Child with anxiety update

marchbaby

Thank you all for your advice a few weeks ago.  After reading all your posts I met with his therapist and spoke with his teacher.  Everyone had always been under the impression that he was improving, he would get better, a little worse, better etc.  But when I finally opened my eyes I figured out that HE wasn't improving, WE were.  Everyone in his life was trying so hard to avoid his triggers and keep him out of difficult situations that it sometimes looked like improvement but it wasn't.  I scheduled an appt with his pediatrician to get a referral to get tested.

Before we could get to that appt however (our pediatrician books out about 2 weeks in advance) a few things happened. He got hurt at hockey, he wasn't horribly hurt, but hurt enough to make him cry. He HATES to cry in front of others, combine that with having all the kids and parents watch it happen, it wasn't good.  The coach got him to the bench, and my son shut down. I had to walk across the ice to the box and stay with him the rest of the game b/c the coach didn't know what to do.  He refused to go back to hockey after that.  This was painful for us to watch b/c he LOVES hockey.  Two weeks later I told him he didnt' have to play but he did have to go to hockey b/c my older son was playing and we were all going to watch.  He totally shut down when I tried to put him in the car.  He was grunting, couldnt' talk, and shaking.  He kept unbuckling his seatbelt and getting out of the car (he has never done anything like this).  It was definately the worst we'd seen him.  My husband ended up staying home with him and I brought DS #1 to hockey.  When I got home I found out that after coming inside my husband tried to calm him down and then walked away to let him settle down.  He ended up leaving the house (which he never does) and my DH couldn't find him.  He finally found him around the corner at our neighbors house, just walking around, no shoes on etc.  This scared the hell out of us!

I called his pediatrician and begged for a sooner appt.  He agreed to come in early the next morning to see him. Basically he said that he is absolutely sure we aren't dealing with autism, he feels its totally anxiety, symptoms and family history can support an anxiety diagnosis.  He went over the four medication choices that we had and we selected one that my husband (who also has severe anxiety) has done well on.  We are starting him on a really low dose (5mg) and every 2 weeks if he has no severe side effects we will increase the dose 5mg, his target is 20mg, though if he is doing well on less obviously we will stick with less.  We started the medication that morning, and by that night we were noticing a difference! For the first time in a month he was downstairs playing hockey with my older son instead of isolating himself.  Four days later he played in his hockey game.  I brought him to a bday party and he did great (on a side note two of his friends moms came up to me and said their boys wanted to have an "olympic party" for a birthday, but they were worried my son would get upset b/c he hates to lose.  The boys had been trying to think of ways that they could make it easier for my son so he would have fun and not get upset.  They wanted my advice.  I am hopeful that by the time the party takes place it will go well, but aside from that so thankful he has such great friends who care about him so much!) He has been on the meds for 2 weeks now and has had no side effects.  He has not had any meltdowns in school since starting them, and the teacher said he is more flexible and smiling more.  He has been participating in things he wouldn't do all year at school. He asked to bring a share to school for the first time all year and even asked the teacher if it was okay since share had ended a few weeks ago.  He likes taking the medication b/c he says the meds make him run and read faster (I think in general it makes him feel better and he recognizes that), however he is on page 117 of a chapter book he started a few days ago so maybe he's onto something!  We increased the dose to 10 mg last night, so i'm interested to see how it goes.

Anyway, I want to thank all of you for your advice.  For the first time in so long I am hopeful!  Last month was really rough for him and me.  I cried every day, sad about what he was missing, about the struggle he was facing, and upset that I now had two people with anxiety to deal with, its not easy!  I haven't cried since he started the meds and am just amazed every day!  We are continuing the therapy and hopeful this is our answer.  If things don't continue to improve or get worse however, we will still follow up with testing.

CaptainSerious

I am so happy that things have improved so much and that you have a plan on place. IRS wonderful that he had so many people that care so much for him. What amazing friends!

My son has been diagnosed with general anxiety disorder, and we are considering our various therapy and medication possibilities. May I ask what med you chose?

marchbaby

CaptainSerious...he does have such amazing friends, we are all so lucky!   We chose Celexa b/c its one that has worked well for my husband and we decided to go with twice a day dosing instead of once a day dosing for similar reasons. 
Good luck with your son, anxiety can be so challenging!  I know we will continue to have some ups and downs but am so thankful we seem to be on the right path!

kcisthebombdotcom

I'm team auntie here. my pcp swore up and down my dd couldn't have autism. a neuro did a full eval--never mentioned the possibility of autism. a developmental pedi who is considered the area expert here wasn't even sure after spending three hours with her. I think you definitely need to move past a pcp at this point. FWIW i have an anxiety disorder and my child has autism. best wishes.

