how do we treat my son if he can't leave my house?

[tinaw]

Hi, I'm new here. My son is 15. He was diagnosed with PANDAS in May, but the doctors think he's had it since age 4. Antibiotics helped a bit over the summer, but are no longer helping. Steroids help but only while he's on them. We've tried numerous anti-anxiety meds and none of them help. I've conferenced with Dr. Kenneth Bock and Dr. Susan Schulman. They both feel that he needs IVIG and maybe a tonsillectomy.

 

But here's our dilemma - he cannot leave the house to get to the doctor's office. Nor can he handle having a visiting nurse come to the house. So we have no way of getting the necessary blood work done, never mind the tonsillectomy or IVIG!!!! His anxiety is so bad that he has not been in school since last March and cannot even handle being home schooled. He cannot leave our property, nor handle visitors. He relies heavily on video games because in his words they are the only thing that distracts his mind enough anymore. His anxiety is constant.

 

We've tried everything to get him into a doctors, and he wants to go but just can't. This is not about him not being willing. We tried Xanax and klonopin but they didn't help at all and possibly made things worse. I feel like I'm at the point where I'm willing to give him any kind of drug (legal, of course, and with a doctor's permission) to sedate him enough to get him in.

 

Has any else experienced this, and what did you do? If he were 7 I could pick him up and carry him in, but obviously at 15 we can't do that. Again, he wants to but he really and truly can't.

 

Any advice would be very appreciated.

 

 

 

 

 

[melmix]

I haven't has this particular issue but my son reacted badly to Xanax type meds. Clonidine relaxed him but made him very sleepy. I wonder if that might take the edge off. Good luck

[laure]

Hi,

So sorry you are going through this! We also went through a period like yours. It morphed over time - for awhile my daughter would only leave the house if she could walk in another pair of shoes and leave those behind when she got in the car. Then she wouldn't get out of the car unless we were at least 3 hours away. Luckily we saw a doctor in Denver at the time. She would never reveal what her exact fears were...just wouldn't do things. But if you can get to the bottom of it, maybe you can figure out a way to get around it. Once we realized she thought she was getting "contaminated" by the driveway and sidewalks, and all the people who used them, we figured out that she could be carried or wear another pair of shoes.

 

Another period it was the air that was contaminated - she had to hold her breath until she got in the car, and we had to leave the car windows shut until we were out of town lines before she was comfortable. And if she ran into anyone else from town once we got where we were going - disaster!

 

Having an out-of-town doctor helped a lot. We even had to drive over an hour to get blood work done although there was a wonderful hospital a mile away from home. How crazy it all seems looking back!

 

I know it is tough, but if there is a way to get around his fear no matter how crazy it seems, it is worth it to get treatment. After the first visit, we did a lot of phone consults. The doctors seemed used to this, and although not ideal, it was good at that time.

 

Hope this helps. I only look at this site occasionally now. Finally 100% healthy after a long battle. Stay strong!!!

[tj21]

I sent you a PM.

[tinaw]

Thanks everyone for your help.

 

Laure, I am happy to hear your daughter is doing better, it gives me hope.

 

I have an appointment for him tomorrow, which I'm sure he won't be able to go to, but hopefully the doctor can prescribe something else. I am going to bring your suggestions.

[rhyanen]

Wow! When I first read your post, I had to go back and read it again because I thought I had written it! We are in the same situation however my 16 year old son is now going to doctor appointments occasionally. But that's the only time he'll leave the house. He hasnt been to a store or in school for 1.5 years now. He would have been a junior this year if all had gone normal. But at 14, his freshman year, he had the worst flare to date, and it has incapacitated him.

 

He plays video games all the time too. It does help to distract him when going through flares.

[rhyanen]

Btw, I forgot to mention that one thing that helped us to get him to go to doctor appointments was to start playing the video games with him. He loves us being a part of HIS world. So I would give him plenty of preparation with appointments. I would remind him daily that his appointment was coming up, so he could allow himself to mentally prepare for it. I would also allow him to go to the car once the doctor was finished examining him. It provides a comfortable place for him to be alone and stress-free.

[philamom]

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Edited November 26, 2016 by philamom

[tinaw]

rhyanen, thanks for your response. I'm sorry for what you're going through. Thanks for your suggestions. It sounds like our boys are similar! Is he able to handle any home schooling?

[trintiybella]

Oh boy, can I relate. My daughter couldn't stop staring at computer. It's still bad but I can get her out of house now. I started to treat her, using Dr. Yaskos protocol. It's over Internet and email. So far she has been fabulous! Would you like to PM me?

