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tinaw

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

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Hi rhyanen, thanks for checking in.

 

The blood work showed that his strep titers are still high. He also had positive IgMs for Rocky Mountain Spotted Fever and brucella. The doctors don't agree on whether or not he actually has those, or if they are false positives. However, he is on three new abx, which would treat all three infections if in fact he has all three. He is on more supplements than I can count and is now gluten and dairy free and low sugar, which is incredibly hard as he was already a picky eater.

 

We have been able to get him to the doctors office twice, with large amounts of Xanax, but it is still torture for him, he barely made it both times and only did because he's incredibly strong willed, but it hurts to watch the terror and tears in his eyes. Refused bloodwork again, so we're going to try again in two weeks.

 

He is not getting any better and I feel is continuing his long, slow, slide. Anger, which started showing up two months ago, is increasing - a symptom, or a natural reaction to the fact that his life sucks right now? He spends all of his waking time playing video games, because in his words it's the only thing that distracts him enough anymore. If he tries other things he used to like - reading, board games, Legos - he says his mind wanders. He won't be specific, but says it wanders to "bad places".

 

Tonsillectomy and IVIG are still on the table, but not realistic right now. We've been told that a psychiatric hospital won't provide medical treatment and a medical hospital won't take him because he can't willingly cooperate. Even though IVIG could possibly be done at home he says he knows he can't handle the idea of having something inside his arm all that time.

 

The only thing that has ever really helped, I think, is anti-inflammatories. Augmentin/Azithromycin helped for a while but that may have been the anti-inflammatory property. Steroid burst helped but was temporary. He takes ibuprofen and curcumin all the time, but it's obviously not enough. I might beg for another steroid burst again just for some temporary relief, if nothing else.

 

We are feeling lost. It's been a year since symptoms started, and more than 7 months since treatment started, and though there have been some temporary gains he continues to decline. We are trying to stay hopeful but somedays it's hard.

 

I hope that you are having better luck with your son. I look forward to when I can come back on here and tell other parents to hang on, that it does get better. I just hope and pray that day actually comes.

 

Thanks again for checking in

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rhyanen, I've been reading your older posts..your son sounds like mine. He's 17 and won't leave his room, OCD and anxiety are so high. We're using antibiotics and ibuprofen. We tried Zoloft, made him aggressive and aggitated. We tried IVIG and IV steroids, didn't hold. Now I just want to get him out of the room to go for blood work. How did you finally make progress?

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TIna,

I am so sorry, I know many of us have been in this exact situation. A crazy catch 22: you can't get them to go to the hospital for much-needed medical treatment and the psych wards won't provide that sort of treatment. Your entire tale of video game addiction and refusal of doctor apptmts/blood draws was exactly where we were in February of this past year. I posted on this forum what all we did on a more general basis (gist was 6 months worth of High Dose Solumedrol infusions (every 4 weeks) plus ABX plus Naproxen plus Plaquenil). I tried to attach that summary with the link below. But meantime, I wanted to mention that in terms of getting him to go to his first Solumedrol infusion, we too couldn't get DS to go. We also tried Lorazepam which wasn't enough. We were finally told by our team of doctors to call 911 and ask for a "wellness check" which means they will send out police officers who are trained in dealing with a health situation like this. It was the worst day of our lives watching this happen. The two officers also couldn't talk him into going. However, with them present, after about a half hour of trying to talk him into it, I think he became just as scared of them as he was of going to the hospital, and he let my husband pick him up and put him in the car. I stayed in the back seat in case he tried to get out (thankfully he didn't). The police followed us to the hospital. We then used a wheelchair and lots of iPad/distractions/candy and more lorazepam. We also got the drs to use this spray that freezes the area for the IV, which is better than the cream. it was touch and go (he tried to leave via the hospital bathroom window), but we finally wore him down. I know this sounds absolutely awful, but we could see the HD Solumedrol working within days/the first week. It was a long haul, but by the second infusion he was already better enough that we could get him to the hospital without major issues.