ToastieSimons

-auntie- said:

CaptainSerious said:

I am so happy that things have improved so much and that you have a plan on place. IRS wonderful that he had so many people that care so much for him. What amazing friends! My son has been diagnosed with general anxiety disorder, and we are considering our various therapy and medication possibilities. May I ask what med you chose?

Not the OP, but we also have a GAD dx at my house.

DS takes Paxil. He's done really well with it, but if I had a do-over I would have trialed something different first. DS started before the Black Box warnings and before SSRI Withdrawl Syndrome was on anyone's radar. Consequently, we inadvertently started DS on the SSRI with the highest association with adolescent and young adult suicide as well as the one that seems to be most difficult to wean from. At the time, the dev pedi picked it because only Paxil and Prozac were being routinely prescribed to children.

My parents take Prozac and I don't think it's doing much for them. Not sure if it's tanked on them; it seemed to help my dad pretty well initially, but I don't feel like it ever did much for my mother. They took it more for depression/PTSD after my sister died.

I took Lexapro for a recurrence of PTSD triggered by losing my house in a flood along with my MIL getting a terminal dx and DS getting his AS/ADHD dx. I was on a relatively low dose, but had a lot of side effects. The usual dead below the waist issues along with being really tired and cognitively impacted. I was sleeping about 12-14 hours a day. 

Its coincidental that you say Prozac isn't doing much for your parents.  DH is on it and he has really struggled on and off with depression this year despite still being on Prozac.  His PCP wouldnt consider switching his meds, said he needed to figure out a way to cope.  He has lost his sex drive entirely.  He is constantly sleeping and struggles to get motivated to do anything.  It worked well for the first 10-12 months but his depression has been slowly amping up over the last year. 

I was on Zoloft and felt awful on it, it felt like thinking through pudding.  I felt like everything was in slow motion, I couldn't think fast enough or talk fast enough, i was constantly tired.  and now I'm on Cymbalta (although I did get the weird side effect of yawning from it, it's died off with time but was odd)  because in addition to the anxiety piece for some reason it helps musculoskeletal pain (and migraine pain but I don't have them).  It also doesn't interact with Tramadol.  

CaptainSerious

Thanks, everyone for sharing your experiences with drugs.

My husband was once on Prozac, and as a result, is very nervous of medicating our son. In his cade, he thought everything was okay while he was on it, but when he stopped, he was amazed at how much clearer he was suddenly able to think. He says he feels like the drug "made him stupid" and when he stopped taking it, he was shocked at the things he could do/calculate, "overnight."

marchbaby

-auntie- said:

marchbaby said:

I'm glad he's doing better. It's sounds like you've been through hell.

I called his pediatrician and begged for a sooner appt.  He agreed to come in early the next morning to see him. Basically he said that he is absolutely sure we aren't dealing with autism, he feels its totally anxiety, symptoms and family history can support an anxiety diagnosis. 

If I had a dollar for every parent of a child with an Aspergers dx whose PCP assured them their child didn't have ASD I know, I could take a sweet vacation. A regular pediatrician is not qualified to make the call. A PCP who has not done an observation of that child in a social setting, or who hasn't had a full neuropsych eval done that included a range of scales like ADOS, GADS, GARS, ADI-R, Vineland and/or BASC-2 can't really offer an informed opinion,

We are prepared to set up  an evaluation if things don't continue to improve.  We really do trust our Pediatrician though and he has always been quick to test/refer for any medical issues my kids have had. Though I understand this isn't his area of expertise.

 He went over the four medication choices that we had and we selected one that my husband (who also has severe anxiety) has done well on.

This may be the case. But I know a lot of families where the parents presents with some sort of anxiety dx but the child has ASD. My cousin who has Aspergers is the son of a mother who has OCD, GAD and intermittent agoraphobia.  

I assume you were offered an SSRI. I'm really a fan of having these meds in the hands of a specialist- ideally a psychiatrist or perhaps a dev pedi. These are a powerful class of medications, with black box warnings and significant side effects- especially for younger patients. Aside from the risk of triggering bipolar, there exists the risk of activation/disinhibition in younger kids. Normally, SSRIs take a few weeks to have a therapeutic effect. If a person feels better faster than that, it could be a placebo effect or it could suggest they are going to require much lower dose than other people need.

