wornoutmom

rages - by far the worst and scariest of the PANDAS symptoms (except for maybe anorexia) in my book. I actually call them terror attacks, because they seem a product of an extreme fight or flight reaction. I don't really know how you can parent this extreme loss of control. My ds sometimes behaved as though rats were eating him alive. I know we didn't always do the best job. We did a lot of trial and error and made a lot of mistakes over the years. Your post brings me back to the worst of it last year when this was happening for 2-3 hours at a time daily, sometimes twice a day. What it came down to for me is a no tolerance for hurting himself. I would physically get involved if he is banging his head or trying to pull out eyelashes, but other than that I tried to to just stay in the room with him and make sure no one got too badly hurt. Little brother is a pro by now so when he sees ds start to ramp up he just goes outside or to his room and locks the door. The hardest for me was when he was getting physical with me. He just wanted me to fix it, make it stop. Sometimes he would ask for something to break so we'd get something safe. sometimes he seemed to be having tic/chorea movements in his arms or legs and he would ask for me to hold him. A few times we called the police out to the house just to "shock" him back to reality (it worked, the cops were great). We did not punish him for the loss of control. We learned that holding him "accountable" in his moments of clarity didn't help, because he literally would lose his mind during these rages and feel awful afterwards. It felt like he was being punished enough already by the experience itself. I know the guilt you talk about. You are human and can't always respond the way you would like to. The couple things that helped us as this became an everyday pattern was "tag teaming" when possible. Whomever had the most emotional energy to deal with the rage at the time, me or dh, that person would. Also, I tried to remind myself that this was like vomitting, a symptom of a sickness he couldn't help and that made him miserable too. I knew that once he got to a point he could blow his nose and drink a glass of water he was on his way "back to earth". I have to say, like worrieddad, the rages did not go away until we started getting serious PANDAS treatment (for us that's Biaxin and IVIG). He has only had 3 rages in the last 5 months, and truly they weren't even that bad/long. We still have a lot of anxiety and depression but I'm hoping the rages are a past memory...

Aetna has not been good to us. THey are very specific in what they will cover IVIG for. Unless you have immune deficiency (we did not) it will be hard to get it covered imho. If you find something different let me know! We are on 3rd level appeal. You can go to their website and read up on the IVIG coverage - there's like 48 condidtions they cover for. We are thinking of switching over to UHC in January.

Jag - I'm pretty sure she said she contacted Dr K before she got the titer results, so his comment was about the virus causing the crippling depression, not the titer results. D- correct me if I'm wrong. dabel - Gosh I've been wondering how your son was doing! We continue to see the downturns with every little illness as well. The good news is the huge setbacks seem to run their course with the illness. 2 weeks ago with a virus my son went into a nearly catatonic state (well - not truly but you get the idea) with his depression. He is slowly working himself back up. My dh says its akin to recovering from a head injury. Yesterday was one of the more "normal" days he's had in a long time, despite being exposed to another nasty illness I seem to have. So as scary as this is, he may come back out of it once the bug is out of his system. I'll be pulling for him!! Hope someone here can answer your ASO/dnase questions. I think a few have also had those sky high ones that persist. PM/call me if you want to talk!

The IgMs have remained high for a year now. Her doc seems more concerned with the IgMs then the IgGs. I am waiting for results for bloodwork she just had done this week and see where we stand. When we saw Dr. T back in the spring he said he believes she has been dealing with this for a very long time. He refers to it as an acute mycoplasma infection. Can I ask what you have tried as far as eradicating it? 90 days Biaxin,30 days zith,and another 10 days zith(500mg). So my daughter text me today before she got home from college to say the docs office called her (now 18) and says her bloodwork is normal. So I call and tell them to read me her levels. IgG is 3.0 and IgMs are 2036. NORMAL??? So I say "Does it not say high on that lab sheet" to which he responds "yes it does" but the doc has written" Good" on her report. Then he tells me she has the antibodies that show at some point she had mono. No clue when that could have been. TGIF because I need a drink!!! We got the positive mono antibody thing too. Apparently upwards of 90% of the population carries the EBV virus, but it never gets to the infectious mono stuff with many. The thing I gathered from all this is that with multiple virus/bacteria in the system, the immune system is working overtime and cant fight either effectively enough.