Best of luck to you. It is beyond description to be in this situation. Hope you find relief soon.

 

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Hi all, tintaw, DD has had big improvements with mitochondrial support. Her rage level is down to extreme crying. When her anxiety level was so high she couldn't get out of the house easily the doctor did Skype visits. If benadryl works without having increased symptoms after it wears off, based on the pandas doctor's comments, the numbers in the Cunningham panel will be different than our daughters. Hers had three of the five really out if range and dd's pandas doc said her reactions to benadryl and pseudoephedrine made perfect sense.

The ER doc suggested using 50mg rather than just 25mg for a bigger effect. For DD it worked but hers symptoms were over the top when it wore off 4 to 5 hours later. In DD's case pseudoephedrine helped with binding to clear up her log jam in her basal ganglia.

The Cunningham panel cost near $1250 when we did it through children's hospital. If it wasn't covered, I would have saved up for $925 it costs if we had to do it ourselves. It wouldn't matter what state you are in. The lab has a kit you order and you can have a phlebotomy service at home. Some labs advertise home services.  The doctor can also order home service which is better to have the cost covered. When DD couldn't get out of the house, we talked to a lab technician that was willing to take the samples for us at home for $60. 

http://www.moleculeralabs.com/order-cunningham-panel-tests/

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On 10/10/2017 at 7:58 AM, pepper1 said:

rhyanen, I've been reading your older posts..your son sounds like mine. He's 17 and won't leave his room, OCD and anxiety are so high. We're using antibiotics and ibuprofen. We tried Zoloft, made him aggressive and aggitated. We tried IVIG and IV steroids, didn't hold. Now I just want to get him out of the room to go for blood work. How did you finally make progress?

Hi pepper1,

My son is now 17 and he still rarely leaves the house. He made some improvement for a while and went out a couple times to his friends house but that was about the extent of it. He will go to the occasional doctor appointment, but other than that he doesn't leave. He hasn't been to a store, School, or other facility in four years. He is just going to have to get his GED through the local College because the school district has washed their hands of him.

Over the past few months he was having nosebleeds quite a lot.... meaning a couple times a week at least. At first I didn't think much of it but then he started complaining that his anxiety was getting worse and he wanted to go on anxiety medicine. This coming from him and actually communicating to me was a really big deal so I listened.  I consulted his pediatrician who put him on a very low dose of Zoloft...25 mg. It has been two weeks that he has been on the Zoloft and it hasn't helped much. Yesterday he came out of his room and told me that he wants to go on the PANDAS medicine. I asked him if he meant the antibiotics and ibuprofen and he nodded yes. I finally realized that the nosebleeds could be related to a possible strep infection in his sinuses and that a flare-up is starting. It is also possible that because my husband and I have been sick with something viral he may be reacting to it.

At any rate I am calling his pediatrician in the morning to see if we can do some kind of strep swab and then get him back on antibiotics. I have noticed that the antibiotics with ibuprofen usually seem to help with his flare-ups but it doesn't completely eradicate all his symptoms. If only IVIG were affordable for us we would be doing that in a heartbeat.

 

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On ‎11‎/‎19‎/‎2017 at 10:10 AM, rhyanen said:

a very low dose of Zoloft...25 mg

Some would call that low, but it's not necessarily low enough for PANDAS patients.  Dr. Tanya Murphy found that more than 1/3 of 38 pandas patients reacted badly to that kind of dose, and only improved when starting at about 1/10th that dose. Here is her paper:

https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype

We followed that advice and convinced our prescribing pediatrican to start at 2.5mg zoloft, and we had a dramatic improvement right away at that level (the pediatrician actually didn't believe it, because it was a sub-therapeutic dose, but the Dr. Murphy reports the same - improvement for some at really low levels, and sometimes really bad reactions at "normal low" levels)

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