tpotter

Trying to PM you. You're apparently full. I'll send you my number if you contact me.

Please, please talk to someone. I'm going to PM my telephone number to you. Getting on the right abx will definitely make a difference. My DS was suicidal before we found out that it was PANDAS/Lyme. The first time, he lost a volunteer position he absolutely loved, because of the OCD (we didn't know that's what it was), and I managed to talk him home by train...he was wanting to jump in front of a train or into traffic. We put him in a hospital, and it was horrendous. Psych meds did nothing for him, and even at times made him worse. Then we found out about PANDAS, because of Dr. K, and because my younger son had classic symptoms. As horrible a time as we have been having getting treatment for the PANDAS this year, the first time he we put him on abx 2 years ago, and then again a 2nd time (both times instantaneously ragey and suicidal), was a miracle...he got better literally within hours! He continues to have other problems (like the joint pain, brain fog, and occasion minor rage, and other symptoms,) but has not had any more thoughts of suicide, and that is a beautiful thing. Now, we find out that everyone in my family has Lyme...yes...DH, 2 DS's, and myself. At first I was devastated, and all I could think about was "why can't it be easier." But, the reality is that it is easier, because now we know, and now we are all being treated. Abx are not expensive. We are all on abx and probiotics. I know your doc put your child on a lot of other things, too, but at least start with abx. I don't know what constellation therapy is all about, so I can't speak to that. Please get on abx immediately. Please, please Call me at any time if you need to talk.

Barb, I'm also going to email you. Ditto for the PANDAS. And, please do followup on the doctors we are recommending, because waiting for a neurologist who doesn't understand "PANDAS" will lead you down the same dead end road many of us have travelled.

Here's another reason to do the Cunningham test...especially if you are going to see Dr. L. Dr. L. does a very extensive amount of "rule out" when diagnosing (unlike the dr that I suspect you used to diagnose it the first time...over the phone, without ever seeing your child...and then can't be reached.) Dr. L. definitely uses the Cunningham results to help her "rule out", even though they are still experimental, parts have great merit, and they do mean something to her. Furthermore, if you have a problem with the cost of the Cunningham test, talk to Dr. C. about it (I can't stress that enough.) Good luck.

We have found incredible results with peanuts/peanut butter. It took me several years to find out that they are full of tryptophan (precursor to seratonin, which is what 5 HTP is all about.) But, the even better thing about peanuts is that they are also very full of fat, which takes it straight to the brain (my theory). All I know is that it works on my son within 1 -3 minutes, and he is typically back to normal within 5 minutes. Incidentally, after PEX last year, he had an episode that was just as violent, but did not appear to be the same. Afterwards, he said that it wasn't the same, and that he had more control. The peanuts did NOT work on that episode. Now...of course that also involves getting him to eat the stuff when in a full blown rage, because they do happen so quickly (I frequently found that the rage attacks would have tiny lulls, and I would force him...I would threaten to take away something important.) I know that it isn't a placebo with my son, because he HATES peanuts, and it is also the ONLY thing that I have truly found to work. We even managed to get him to go to his room several times without the peanuts...to save everyone and everything, and even after 2 hours, his rages were not calmed down. Then we would finally force him to take the peanuts, and voila...he was better, and literally back to normal...laughing, etc. Now that he is older (he'll be 15 tomorrow), he is able to tell us that he's getting ready to have an adrenaline rush, which we always suspected, because when in full blown rage, he was insanely strong (he would pick up both my husband and myself with his legs simultaneously.) He would not remember anything afterwards that had happened (we suspected seizures, and after eeg testing, we did find seizure activity in the fronto-temporal lobes (we repeated the testing 7 times over several years, and it was always the same...but the rages did not occur at the same time.) But, he is now on anticonvulscents, and they have made the rages easier to recognize...instead of being and instantaneous change in behavior, we would actually have about a 1/2 minute warning, which meant we could get the peanuts and/or he can now be cued to run to his room. But, yes...peanuts/peanut butter...1 - 2 T straight. It works better than 5-HTP pills. When having multiple rages in a day, I give him "preventative" peanuts...I give them a lot during the day. Otherwise, I just give them to him when he is about to have an attack. If anyone tries the peanuts, and it works, please let me know. I am trying to gather other people's experience with this.