oh hon. I'm glad the psych doc could help. I can only imagine how scary it is to still see this anxiety after you've pulled him out of school and seemingly eliminated the stressor.... I am going to be holding out all hope next week that this IVIG will bring some relief for him (and you!!).

Not sure where you are located, but there are some infusion centers that will actually come to your home. They'll sit with your son, monitor etc while he watches his own tv, plays his own video games etc. PM me if you want more specific info.

Joan: Our doc said treat mood change like a fever. 600 mg 3X a day for 48-72 hours. Basically what you would for menstrual cramps. We've done it twice now. It seems to help. I'd vote for increasing it.

You would think that Dr would be interested. After getting the PETscan and CamK results, I contacted the dr. I wanted their opinion on the IVIG, given the new information and their original stance that it wasn't PANDAS. I emailed. I called the office nearly every day for a month. I faxed the results to the office. This dr had told me when we left the initial consult that I could contact any time with follow up questions. After a month of trying to get some feedback on this new information, I was told I would have to schedule and pay for a $200 phone consultation. I was told that my new "non-expert" that ran the PETscan and was recommending IVIG was a very good neurologist, and he was now our primary treating physician, and he was just taking a different angle on this. I politely declined to pay the $200 and felt very very snubbed. Interestingly enough, I was contacted by this expert's office in June to provide data on our PANDAS son in preparation for the NIMH meeting. I provided it. Somehow my son has been put into their files as being a PANDAS kid. And yet, he was denied treatment by their office... This really saddens me. Although part of me wonders if doc X is embarrassed, or otherwise overwhelmed, or didn't actually get/understand the original msg. (since I know others have had problems with contacting Dr. X...does the staff just not convey information?) HUGS! No, Dr X got the message. The first inquiry I made resulted in a very timely request for me to fax the results, and then DrX would be happy to talk with me. But then none of the my further inquiries were returned. I can't speak to what the motivation was. The staff seemed frustrated for me. After a month of this, the office worker finally just got out of her chair and walked back to the doctor's office to interrupt and force DrX to give me some response. I know this Dr has helped a lot of children. Unfortunately, for reasons I don't understand, mine wasn't one of them.

my ds14 has said this before. For him it is a depersonalization thing. It happens when he is flaring for days or after a rage attack sometimes. Sometimes he'll say he needs time to "come back down to earth" or that he feels like he's in a movie.

You would think that Dr would be interested. After getting the PETscan and CamK results, I contacted the dr. I wanted their opinion on the IVIG, given the new information and their original stance that it wasn't PANDAS. I emailed. I called the office nearly every day for a month. I faxed the results to the office. This dr had told me when we left the initial consult that I could contact any time with follow up questions. After a month of trying to get some feedback on this new information, I was told I would have to schedule and pay for a $200 phone consultation. I was told that my new "non-expert" that ran the PETscan and was recommending IVIG was a very good neurologist, and he was now our primary treating physician, and he was just taking a different angle on this. I politely declined to pay the $200 and felt very very snubbed. Interestingly enough, I was contacted by this expert's office in June to provide data on our PANDAS son in preparation for the NIMH meeting. I provided it. Somehow my son has been put into their files as being a PANDAS kid. And yet, he was denied treatment by their office...

The IgMs have remained high for a year now. Her doc seems more concerned with the IgMs then the IgGs. I am waiting for results for bloodwork she just had done this week and see where we stand. When we saw Dr. T back in the spring he said he believes she has been dealing with this for a very long time. He refers to it as an acute mycoplasma infection. Can I ask what you have tried as far as eradicating it?

