Two years ago, my son was diagnosed with SPD, ADHD, OCD, Tick disorder, and anxiety. Since then we have been doing nerofeedback, OT, talk therapy, etc. We have also tried numerous medications such as Focalin, Aderal, Abilify...you name it, we've tried it. A few times, the meds seemed to have helped. At first Tenex worked but then stopped. A few of the meds made his tics really bad so we put him on Risperdal. That seemed to help. We put him on Zoloft for anxiety and at first the difference was night and day, but after a few months, that stopped working too. So right now, he's on Tenex, Risperdal and Zoloft. His doctor wants to start him on Lithium and I'm literally heartbroken about all the meds I'm making my baby take every day. He is 6 years old. His doctors are some of the best in the field and I trust them completely, but I have to hold back my tears when I kiss my baby good night. During the good times, he is the sweetest child you can imagine. During the bad times he is angry, mean, destructive, rude and hurtful. Most of the times, after a pretty bad episode, he doesn't even really remember what he did or said. He craves comfort and hugs and love, but sometimes his anger comes out stronger. I don't know what to do. Part of me wants to stop all the meds (with doctors approval) and start over. Part of me is scared of what may happen if we do.
I have tried essential oils, probiotics, DHA, etc. Nothing seems to help.
I'm not really sure if I have a question. Maybe just someone to tell me I'm doing the right thing.
Thanks.
To answer sunto3's question...
He was diagnosed by a pediatric neurologist. He underwent about 15 hours of testing.
Yes, he is my biological son and there was no trauma.
Yes, he was tested for PANS. Negative.
Treatment is an evolving process.
It's never just "There! We found something that works and we'll NEVER have to change it!".
What works this year might not work next year and might work again the year after that.
It's quite a balancing act but you've got to keep re-balancing as your son grows and develops.
My son went through a medley of meds. Nothing really worked. We were told about a doctor that was "a master with meds". Heard it from 3 people. He's the kind of doctor who gets the severe cases once they've given up on the doctors they've tried. Sure enough, he is a "master". The new medley works beautifully. It took a little time but he was very cautious and increased slowly over time. I think this is the type of doctor you need. I understand how you feel. You start giving meds to counteract symptoms of the other meds and you don't know if you're doing more harm than good. I get it. Not sure if you're involved with a support group but it's people like that who will lead you to a "master of meds". I wish you all the best-I know how hard it can be.
Is there a parent support group?
I think I would ask your treatment providers if they know of any parent support groups at least for the primary or secondary diagnosis.
If not, could they start one?
Sometimes connecting with others in similar circumstances opens up a wealth of knowledge or at least validate what you are feeling.
just thought I would throw it there.
Wish I had more :-).
sweetie, i totally feel you. that's a potent cocktail of meds, and a bewildering jungle of issues and diagnoses.
but you must must must not faff about with meds this potent without the complete understanding and oversight of your medical experts.
if the pediatric neurologist isn't making you feel confident, i'd certainly add a pediatric psychiatrist to your team.
you've got challenges and no mistake. i'd be right in your corner with wanting to stop all the meds and clear him out. that might even be the right answer. but you know- i know you do- that you need to keep working with your doctor(s) and not go rogue.
{{{{{}}}}}
khairete
S.
Honestly, I'd go with what the doctors advise, not a bunch of people on a general mom board. Our son has severe ADHD-combined type, OCD, ODD, depression, anxiety and ARFID. He also has periodic problems with tics and hair pulling. I completely understand the reluctance to use so many meds. It's the hardest part of it all ... questioning whether you're doing the very best for your child.
Our son has been on medication since he was four and he's about to turn 13. Here's what I've learned over the years:
1. The medical specialists know what they're doing. Trust them, unless they give you some reason not to. They have the training and expertise you need to give your child the best possible life. We second guessed our son's psychiatrist one too many times and she finally told us that if we weren't going to listen to her advice, to stop calling for help when things were bad. Our son's conditions are extreme and we need to stop treating them like they're not. Wake up call.
2. Meds always stop working at some point. Always. You can never feel confident your child is on the right track and all is well, because as soon as you feel great, the meds konk out. The problem is that kids grow quickly, so dosages have to be tweaked constantly. And some meds just don't work out. Meds can make a hugely positive difference, but they're no cure-all. It will always be a roller coaster ride.
3. We pulled our son off meds after a bad reaction to Vyvanse. BIG mistake! Let's just say we had him back on meds within days. If you have a child with an extreme medical condition or multiple ones, you need to treat it/them.
4. Don't turn to people with no medical degree or personal experience with conditions for advice. Again, see point #1.
5. Don't feel you have to justify your feelings or how you've provided treatment to your son.
Good luck to you! You're not alone.
