cobbiemommy

Friday, we received two envelopes from insurance company. Envelope number one: they are paying on most recent claim for preapproved HD IVIg (October, 2012) If they pay for one in the series, they will have to pay for all (three total). It was precertified and they should have been paying all along. Envelope number two: Doctor that prescribed HD IVIg is no longer a preferred provider with that insurance company. The reason I feel we lost the war with the insurance company is that: original preapproval for IVIg ended in May of 2013 and DS only received 3 of the possible 6 HD IVIg he could have had because insurance would not pay. His condition deteriorated during that time and now that we know they will pay if forced; the doctor is out of network. As if PANDAs is not bad enough, we have to be abused by the insurance company as well. This whole situation has turned me into a very bitter person.

DS, just had testing done for tumor necrosis factor, not genetic, but for the presence of the antibodies. So is the treatment the same, IVIg?? We do not have any test results yet. This is great news for everyone.

This was not an allergy test. It was supposed to measure an immune reaction, or lack thereof. I know that it is supposed to measure immune reaction against two common known antigens-candida and the tetanus. I will keep looking for answers as well.

DS, had a skin prick test at the doctor's office on Mon. On the left arm, he received a tiny prick and the tuberculin antigen. On the right arm he received a tiny prick of candida in the upper half of his forearm and diphtheria toxin on the lower half of his forearm. I hope that is the right name for the diphtheria/tetanus antigen. After 48 hours, I had to document the size and color of any reaction from the antigens. There was no reaction to the TB antigen and the reaction to the candida was smaller than 2 mm and no color. The diphtheria/tetanus was mildly pink and about 2 mm in size. Does anyone know how to interpret these results? I believe it means that he makes no antibody response, but I'm not sure. Thanks, Cobbie

Encephalopathy can cause fatigue. Autoimmune?

We met our new Midwestern immunologist, today. He is knowledgeable and was very supportive and totally understands PANDAs. He wants to build a team, with an ENT, a neurologist and whomever else we need to solve the puzzle. We are still keeping our LLMD in the loop on all of this. While I am grateful for this approach; I am exhausted to start again. Tomorrow, we start making appointments and have some new blood testing done. (Can you believe that there are blood tests that our kids have not had?!?!) Two "aha" moments of the day. First, the doctor's office is literally across the street from a quack that we went to at the start of this mess. Second, my supervisor (and good friend) called to tell me that my coworker's husband has lung cancer. I jobshare with her and feel terrible for her. Our part-time jobs are ending because of restructuring (I hope to be hired for full time) so she will probably take FMLA and not come back to work. Cancer puts PANDAs in perspective. If anyone wants the name of this immunologist, please PM me. "Tomorrow is another day."

I think we all can benefit from reading inspiring stories and learning to live in the moment. There are so many times when I compare my son (unfairly) to other "typical" boys his age that it breaks my heart. But when I look at how far we have come and that he is a loving, helpful, intelligent young man I still feel blessed.

It is great that you have a doctor in your corner and they are helping you get a team of good docs to help your child. I'm so happy for you.

After three months of IV claforan, DS's PICC line is being taken out tomorrow. As scared as I was to put that thing in, I'm thrilled and scared to take it out! He is physically doing so much better; he is working out to the extent that he can with a PICC line. He has lost maybe five pounds and looks much more fit. I'm scared because of the thought of a relapse, but he will still be on orals for maybe six more months. Plus, the wonderful Dr. J and his staff are still in our corner and I feel we are supported in his treatment. I was thinking of some of the interventions that have been done to and for our son and the list is long... 1) Lazy-eye surgery (big difference, not 100%, but probably 95% better) 2) Podiatrist consult, orthotics for shoes (made a huge difference) along with tendon loosening exercises 3) Three months of IV abx 4) One steroid burst 5) Two steroid tapers (awesome) 6) Six months of Bicillin shots in his rump (horrible) 7) Two plus years of oral medications (never would have been enough) 8) Allergy shots 9) Four HD IVIg (very helpful) 10) GFCF diet, not helpful, but also not restarted after Lyme diagnosis. He would never have complied, so we just tried to eat as naturally and healthfully as possible. With all that being said, we are not at 100% yet. He still talks to himself while he is on the computer and he still wants to spend too much time on the computer or game; but part of that may be learned behavior. He still needs to rebuild his stamina. I still feel that there is some autoimmune component going on, but until I can talk to Dr. J. and Dr. B, that is just my suspicion. We still have some more bloodwork to run. For the next few weeks, we are going to enjoy what is left of the summer with swimming, bowling, amusement parks, and whatever else comes to mind.