Yes, he started on celexa.  When I started noticing improvements after one day I thought it was wishful thinking on my part.  I didnt' mention it to anyone and then my husband pointed out the improvement.  Then after a few days I asked my mom who had spent a few hours with him and his teacher...all good reports.  Also we used to have to wake him 5-6 times in the morning before school and now we only have to wake him once and he gets right up.  He has also been getting up earlier in general, he used to sleep until 9:30 ish on weekends and he's now getting up around 7:30 (which I consider a good thing!). I am thinking he is just going to need a lower dose.  My husband also only needed a low dose of Celexa (though he's also on other medications as well).  

 We are starting him on a really low dose (5mg) and every 2 weeks if he has no severe side effects we will increase the dose 5mg, his target is 20mg, though if he is doing well on less obviously we will stick with less. 

Why is there a target? All of the people we've worked with take a slow approach to finding an optimum level of medication for DS. DS has had psychoactive meds managed by 2 different dev pedis and a psychiatrist- none of them have ever suggested that he needs to get to a target- if he was showing improvement at 5 mg in less than 2 weeks, we would have held there until we see 5 mg fully "on board". Are you doing Paxil or Prozac?

I guess target dose wasn't the correct word.  The usual dose needed for full effect is 20mg.  We will continue to increase his dose slowly until we decide he's at a place we should keep him, or we reach 20mg...which ever comes first.He is on Celexa.

We started the medication that morning, and by that night we were noticing a difference! For the first time in a month he was downstairs playing hockey with my older son instead of isolating himself.  Four days later he played in his hockey game.  I brought him to a bday party and he did great (on a side note two of his friends moms came up to me and said their boys wanted to have an "olympic party" for a birthday, but they were worried my son would get upset b/c he hates to lose.  The boys had been trying to think of ways that they could make it easier for my son so he would have fun and not get upset.  They wanted my advice.  I am hopeful that by the time the party takes place it will go well, but aside from that so thankful he has such great friends who care about him so much!)

So other people have noticed this about your son? I wonder if there's something more than anxiety. Needing to "win" is sometimes seen in OCD and ASD.

He is a huge perfectionist which is one reason he hates to lose.  His classmates have seen it at school.  I would not be surprised if he did have a bit of OCD. I have it and he does like to keep his room neat and things in a certain order.  He doesn't seem to obsess over it though, and other areas (playroom) he doesn't seem to care when its a huge mess (which is almost always!)

 He has been on the meds for 2 weeks now and has had no side effects.  He has not had any meltdowns in school since starting them, and the teacher said he is more flexible and smiling more.  He has been participating in things he wouldn't do all year at school. He asked to bring a share to school for the first time all year and even asked the teacher if it was okay since share had ended a few weeks ago.  He likes taking the medication b/c he says the meds make him run and read faster (I think in general it makes him feel better and he recognizes that), however he is on page 117 of a chapter book he started a few days ago so maybe he's onto something!  We increased the dose to 10 mg last night, so i'm interested to see how it goes.

Good luck. It's sounds like he's responding really well to the amount he's taking now. What do you expect from an increase? Is there more he needs to "get" to be OK that he can't get with his talk therapy?
While we have noticed a difference with the smaller dose he is not where he needs to be yet.  He still seems anxious/nervous at times, and has the "eye tic" still, though not as bad as before.  I can usually tell when he's anxious, he holds his body differently, mostly I notice him holding his arms stiff and clenching his fists.  I have seen it less, but it does still happen (usually when walking into school, since school is a big source of anxiety for him). I suspect he will stay on a lower dose, but 5mg was a little too low to help him out completely.  We are continuing therapy as well.

Anyway, I want to thank all of you for your advice.  For the first time in so long I am hopeful!  Last month was really rough for him and me.  I cried every day, sad about what he was missing, about the struggle he was facing, and upset that I now had two people with anxiety to deal with, its not easy!  I haven't cried since he started the meds and am just amazed every day!  We are continuing the therapy and hopeful this is our answer.  If things don't continue to improve or get worse however, we will still follow up with testing.

Good luck. I hope this is the solution. I would want to know what's causing the behavior because there may be pieces to this still evolving. The thing is, if the meds tank (which they sometimes do) or if he becomes activated on a higher dose, you could be in a worse place than you were a few weeks ago and have to wait to see a professional for a full eval while in crisis mode.