I've been really hesitant to jump into this discussion due to the tone. But I have been having a strong reaction since the thread started. One of these 4 qualified experts looked me in the face last February (after I spent 1000 to fly there with my son)and told me my son did not have PANDAS and not to waste my money having the Cunningham test done. I got "something is obviously going on, but it's not PANDAS". After years of dealing with this, I got the "it's likely bipolar" or "perhaps seizures" diagnosis. Over the years he has had EVERY symptom of PANDAS, and all of these were dismissed by this expert as seperate coincidences and "some kids with mental illness have their symptoms get worse when they get sick". I was told that PANDAS kids never have good days - only bad days and very bad days. I was referred back to an epilepsy expert in my home state. Flash forward a few months and my son gets a CamKinase score of 168 and a PETscan showing inflammation in the basil ganglia and thalumus. The non-"PANDAS qualified expert" who ordered the scan is surprised, but orders IVIG for my son. HE puts his neck out and treats my son. It's not perfect. I don't feel guided by him . But its something. My point being that even the "experts" are not infallible. They get it wrong sometimes too.

I'm right there with you. Our neuro said to start ds on Buspar, but then his nurse said not to because we wouldn't know if increased symptoms came from stress of school starting or the med. Same office - 2 different takes. I know sometimes you get to the point where you don't care "which" works, as long as something does...

tired mom -do you have positive IgMs or just IgGs that wont go away? Our doc doesn't know what to make of it. Not sure if its still active infection or just IgGs that tend to linger. What are your docs saying about it?

Joan: ds was on Risperdal when he had his ivig (which I think is similar to zyprexa), but had been on it for quite a while. I have been at that point of indecision many times. You desperately want something to help him, but it will muddy up the "what helped him" picture if you do 2 things at once. Have you talked to Dr B about it? I would maybe get his take on it.

Latest immune work up done just 4 weeks ago. Everything still looks fine. Only thing we caught is still positive for IGg Mycoplasma. Has been positive repeatedly since April. It makes no sense. Doing Vitamin D, omega 3, vitamin c, multivitamin. On 1000 mg of Biaxin since April. Had high dose IVIG in June. Dr is a little confounded. None of it makes sense. Not familiar with choloidal silver. How does that help?

OMG! I actually laughed at your post because my ds14 (soon to be 15) is SO similar. Part 4 year old, part adult. Once at a restaurant I told him to not order Coke due to the caffeine, and he looked at me and said "Mom, I'm almost 15, I think I can handle my own beverage!" So now whenever he is acting small and wants me to do something unnecessary for him I tell him "If you can handle your own beverage, you can handle this!". So anyway, ds did IVIG in June. What I told him was this "You have been through ###### and back over the last few years. I can't guarantee this will work. But if it does, even a little, it will be worth it. Do you think I would spend $12,000 on this if I didn't think it might help? You don't deserve to live this way and you may not have to if you try this." And then I offered him a kitten....Really - we talked about it for a few months and I told him it wasn't going to be easy or fun, and it might make things worse for a little while, but that I recognized that it would be hard on him, and that's why the kitten (he's a serious animal lover and had been wanting this for a long time). We got the kitten 4 days before IVIG so it was there for comfort when he was done. And I'm sure you can all appreciate this - he named his kitten "Baxter". We also got the free kids kit from Baxter ahead of time, and while it was WAY too young for him, it did give him a visual about what this was all about. He has definitely told people it was worth it and would do it again if he had to (which it is looking that way lately). Then again he might just be after another kitten....

Peg - sometimes I think the hardest part of this disorder is watching the "remission" fade away. Knowing what your child could be - was, and feeling like it's so damn unfair that it didn't last. Worrying that they won't get back there again. It's too hard to accept "this is the way it is.." when you know it has been/could be again better. And (I find) the grief at watching the downfall is wrenching..