[4Nikki]

We have also been though this with Dd's anxiety. I found that using a wheel chair is a tremendous help because she doesn't have to make the steps. I use a drowing sensation senerio to explain to people how she feels when the anxiety hits panic level. Some magic pills like benadryl are blockers for dd and symptoms come back more intense. If you know what the Cunningham panel numbers are? your pandas doc might be able to get something to help with binding to clear up the volume. Advil cold and sinus is ibuprofen with pseudoephed which was our magic pill for a while. Ashwaganda helps curb dd's anxiety level but we also give her mitochondrial support stuffs. Dd's anxiety gets so bad that she can go into panic mode and start to pummel her head to try and beat it out. I can barely hold her to stop her from ripping her hair out. When getting to the doctor is imperative, a wheel chair and some help has to be planned. If your child is anything like dear daughter, I also have the restraints. We have many aborted trips due to episodes along the way, delaying our hour or two in advance start to get her there. We have about a 60/40 success failure rate. When an episode happens in the doctors waiting room, the staff is more accommodating toward planning to get though a successful visit.

[tinaw]

Update: We finally got the bloodwork done on my son, but it was a long hard road that has left us exhausted and fearful.

 

We had tried Xanax in the spring but to no avail, but on the advice of a dr who's a friend, we tried again at higher doses. Finally, we found a dose that made him kind of loopy and took away some of the anxiety. We arranged for our dr friend to do the blood draw at home, got a script for lidocaine cream, had our dr friend come talk to him (which he tolerated but did not participate in), and generally prepared him as well as we could. The morning came - and he refused everything - would not take the xanax, refused the cream, and refused to do the bloodwork. He said he didn't care anymore and would rather live like this than try to get through treatment.

 

We spoke to our dr here and Dr. Schulman and both said time for psychiatric hospitalization. That the idea would be to drug him into submission (not really mincing words here, that's almost verbatim.). It sounds awful, but honestly, I was pretty close to agreeing, I could see no other way.

 

Luckily, a couple of hours later, he decided on his own to take the Xanax, and then under the influence my husband was able to talk him into the bloodwork. At this point we had to go to the lab because our friend was now at work, but he went. The nurse had to come out to the car to do it, though, as he couldn't get himself in the building.

 

So the good news is that after more than a month of trying, the blood work is done, but I feel no relief. It's only blood work, and he couldn't even get in the building even when drugged up on Xanax. How can we possibly get him in for a tonsillectomy or IVIG????

 

I suspect we are only postponing the inevitable, and that when we try to pursue the next step in treatment we will be back to facing hospitalization in order to get it done. For my son, that would mean EMTs coming to the house and forcibly removing him via ambulance. I can't even think about it, but also know we can't go on like this.

 

FYI for those who recommended other meds, we also tried clonidine to no avail. Benadryl helps a tiny bit but not enough to make a difference. But thank you for sharing your recommendations and stories as you never know.

 

4nikki, we can't get the cunningham panel done in NY, and I can't get him to a doctor out of the state to have it done.

 

How do you all cope with this? I am feeling so frustrated, discouraged and doubtful. It's been almost a year with no progress and I am worn out and losing hope. Dr. Schulman feels the tonsillectomy and IVIG would help him, but it seems so unattainable. I can't bear watching him in this much pain.

 

Thanks for all your input and advice.

[GraceUnderPressure]

I wish I had something to offer you other than sympathy. My 24yo son has tics triggered by compulsions (his neurologist called it OCD without the O). We've done IVIG twice (brought him back 50% the 1st time, but only lasted a week, then no effect with the 2nd) & various antibiotic treatments, but every time we find something effective, his tics start escalating & we have to back off.

 

We're currently looking into trying Stephen Buhner's herbal protocol and trying essential oils that others have had some success with.

 

Maybe you can try some of the at home treatments to see if you can bring him to a place where he can handle the dr's visits. Natural treatments tend to be slower and more subtle, but for some of our kids that's an advantage.

[Sirena]

I imagine you've already tried this but how about an iPad and headphones with games to go? Might help him cope. And maybe a massage therapist before leaving to help soothe and reduce the threshold for triggering full on fight or flight...just trying to think outside of the box.

[rhyanen]

Hi tinaw. I just wanted to check in with you to see how things are going. Are things any better yet? Have you found any solutions to getting your son out of the

home?

 

It's still a work in progress with my 16 year old. He still won't leave the house but has improved in other ways by reconnecting with his friends through online gaming. And his tics are gone. Anxiety still lingering enough to keep him homebound. But he did have a friend come over last weekend...first time in a year!

 

I know we're kind of in the same boat with our boys, so I just wanted to check with you. Hang in there!