I sent you a PM yesterday. Good luck.

I went to my OT reunion a few weeks ago, and one of my former classmates has gotten a grant for an eating disorders clinic at a major university hospital. I mentioned that strep and other infections can cause eating disorders, and she didn't know this. I passed on information about it to her. I really think we just need to pass on the information whenever we see there's a need. That's how it will get known, and even if we save one or two kids as a result from years of inappropriate or no treatment, we've done well.

Nevergiveup...I LOVE your response. And I totally agree. So far, we have found chronic strep, Immune Deficiency, MycoP, Lyme (clinically diagnosed in both my boys...their tests were not 100% conclusive, but they are definitely herxing). One of my boys has the joint pain and some (certainly very significant) neuropsych issues, while the other has almost only neuropsych issues...little to no joint pain. We are going through with IVIG, because my gut feeling is that we need to throw everything we possibly can or we will just keep going in circles. But, as nevergiveup says...we know our kids better than anyone else, and in the end we all need to make our own decisions using the bits and pieces of information each of us gleans from everyone else's posts. Thank you to everyone who has put his/her 2 cents worth in, because this is how this terrible disorder(s) are going to be figured out in the end. We all share ideas, get our doctor's recommendations, and add in our own "gut feelings" or "mother's intuition"...whatever you want to call it, and our children will hopefully all be helped in the end.

Absolutely. When he's really sick, turning on the light in the morning has thrown him into a fullblown rage.

My kids are getting ready to get IVIG (hopefully...finally...I'll believe it after it has finally happened.) Anyway, they are being treated for Lyme...definitely are herxing. Because one of them got the terrible headache last time, I was told to give them steroids starting 2 days before IVIG, and then going to 1 day after. My other DS has never had IVIG, but, like his brother, had PEX. I know we shouldn't be giving steroids with Lyme, but what about when IVIG is added in. Does anyone have any experience with this...and is this opinion or fact? Thanks. We've been through so much the past few years and even just over the past year with treatments falling through, finding out that it's Lyme we're dealing with (one of my guys was diagnosed by trying the doxy, and he's definitely herxing,) and I certainly want to cause the least problems possible. Thanks.

One of my kids just threw up, and now says he feels fine. The other one is having constant upset stomach (worse since starting the doxy), but is also herxing out the wazoo (and he is the one who was least positive in the family for Lyme...only 1 IgG band...#41, but he's herxing the most.) BTW, our LLMD specifically said to take doxy with food (which they both do, but still are having stomach problems.) He said that the warning to take doxy without food is only for tetracycline, which is in the same family, but does not apply to doxy, even though the prescription bottles say to take it without food!) My DH tried to take it without food the first 2 or 3 days, but couldn't then started taking with it crackers, only to find out later that he's supposed to take it with food, anyway. Personally, I suspect the stomach problems are due to the doxy, but we're doing everything we can to minimize it (food + 4 probiotic pearls per day + 4 sacchromyces (florastor without the lactose) per day. Thank goodness we all have each other to get through this herxing.

Is it possible that the infection could be Lyme? I know there's been a lot of talk about it, but given her age, and the fact that she apparently hasn't had problems in the past, I would think along the lines of something that she could have contracted easily and more recently. Lyme can cause these symptoms, they certainly could be a form of PITANDS, and I think it would be a good question to pose to Dr. C. If Lyme is a possibility, it would help for her to be able to ask the doc about that, as well, because it may not yet be chronic, and would make things so much easier to treat. Please keep us informed.

I PM'd you.

Each child is different. My boys showed and felt differently almost immediately (within 1 -2 days,) and they do present differently.

[very interesting.

