against him going on the field trip. Read up on the Americans with Disability Act and check out the Wright's Law website. Special Needs kids have rights.

Yes, he does have an IEP and I also just learned of this law this morning. Thank you! Tomorrow is the last day of school, but I am in the process of starting an email thread with all of the information documented so that next year we do not have these issues. The hardest part of the whole situation is that they used the trio as leverage to try to keep his behavior in line and then took it away in the last hour of school the day before the morning they were to leave, and made me tell him he wasn't able to attend. His little heart was broken and he felt so dissapointed. I feel like it made us regress a bit in the steps we have been making.

That just breaks my heart. I am so sorry. At least school is over for the year and you have the whole summer to put a game plan together. I am new to this community. I have been on here maybe a month or two but it has been so great to share advice and stories with everyone here and know that I am not alone.

So to share a story of mine: my son's teacher had sent pictures over the ClassDojo app of the class playing with bunnies one day close to Easter. I asked my son about it and showed him the pictures only to find out he did not know anything about it because he happened to be tin the Special Ed classroom at the time. He was so upset that he missed out on that and I truly felt it was done on purpose.

It is heartbreaking to watch a child be discriminated against. It is a hard journey and I wish you the best of luck and lots of love.

MaudQ profile image
MaudQ in reply to amber_onesti1

This is a long thread, but I just wanted to jump in about the field trip. I think it’s terrible that they took it away from him last minute. It sounds like you are doing a good job getting your ducks in a row to advocate for him at school next year. Do you have the time/resources to take him out for an end of school date? To celebrate getting through a rough year and just to give him some attention and time? The medication/therapy/school/behavior stuff can be such a whirlwind - but the time I have spent just loving on my kid has paid off so much. Good luck - you are doing a great job !

it makes me feel really angry that he lost the field trip. I would fight that with all my might. He is living in a new home and, while he is so lucky to have you, he has had a huge loss. He can make amends for what he did wrong- he should not get a free pass-, but should not lose anything else. gr... my heart breaks for you both.

I wish they would make exceptions if diagnosed and school knows. That is so sad. Sorry, that happened to him.

Klmamma profile image
Klmamma in reply to Dsmith05

Thank you. I get so fricking sick of the insulin remark. It drives me INSANE. Science is mostly educated guesses, everyone needs to remember that. Do what you think is best for your child, that's all you can do.

My husband was initially very resistant to medication. Having him come to all doctor's appointments, teacher meetings & induced in every correspondence really helped. A year later, my husband is the one of us more adamant that my son take his medication everyday. Once we found the right one, the changes have been substantial.

Thank you for your info! I'm eager to see if the love, medication, structure, and therapy can help him to feel like he has control over himself and his emotions as well as feeling like he belongs.

Sounds like you are already starting on the right track! How old is your nephew?

My son took something similar to clonidine called guanfacine - so I will related my experiences with that. It did make him a little groggy & helped him fall asleep. It definitely calmed his body, but it flattened his personality a bit too much without really helping his focus. Some people combine it with a stimulant with great results, and I wouldn't be surprised if we try that some day. We then tried Straterra, which made him very surly, and finally a stimulant, Metadate CD, which has been great for us. But each child is different, and it can be a trial & error. Clonidine can take @ 2 weeks to reach peak effectiveness and for some side effects to wear off.

Non-stimulants in general don't usually show as big of a benefit as the stimulants, however they can have milder side-effects - especially for people who can not handle stimulants.

As for learning about ADHD, here are some resources I found invaluable, especially in beginning:

- The school psychologist. If you nephew is in school, they can be a great ally for you.

- 'Smart But Scattered' by Peg Dawson, about identifying strengths & weaknesses in executive functioning, and using the strengths to compensate for the weaknesses

- 'All About ADHD' by Thomas Phelan, followed by anything by Russell Barkley.

- This video (It's a little dated, but the info is still solid):

It's a hard road, but thank you for getting on top of things & helping your nephew!

Thank you for letting me know your own personal experience, some additonal info and your kindness. My nephew is 8. I feel like the combination of love, structure, therapy, medication and guidance will help him tremendously. He tends to be very violent and explosive, but in the short time I've had him I can already see a difference in how he reacts. There are sometimes that I can tell he really is physically unable to stop his reactions which is why I feel the medication will help also.

Both of my grandsons and their mother before them were treated with medication for both ADHD and anxiety so you can treat both.

Clonidine was always a medication that my psychiatrist wanted to put the kids on to help them sleep at night. But they are also on Intuniv and I did not want them on two blood pressure type medications.

My daughter was on medication all through grade school and high school, has a master's degree and makes more money than I do. The medication helped her to pass school and does not seem to have affected her brain or learning as an adult. She still deals with anxiety but that's another story.

Good luck on finding the right medication for your nephew and thanks for giving him a stable home

Thank you so much for sharing your own personal experience. To hear of the accomplishments your daughter achieved are extremely encouraging. I know my sweet little nephew has it in him to do great things and I know he doesn't like feeling out of control, which is why I felt adding the medication in would be beneficial. I'm getting a lot of backlash from my family, but still stand strong in my belief that it will help him tremendously.

Hi Welcome, Yes drowsiness is common with alot of the ADHD medications. You can talk with the doctor that prescribed the medication about this. He may need to adjust his dosages or change to a different medication.

My 12 y.o. son has been on 4 different medications and all of them have made him sleepy. Some caused loss of appetite, aggressive behavior and moodiness. You will find the right mix of medications eventually. You are doing the right things by reaching out to other parents and seeking help for your nephew. There are several books out there to check into as well "ADHD 101 A Guidebook for Parents" by Greg M. Romaneck and Derek Harkema, are a few to start. ADDitude magazine is a great resource as are numerous other websites, such as this one. Also several parenting courses such as: Nurturing Heart, Strengthening Families, love and logic, parent management training, trust based relational interventions training etc.

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