I would recommend skin testing for allergies, not just the blood panel. Your child may be highly reactive to airborne pollens, thus activating their whole immune system. Skin testing and allergy shots (very tiny needle) are still the gold standard of inhalant allergies. Also, I would wholeheartedly agree about testing for mycoplasma, lyme, bartonella, and other coinfections.

They were borderline normal. Dr. J did not want to treat, but Dr. T was willing to try. We ended up sticking with Dr. J's protocol and thus discontinued Armour. Had not seen real improvement in three months of dosing.

Ah, finally someone else's child who is perfectly neurotypical on steroids. My son is being treated for Lyme, Bart, and Mycoplasma. He has been on IV for three months and while his physical issues have improved, his memory and concentration issues seem the same (not so great). He has had two prolonged steroid tapers and they were just unbelievably amazing in terms of recovery. He would be relatively quiet ( no talking to himself), want to go out and do things, he slept well and had energy and his speech pattern was perfect. Sometimes, I feel like I dreamt those things or that they did not really happen. I also think the steroids were more effective than the IVIg. How to get these results and maintain them long term??

Benadryl is anti-inflammatory. Take the motrin with food, preferably in the middle of a meal.

We are dealing with a self insured large national company. The administrator is Cigna. Not very happy with them.

Due to insurance company stonewalling and ignoring all requests to settle claims, we are forced (compelled) to go to next step and hire a lawyer to get after them. If you can believe this--my family doctor referred me to a wonderful lawyer that is experienced in insurance litigation. Maybe that was his prescription for overall good mental health??? DS, 14, was precertified for IVIg every eight weeks for up to one year and then it would have to be reevaluated. Doc assumed it would take six sessions based on DS response to treatment. DS responded well to steroids and to IVIg. We had three treatments and DS was doing really well, he was also being treated for Lyme at the same time by a different doc. He was an A student, had good energy, and was relating well to others at school. Insurance never paid for first three treatments, and would not pay for anymore going forward. We started appeal immediately. Then we hired insurance advocate to work for us. Insurance company supposedly lost original precertification paperwork, then repeatedly requested we send paperwork to different phone numbers, different people, etc. Each time we had to send paperwork, the clock started over again on the appeal, each time they got another 45 days. Time ran out on the original precertification. DS has went from A to C student and again is demonstrating the encephalopathy symptoms; irritable, unfocused, can't remember things, talking to himself all of the time, gait issues. I feel like we fell down the rabbit hole ten years ago and we are never getting out. Advocate says insurance is acting in "Bad Faith". I hope lawyer can make them see the error of their ways without this going to court. I am supposed to meet with attorney to go over details. I just want my son better-that's all!

5 mg of prednisone is a very small dosage. I would look up prednisone dosing for autoimmune disorder on the internet. There is a formula... DS was on a taper that started at 60 mg for 6 days, and then tapered slowly from there. His weight at the time was 190. This step (steroid taper) was not taken lightly; DS was non functional at the point we started. Within a week, he was wonderful and by the end, I was ecstatic for his progress. I just wish it would have lasted.

The only things that stopped our son's descent was IVIg and steroids. They seemed to arrest the symptoms long enough for the antibiotics to kick in. That being said, we are almost three years into treatment with ABX, and I still see some of the same behavior you are seeing; the talking to himself. DS, also laughs inappropriately (read excessively) in movies. I wish you all the best.