I have a 17 year old, and that's not far off. We just figured it all out when he was 15, and are still trying to get appropriate tx. We are dealing with OCD, Bipolar look-alike, Asperger's, and suicidal ideation. 17 is not far from 23. Luckily, we are still in the pediatric range, but I suspect that my dad may have the whole thing, too, and he agrees. Here's where I would start: 1) contact Dr. C. Ask if her test is standardized for this. 2) Contact the NIMH. I realize that they are still in the experimental stages, but if pushed, they might be able to give you some ideas. 3) This is #1, and IMMUNOLOGICAL/AUTOIMMUNE/INFECTIOUS DISEASE process, and honestly, I would find a very top notch..immunologist (not allergy/immunology, but immunologist. Don't mention the word PANDAS, but rather mention that they have neuropsch symptoms following an infection (and tell them all the neuropsych symptoms.) I would even think that if you found someone who works with HIV, they are going to know about immune deficiency. Since few infectious disease drs. seem to know about immunology, and the underlying process really appears to be autoimmune, I think the immunology connection is the best bet 4) Alternative...Dr. B. may be able to help. He understands an awful lot about this disorder, and he is willing to learn more. He told us to check out Lyme, and we are. My husband has already tested positive, and all of us are being seen by an LLMD next week. Dr. B. is not only pediatric...he checked out my husband, and found the Lyme, and he checked out me, and found MycoP, which gave a very good reason for my uncontrolled asthma. I do think, though, that if you can get in with a very good immunologist who understands the neuropsych connection of all of this, you might be better off, because as the Turkish study shows (and I can attest to), PEX as a start does work really, really well, and may be what is needed to start the process. But, I would really start with a really good immunologist (after checking with Dr. C.) PM me if you'd like, and we can discuss this further. Good luck, and let me know how it goes. Oops...I'm editing this, because I forgot to mention to also have an LLMD, because they really need to make sure there's no Lyme connection.

I agree with everything everyone else has said.

Might have been. Here's my suggestion. It sounds like your immunologist is on the ball. I would drop the ID specialist at the least, and use the immunologist for your "team leader." Good luck. Big cyber hug.

Eating disorders in such a young child can be caused by strep infection or post infectious autoimmunity. You might want to have your son checked for strep. It can also be caused by other infections, and certainly sounds like it might be PANDAS/PITANDS/Lyme. I would suggest that you check out the PANDAS/PITANDS forum as well as the Lyme forum. On the PANDAS/PITANDs forum, there is a list of doctors and suggested blood work (I don't know if Lyme testing is on that list, but I would do it anyway.) Good luck.

Good luck. As most of you know, our journey has been a horrendous experience. They just agreed to start the whole appeals process over again, because I got proof that they had never listened to us in the first place (and my boys do have immune deficiency.) I think BCBS can be very mixed.

As an OT who specializes in working with autistic kids, I will go on record as saying that your child may have autistic-like symptoms, but it is not autism. I'm sure they are symptoms related to PANDAS, which causes inflammation in the basal ganglia, and who knows...maybe some other areas as well (honestly, I think that Autism as a whole is probably an inflammatory process in the brain, but that's another issue.) The fact that it came on at 5 years old indicates that the symptoms are being caused by something else...in his case an infection. As you know, my son has also developed speech problems off and on during his rounds of PANDAS (starting at 8 years old)...slurred speech, mutism, etc. Luckily, he has always come out of them within a few hours, but it's very scary. He also has chorea, tics, OCD, and all the other symptoms. He's been described by his psychologist as having "Autistic-like" social skills problems. My other son is diagnosed with Asperger's (came way before we figured out he had PANDAS,) but also not really identified until 4th grade, and officially diagnosed in 7th grade (but he was "different" from as long as I can remember).. Once we get the PANDAS symptoms under control (and hopefully we will be able to, because they are much older teens), we'll see what happens to those Asperger's symptoms. But, both my boys do present very differently...mostly in terms of social communication and socialization (even though they both have social skills problems...they're just "different" social skills problems), and I do believe that he probably really does have a co-dx of Asperger's. Their PANDAS symptoms are also quite different, as one has more chorea, speech involvement that comes and goes, tics, OCD, anxiety, rages, while the other has more depressive type behavior,rages, anxiety, OCD, breaking walls, and suicidal ideation. Both my kids are on IEP for OHI, and it really gets them all the services they need. Look up the diagnosis of post-infectious encephalitis, and see if that matches more of what you're seeing. I think Dr. L. sometimes uses that diagnosis for these kids. If you PM me, I'll send you an easy link to an article about it. I saw it, and there was no question it matched my guys.

