I am lost and hurt and don't need some serious advice please....

[Topaz1968]

My DS is 10 and was diagnosed with TS about 2 years ago, and then with PANDAS last summer. His tics were off and on, and were not a major problem, then he started to have intrusive thoughts last summer that really scared me. Come to find out his strep counts were off the charts. Before I found a PANDAS doctor, the Neurologist started him on Tenex. Once he started the antibiotic, things got better. I took him off the Tenex for a couple of reasons, but mostly, I was concerned about an allergy.

 

Things were going really well up until about a month ago. He just had this major meltdown, nothing I have seen before. He was really down on himself, very depressed and full of anxiety. I thought the PANDAS was the cause so he went back on the antibiotic and worked with the social worker at school. He has been working with her and she is great. However, he is really feeling the pressures of being in 4th grade - between his peers and the work load. He has a 504 plan, which helps, but he is still frustrated.

 

We are planning to meet with the school this month to talk about more strategies to help him.

 

He is now back on Tenex - just started last week, for his tics. His tics were pretty bad this past week over vacation. He is still on the antibiotic as well.

 

I knew that going back to school today after vacation would be a struggle, but he had the same kind of meltdown last night and a little bit this morning. He is extremely sensitive.

 

I am not sure what to do next - he talks about running away, he says that nobody understands him, little things really set him off. I know it is a combo of anxiety and OCD.

 

The Neuro told me that the Tenex is good for anxiety, but it seems to be having the opposite effect. However, I can't tell if the medication is causing this, or if it is just the Anxiety.

 

I thought about starting him on anxiety meds, but not sure.

 

He is the sweetest kid and it is killing me to see him so angry and sad.

 

Please help with some suggestions, I don't know where to turn now.

 

Thanks

[philamom]

Would the PANDAS doctor be willing to try a different antibiotic? I have found that many drugs used for anxiety to have the opposite effect with my daughter. You might want to post this on the PANDAS forum for more support. Hope you have better days soon!

[Ann280]

Would the PANDAS doctor be willing to try a different antibiotic? I have found that many drugs used for anxiety to have the opposite effect with my daughter. You might want to post this on the PANDAS forum for more support. Hope you have better days soon!

I totally feel for you. I agree maybe trying a different antibiotic. Have you tried a motrin protocol?or any natural supplements? Its so hard to send kids to school when these episodes happen I have struggled with that many times. Your not alone,hang in there !

[MomWithOCDSon]

I truly feel for you, too. And I suspect you're dead-on that it is the anxiety and OCD behind his sadness and anger. He's having all these thoughts and feelings, and he doesn't know how or have the skills to sort them all out.

 

I agree with the idea that you might try a different abx and see if his behaviors get a "positive kick" from the change; it is also possible, however, that you have the right abx, but because this is not his first (or maybe even second) exacerbation, it may take longer for the abx to quell the auto-immune imbalance going on in his body. We've experienced that in the case of our PANDAS DS14.

 

Are the rages and self-loathing occurring because you're trying to encourage him along to get him out the door to school, maybe? Is he pushing back because he feels pressured to move forward with his tasks (eating breakfast, brushing his teeth, getting dressed, packing up his backpack, etc.) in order to get to school at the appropriate time? Until recently, our DS was never the "raging" type, but as his anxiety increased in a recent exacerbation, he started fighting back -- not at the OCD or anxiety, but at us -- because we were insisting on him abiding by the standard time constraints and getting out the door in a reasonable time period, etc. By default, that meant he needed to cut back on some of his rituals or "thinking" in order to just get the normal, everyday things accomplished and get out the door. And he wasn't having any of it, even when we expanded his time window by getting him up earlier, setting timers to remind him that time was passing, etc.

 

Many people have recommended this book and it's techniques in the past, and I never really saw its applicability to us until recently; it's called "The Explosive Child," and it's been REALLY helpful to us. We've been able to use the techniques ("Plan B") to some success to help keep the rages to a dull roar.