If you trust his doctors continue working with them. Medications often work for awhile, then stop working. Also, what works for one child doesn't work for another. Finding a helpful combination is a matter of trying out different ones. As adults and children age their bodies change which requires different meds.
I know seeing your child angry is very difficult. Sounds like he's some better now than before he was on meds. I suggest you continue working with his doctor and other professionals.
My 12 yo grandson is on the autism spectrum and has several other diagnosis. Anger and violent behaviour has run through out his life. His medical team hadn't been able to find the right combination of meds. Then a year or so ago he acted out his depression by talking about suicide. He's been on a combination for a few months that has allowed him to feel more in control of himself and much less anger. He no longer acts out violently. There is hope for your son. Keep working with his doctors in trying to find the right combination of meds and treatments.
My grandson was seeing a social worker for counseling. I think that her talking with the pediatrician about her observations help her to eventually find a helpful combination. The SWH and the pediatrician who treated autistic children worked in the same office. Finding this combination of medical people took years. Each year, medicine learns more about the combination of medical and emotional issues. His mom kept talking with treatment people until she found this combination that helped.
ETA: Thanks for letting me know they checked for PANS. It sounds like you have great doctors. I wish I could offer you more help.
Has he ever been evaluated for PANS? Your description, especially the tics and OCD and his not remembering outbursts after they occur are all big flags for me about PANS (my sons both have this). Does your son get a lot of colds and viruses? Has he had Strep? Does he get much worse after he is sick? I am sure you have excellent doctors, but a lot of medical professionals do not know about this disorder and some do not believe it exists. My sons are both being treated by doctors (excellent!) at Stanford, so it isn't like this is some Dr. Google thing. You can PM me too if you would like. I am so sorry you are dealing with this. I have lived what you have described and I am very happy to say that with treatment, both of my sons are much, much better. (treatment included toncillectomy, steroids, and anti-inflammatory meds and a gluten free diet, so no drugs with difficult side effects for kids.) You can go here for more information.http://pandasnetwork.org/
He was diagnosed with all these things at 4 years old? It seems a little young to diagnose him with so many disorders and start putting him on so many medications. What do the doctors say about discontinuing? If he does, it will have to be done in stages and not cold-turkey.
I would talk to the doctors about long term side effects and weigh the good vs. the bad vs. the unknown. Also, don't be shy about getting a second opinion. Not that your doctor is bad, but because this is a rapidly changing field and another doctor may have other insights.
You might also want to have him tested for food allergies or keep a food journal and see if there is any correlation between the food he eats and his behavior.
i would continue taking the meds but take a closer look at his diet. something simple like cutting out dyes and high fructose corn syrup can have a major impact. other things like soy and dairy can cause one to feel icky and not know why thus acting out from frustration of feeling icky all the time.
my dh was angry 24-7, and sometimes had tummy troubles. we finally figured out that if his gut was not bothering him he was not angry. we then did an elimination diet and a food journal to find the food triggers that were causing the issues. Onion was the biggest issue. after cutting all onion out of the diet (and anything related to an onion or pepper) the anger issue has gone away and his gut issues are no longer a problem.
so when your looking at the diet. you may have to search for the unexpected ingredient. (my friends son can't have gleutin because it causes behavior issues)
How did your son get diagnosed (by what professional/s)?
Any traumatic experiences?
Is he your biological son or adopted (if adopted at what age)?
Well, if you trust them....
I don't know. I have disagreed with the psychiatrist before but kept giving the meds because I felt they were working at least a bit. Ritalin was a miracle drug for us. He started it at age 4, late in the year, he was almost 5. It was like night and day! We gave him half a pill before school. That was it.
Then when in Kindergarten he went to half a pill in the morning and half at lunch. He didn't even have to have an aid with him to corral him when he was in class. It was wonderful. He also was near the top of his class.
Then we moved. This school and this 1st grade teacher were horrible. We went up to a whole pill in the morning and half at lunch. He was acting out so badly that he would often have to come home by lunch time, wet, poopy, he was literally begging us to take him out of this class but he wasn't telling us there were problems. We just thought the meds weren't working.
We tried everything and once we decided to move him to another school the next year he was back to being great. His mom has him now and has taken him off all meds. I was sort of glad for her to see what she had done to him with her drug use while pregnant and I was glad to see him without any meds at all in him. I wondered, had been told by lots of parents, that one of the meds he was on had a side effect of aggressive behaviors. I was hoping that was what was causing some of his outbursts. It wasn't.
He got sent home day after day after day. He's doing okay now that his mom has him on a 24 hour ADHD med. Not nearly as well as the Ritalin but it works okay.
So if you want to see him off all meds please wait until Summer break. This way you will be the one home with him and as he weans off the meds starting in May you'll be the first one to notice changes. Then if you find he still needs some of the meds you can start him back up on them in August in preparation for the beginning of school next fall.