Those headaches sound like either migraines or caused by inflammation in the brain. I would suggest you see a dr (maybe neurologist) about those.) As far as homebound is concerned. You would need to get a doctor's order, and it would be for a set amount of time (in PA it's up to 90 days at a time.) They would send teachers to you, and they would teach you what you are currently learning. It's usually about 1 hour per day, but you can learn a whole lot more individually than you can in a classroom, and you are assigned work to do on your own. Good luck.

Interesting about sarcoidosis. My hairdresser said she was just diagnosed with it, and I'm going to go over there today just to tell her about the possible Lyme connection.

I so agree with everything you're saying, and now just imagine that I have 2 boys 14 and 17, and also 6+ feet tall (plus I can't pay wholesale.) My kids are diagnosed with ID (through Dr. B.), and we can't even get them to pay, because it was coded as something else first (encephalopathy NOS,) and i suspect that they think we're messing around. If you didn't do it already, get a copy of the minutes of any verbal appeals that you have had with insurance, and also get the copy of the recording that they made (I just asked for it.) Our minutes were heavily edited (that's actually an understatement,) to the point that they don't even make any sense. The recording had some VERY interesting information on it that they didn't know existed. I saw a lawyer yesterday about it, and he said we have a VERY good case (particularly because of the tape.) That being said, it could take an extended period of time to get the payment, but if you're going to pay for it out of pocket anyway, I would see if there's anything you can do to possibly get it paid for in the end. I just emailed my pediatrician, and asked him to get in touch with Dr. Grant to see what the deal is. I'm also going to call Dr. B's office on Monday, and have them check into it, because if it is truly the case that IVIG has now been accepted as apprpriate care by the NIH (perhaps the study is done, and they are just waiting to get it published?) this could also help all of our cases. Unfortunately for us, we are stuck waiting for my kids to get treatment, while we fight, because I don't have $30K (it's $15K per child), and they are getting sicker by the minute. I am SOOOO furious with insurance. I'm also going to send all this information to the state insurance commissioner. The lawyer we saw yesterday said that BCBS is one of the worst.

I agree to be careful how it's written up, BUT, if it's true that it's no longer "experimental", and the NIH will support that position, then BCBS does not have a leg to stand on (they are denying us because it's "experimental", but my boys also have an ID, and they are refusing to accept that, and banking everything on the PANDAS they saw listed in his paperwork (we're fighting.) That being said, it's the "experimental" part that they can no longer fight, and it sounds like there are some great pediatricians out there. I just had a battle with mine the other day. He's been supportive on some things, but just won't coordinate with Dr. L, and Dr. B, and it's caused for some very hairy moments with one of those docs. He says that he's not comfortable treating PANDAS (even though I've given him tons of literature, he knows who to talk to, etc.) and I should leave it to the specialists. Unfortunately, the specialists are at least 2 1/2 hours away, and every time my kids get sick (like right now), I can't go driving to one of the specialists to play around with their abx. So, at the moment, but children probably have a really bad case of strep (at least my younger son), and I'm fighting stupid battles again (with all the time I have..hah hah!) My pediatrician thinks that the way to treat their PANDAS/immune deficiency/post-infectious encephalopthy is. "1. Intensive PT 2 x per week. 2. See a Psychologist weekly with experience in chronic illness especially chronic pain. 3. Resubmit all requests to insurance using the Rheumatic Fever diagnosis. I know this is a different approach from yours, and please don't take offense as I know these are sensitive issues for you. I am not discounting PANDAS, I am just telling you what has worked in my medical experience." Oddly, though, you have to have a diagnosis of "ARF"...you can't just make it up, and as I pointed out to him after getting this email from him yesterday, this is what I was trying to do about 1 year ago, when he gave me the referral for the rheumatologist. He also thinks that PT is going to help my son when he suddenly gets severe low tone from the encephalitis (currently one of his hands is completely flat...last year both hands were completely flat, and it hurts for him to pick things up and write! So, if PANDAS is no longer experimental, and we can get that in writing from Paul Grant or someone else high up at the NIMH, that could solve all our problems! Great work and sleuthing ThomasMom, and thank your pediatrician for us. BTW...do you by any chance live near Philly (I'm north of philly, near trenton). I need a pediatrician who is totally on board like this. (I am going to tell ours what yours did, though I don't think it will make any difference at all.)