 

And keeping the rages to a dull roar, in turn, has helped minimize the anxiety overall because he gets less worked up less often, so he's more successful at maintaining his emotional keel, so he feels better about himself, etc. Plus, there's some indication that stress alone can open up the BBB and allow more of those nasty antibodies to access the basal ganglia, so while I wouldn't necessarily advocate "peace at all costs," it's been really helpful to have some fresh tools at our disposal while we give the abx a chance to get at the root of the problem successfully.

 

Good luck to you! Hang in there!

[gators]

Just wanted to let you know that I had my son on Tenex for his tics in August and I noticed it made his anxiety WAY worse. He became very whiney as well. We ended up taking him off the tenex because it was not helping to tics anyways and his anxiety went away (at least back to the minimal normal level) I wish you all the best.

 

Leslie

[dcmom]

Topaz-

 

I feel for you, becaue I have a 10 yr old daughter who has struggled with ocd/anxiety and the resulting depression of pandas. I have a few thoughts...

 

I think it is SO hard on these kids when they are doing great, and then due to an autoimmune flare, they are overwhelmed with anxiety.

 

We have made the number one priority in our family- health (meaning mental and physical).

 

I think it is very important to figure out what is causing the anxiety, what is the ocd. My daughter had major ocd around something at school. She was out of control- panicked, oppositional, depressed, etc. When we took a step back, started an ongoing conversation about the ocd, and pulled back on her exposure to it- she TOTALLY relaxed. She stopped panicking, was able to be herself at home, and we have slowly worked on getting back to her life. We have done a combination of homebound instruction (plus an incrementally increasing day at school). It is NOT easy for me But it is so much better having my daughter happy and calm, and working on her ocd at a steady and manageable pace.

 

Maybe if you could figure out what the ocd is, and minimize it, but with a plan of working on it- he could calm down,

 

That being said, both of my girls have pandas, and antibiotics have not always been enough medical intervention- we did steroids and pex. So you may want to explore being a little more agressive medically, if things don't ease up.

 

I have really tried hard to make my number one priority for my girls (since pandas), happiness, finding joy in EVERY day. If that means some days they don't brush their hair, don't get dressed, dont get to school- that is okay. I try to look at the bigger picture.

 

It is not easy

[Topaz1968]

Wow, thanks everyone for your wonderful replies. I am just finding it so hard trying to find the right balance of everything. It just seems like things keep changing, and I can't pinpoint why - the meds, the environment, I just don't know.

 

Right now, his vocal tics are really bad. Luckily, they are barely noticeable unless you are close to him, but they have never been this bad or lasted this long. I am worried that it is the Tenex, but I still feel like I should give it a chance to work.

 

I have an appointment with Dr. B next month and will ask him about a different ABX. He has been on a steroid a couple of times to clear up his sinuses, but that seems to be under control right now. He is on Zyrtek for his allergies which are working great, but is that interfering with his tics? I wish I knew.

 

I think his anxiety stems from being overwhelmed. And yes, I do rush him a lot, because he has a big problem with his shoes in the morning, they have to be perfect. So, we have tried to get them on earlier so he has time to feel if they are OK. But, sometimes we just run out of time. His teacher is amazing, and I cannot stress that enough. I think that has helped immensely this year. The social worker is also great - another bonus. Also, my husband has been more involved, which in the past, he wasn't - he has a lot of his own problems. So, I was doing Everything myself. I still do most of it, but he is there more emotionally for my son, which I do think is good.

 

His OCD is mostly fears - thunderstorms, bees, werewolves, being alone -you name it. He also has some problems with material things - if they break or get ruined or something happens - he has a connection with material things that is definitely something OCD. He also gets stuck on things that bother him and can't let them go. Or gets stuck on a favorite thing - such as Star Wars, or Harry Potter - now it is Super Mario. He does everything related to it. They are not really bad, and sometimes they are not very noticeable, he can be fine. But, when they are bad - they are bad. He sleeps with me every night because of his fears, and I know that is not a good thing. I am trying to find a good psychiatrist to help out. But, don't really know any in the area.

 

Anyway, I hope the tics get better. Right now, his sadness seems to be at bay - not too bad.

 

Thanks again