Wow. Your post just made me cry. Thank you so much for sharing. What I got out of it is that it is possible for a teen to survive this kind of pain, and come out ok as an adult. An amazing adult. I needed this kind of hope today.

Well, I can honestly say that the worst sore throat I've had as an adult (felt like swallowing glass) I was told was not strep, but from nasal drainage. The one time I did have strep as an adult it made me REALLY sick. Kind of like the flu - very swollen throat, fever, chills, muscle pain,exhaustion. Except for the H1N1 last year, it's the sickest I've been as a grown up...

NOCALMOM- we had the same thing 7 weeks post IVIG this summer. No stress at all,just a "mystery illness". Once the illness passed (7-10 days), so did the PANDAS stuff. But in the following weeks is when we started to see the panic attacks in response to stressful situations. If you read my post from earlier this week, we had a serious downturn with the combo of 2 illness back to back and the stress of starting highschool. He is getting back on his feet within a matter of days (and some xanax...)My husband and I have remarked that we can't recall seeing him go down so far so fast and then rebounding back again so quickly. Almost like the sawtooth from He**. Is that a function of the IVIG he had? Or the xanax? Or this latest illness disapating? We don't know...Not sure if we ever will.... My point being not to panic (ha ha - like someone could have told me THAT a few days ago) but watch and see.

600 mg 3x a day. Celbrex? That's a new one by me!

norcalmom - thanks for the offer on the camkinase kit. I don't really feel like we need to do it again right now. We know somethings up. His number last april was 168. tpotter - insurance did not cover the first IVIG and we're not really in the position to pay for another one, but if things don't get better we may have little choice. We're in the "external review' request stage. Next is getting our HR involved and possibly the state insurance commission but that all takes time, and quite frankly, energy I don't have right now. mati's mom - he's getting 1800 mg motrin. we're waiting on the steroids for a few more days. Dr wants to do 30 day taper instead of burst. For some reason that scares me. He did the burst before and it caused quite a bit of diziness and headache. He does not want to be homeschooled. He just wants to be able to go to school! He met with the counselor today at the school and is supposed to try to go to 1 class tomorrow, but he's still freaked out about it.

Emerson - feel free to send him a private facebook message. I'm sure he could use a teen to talk to where he doesn't feel the need to cover it all up. I know he thought it was cool last time you guys chatted via FB. If you have time I'll try to get him on to FB tonight to check. Thanks kiddo! You rock!

thanks to all for the words of support. It really does help to cry with someone. He has turned away from me and is leaning on his dad, which is a first, but good - takes some of the pressure off of me and probably makes dad feel less helpless. He wouldn't go into the school with me to talk with his counselor, but was willing to go with dad. Dad is gonna see if he can get him to his therapist later today too. The school wants him to go back tomorrow but he is sick and I think its setting him up for failure. But the longer he's out the worse going back gets.. catch 22 Joan - I am so sorry to hear about your son. I have been wondering if the program you had him in this summer had helped. Have you tried getting him to write? It seems like a different function of the brain is being used and you could see the relief on ds after he finally got it all out. Can I ask - what did the school say about you taking him out? It feels like there's so much at stake now that it is high school.. I agree that the exposure is just too high. That's why we're trying for the half day. He said that was a 5 on his anxiety scale, and might be able to manage that. Iowa Dawn - numb...I get that feeling entirely...scared and feeling like you can't live this way much longer - i get that too. we're going for the Igenex test as soon as he is physically better. I am very interested to hear what your lyme doc has to say. Can you keep me posted? On an interesting note, I had a conversation this morning with his former therapist, who is an amazing OCD expert and running a hospital clinic in IL. He definitely thought he could help, but knows this has been going on for ds 8 years+ despite all our intervention, and started to talk about the new brain surgeries they have developed for intractable OCD. In one of them they actually go in and burn a small hole through the basil ganglia!! Scared the crap out of me, but he said he was just telling me this so I wouldn't lose hope that nothing else was left to try...