I will respectfully disagree. Ds, 14, has Lyme/Bart and previously had strep which led to full blown PANDAs. His brain was so inflamed that he could not think rationally. The autoimmunity led to brain issues. He could not walk properly, had horrible balance, memory and cognition problems. These are all neuro issues. I do not believe they can be neatly separated into unrelated categories; the body and brain are two parts of the one person. An insightful doctor, of whatever specialty may be able to help with the whole person.

This information is from Mayo's website, sorry it is so dense: In another study, Dr. Aksamit investigated herpes simplex encephalitis (HSE), a neurologically devastating illness associated with substantial morbidity and mortality in adults and older children. Recognition of HSE, and distinction from other forms of encephalitis, brain abscess or mimicking disorders early in the course of evaluation facilitates early treatment, which can prevent disastrous neurologic complications. The combination of clinical characteristics, magnetic resonance imaging of the head, and polymerase chain reaction (PCR) analysis of cerebrospinal fluid for herpes simplex type 1 DNA is a sensitive and specific way of diagnosing HSE for proper treatment. HSE is treated with acyclovir 10 mg/kg every eight hours intravenously for 21 days, unless the illness is mild, or nephrotoxicity occurs. Whether prolonged therapy with oral antiviral treatment after standard intravenous acyclovir offers any advantage from the standpoint of neurologic morbidity or mortality is unproven. PCR–negative typical cases and PCR–positive atypical cases of HSE can occur and require treatment with acyclovir. The study is published in Current Treat Options Neurology. 2005 Mar;7(2):145–150. Several Mayo Clinic researchers (Drs. Aksamit, Castillo, Woodruff, Caselli, Vernino, Lucchinetti, Swanson, Noseworthy, Carter, Sirven, Hunder, Fatourechi, Mokri, Drubach, Pittock, Lennon, Boeve) investigated steroid–responsive encephalopathy associated with autoimmune thyroiditis (SREAT), often termed Hashimoto encephalopathy, a poorly understood and often misdiagnosed entity. Their goal was to characterize the clinical, laboratory, and radiologic findings in patients with SREAT to potentially improve recognition of this treatable entity in a retrospective analysis of clinical features and diagnostic test data. These researchers found that the clinical, laboratory, and radiologic findings associated with SREAT are more varied than previously reported, andmisdiagnosis at presentation is common. This treatable syndrome should be considered even if the serum sensitive thyroid–stimulating hormone level and erythrocyte sedimentation rate are normal; the cerebrospinal fluid profile does not suggest an inflammatory process; and neuroimaging results are normal. Until the pathophysiologic mechanism of this and other autoimmune encephalopathies is better characterized, they conclude that descriptive terms that reflect an association rather than causation are most appropriate. The study is published in the Archives of Neurology. 2006 Feb;63(2):197–202.

Can you post specific virus and titer information? It will help people to clarify your situation.

White blood cells went up in first month of abx. Stopped abx and restarted again. Liver enzymes are always borderline, sometimes elevated, sometimes right at the limit. Don't know about spleen.

I don't think this is a circadian rhythm issue. He will be sitting at the computer and is so hot that he is sweating and complaining of being hot. Today, he was watching some television around noon and was sweating again, so he turned on the ceiling fan. Could it be that as we are killing off the Lyme, that Babesia is rearing it's head? We are of mixed opinion about Babesia. One doctor said yes, one said no, and one said maybe...

Ds, 14, has a low grade temperature every day ranging between 99.2 to 100. This is usually around midday. By evening his temperature is usually normal. I have been using old fashioned mercury thermometers to ensure consistency of readings. He is on IV abx, so I hope this means we are driving the buggers out. Anyone else experience this?

This is just my personal observation, one M.D. calling another can carry more impact than a dozen calls from you to the office. I know it is not fair, but think of it as chess game and the Queen (you) will win if you outmaneuver your opponent (disease). Have any or all of your doctors call Dr. N. Ask as many of them as you think could help you, because only one may have the time to actually make the call. Good luck.

I am no expert on anything viral, but could persisten viruses cause an autoimmune reaction. Then maybe it could be what is keeping her awake.