Unforunately I know all too well about meds tanking   My husband has been on many, and combinations of many.  They will work for awhile and he does great, then one day he's back to square one. It took a long time for him to be able to recognize it so it was always on me to tell him he needs to call his doctor b/c his meds weren't working anymore, and they would change things up. 

marchbaby

ToastieSimons said:

-auntie- said:

CaptainSerious said:

I am so happy that things have improved so much and that you have a plan on place. IRS wonderful that he had so many people that care so much for him. What amazing friends! My son has been diagnosed with general anxiety disorder, and we are considering our various therapy and medication possibilities. May I ask what med you chose?

Not the OP, but we also have a GAD dx at my house.

DS takes Paxil. He's done really well with it, but if I had a do-over I would have trialed something different first. DS started before the Black Box warnings and before SSRI Withdrawl Syndrome was on anyone's radar. Consequently, we inadvertently started DS on the SSRI with the highest association with adolescent and young adult suicide as well as the one that seems to be most difficult to wean from. At the time, the dev pedi picked it because only Paxil and Prozac were being routinely prescribed to children.

My parents take Prozac and I don't think it's doing much for them. Not sure if it's tanked on them; it seemed to help my dad pretty well initially, but I don't feel like it ever did much for my mother. They took it more for depression/PTSD after my sister died.

I took Lexapro for a recurrence of PTSD triggered by losing my house in a flood along with my MIL getting a terminal dx and DS getting his AS/ADHD dx. I was on a relatively low dose, but had a lot of side effects. The usual dead below the waist issues along with being really tired and cognitively impacted. I was sleeping about 12-14 hours a day. 

Its coincidental that you say Prozac isn't doing much for your parents.  DH is on it and he has really struggled on and off with depression this year despite still being on Prozac.  His PCP wouldnt consider switching his meds, said he needed to figure out a way to cope.  He has lost his sex drive entirely.  He is constantly sleeping and struggles to get motivated to do anything.  It worked well for the first 10-12 months but his depression has been slowly amping up over the last year. 

I was on Zoloft and felt awful on it, it felt like thinking through pudding.  I felt like everything was in slow motion, I couldn't think fast enough or talk fast enough, i was constantly tired.  and now I'm on Cymbalta (although I did get the weird side effect of yawning from it, it's died off with time but was odd)  because in addition to the anxiety piece for some reason it helps musculoskeletal pain (and migraine pain but I don't have them).  It also doesn't interact with Tramadol.  

My husband has severe anxiety and depression.  At his worst he slept most of the day and had panic attacks every time he left the house.  He also suffered abuse as a child and I think when we had our kids a lot of that got stirred up.  We had to try a few therapists and doctors before we found ones that worked.  We also had to try several different medications and combinations of meds.  If your husbands doctor refuses to change his meds, i'd find a new doctor. 

I was on zoloft for OCD but stopped it b/c of the side effects.  I had no sex drive, weight gain and lost all emotions.  I wasn't happy, wasn't sad...ever.  You could have told me my dog got run over by a car and I would have just shrugged and not cared, it wasn't a good feeling.  I decided to stop the meds and learn some coping strategies on my own and can function.

marchbaby

CaptainSerious said:

Thanks, everyone for sharing your experiences with drugs. My husband was once on Prozac, and as a result, is very nervous of medicating our son. In his cade, he thought everything was okay while he was on it, but when he stopped, he was amazed at how much clearer he was suddenly able to think. He says he feels like the drug "made him stupid" and when he stopped taking it, he was shocked at the things he could do/calculate, "overnight."

My husband has also said his drugs make him stupid, and I will say he definitely isn't as sharp as he used to be, and oftentimes will forget things i've said, conversations we've had etc.  In our case he needs the meds badly and can't function without them.  He has also been seeing a therapist for 9 years, but needs the medication to function.
He has also said when he doesn't take him meds his mind races too much and he feels miserable (he also has ADD).  This was something he didnt notice until he started taking Ritalin.  He felt it was normal until he was medication for it.  He has said his worst fear was our son feeling like he did....like something is wrong with you, the constant anxious feeling, depression etc. 

I think its a balancing act and is different for everyone.  For me, I didn't like the feeling of being on meds (for OCD) and stopped them.  For my DH now that he has felt "normal" when he's on meds he doesn't like the feeling of being off them.  Overall its a hard decision, we debated for months before deciding to put our son on them and him getting worse fast was the only reason we knew 100% that it was the right thing to do.  Had he not gotten worse we would likely have continue to waver.