cobbiemommy

I like being back into one forum. I found myself repeating things, also. As we unravel the knots of our kiddos medical issues, we might as well all be together!

They had confirmed receipt of the documents each time (three), so I don't see how they have a leg to stand on either, but I'm not a lawyer. Advocate says that insurance companies do it all the time. I wish I still had my rose colored glasses on how life works! Ignorance was definitely bliss.

I would highly recommended IVIg. Frankly, if strep is your issue, I don't see how you can avoid treating an active infection with antibiotics. Not trying to be confrontational, but trying to be direct on your options in treating an actual strep infection. Probiotics are wonderful, whether your child takes antibiotics or not. ERP therapy can be very helpful if your child is well enough to fully participate. The therapist may give you some good ideas on how to not play into your child's obsessions. I wish I had known a lot of those strategies several years ago. I developed some anxiety as a teenager after having Scarlatina (which I now know is Scarlet Fever). I would not want any young person to have to go through that unneccessarily.

Our immunologist had prescribed HD IVIg every eight weeks for one year, but did not think it would take that many. We will never know, because the insurance company went back on their promise to pay. We had three and were trending in a great direction. The good news is that my son is in nowhere near as bad a place as when we started. My son is 13 and had been sick since he was 3. Sometimes I feel like Woody in Toy Story, when Buzz says, "We missed the truck. Woody says, "I'm not aiming for the truck." That's me and my son, we are not aiming for better, we want to be riding up front in the car!

I used to think DS never got sick. But after we got a hold of his doctor's charts from infancy; I see the pattern of sinus/ear infections. 12 in the first 24 months of life. But when you have two little ones, you just think it is the normal stuff of childhood. However, there were notes in his charts where I questioned the constant nail picking (an OCD behavior, although I did not know it yet) at around 24 months. This is younger than the three year old criteria of Swedo. He also had atopic dermatitis (excema) and still does on his face since he was about one year old. Hindsight is always 20/20!

I will site the papers, tomorrow. I do not care for the opinion of Steere too much myself, but when two respected doctors from very different points of view advocate for the same treatment for the same reasons it would seem to be because that treatment is effective.

The advocate says that this is a common practice. He did tell us "Do not call the insurance company and complain." Despite my temper, I have not called. Whew! The advocate has everything well documented and if it goes to government review; it will really make the insurance company look bad (or in my opinion, deliberately incompetent).

I called our advocate to check on the status of our appeal. The person who answered the phone was not sure and called the insurance company. The insurance company lost our appeal paperwork. Needless to say, the advocate faxed it again, but she said the process begins again with today as day 1. How is that possible? This is the same company that "lost" our precertification paperwork and then refused to pay for three HD IVIg. Also, they wanted to reevaluate going forward whether he still needed IVIG. I am beyond angry. I feel like our family is being hit twice: once by the illness itself and then by the insurance company denying benefits. This doctor is in network with our insurance company, so I am just stumped what to do next.

We had our meeting for IEP today and found out that son no longer qualifies. yeah. We will meet again to discuss 504 plan. Here was something interesting. While son scores very high on verbal IQ, he does not score very well on memory or processing IQ (a difference of at least 30 points). We had a spect scan done several years ago, before Lyme treatment began in earnest, and it showed temporal brain hypoperfusion. This is the part of the brain that leads to processing/exeecutive thinking. In my mind, there is a connection between the Lyme leading to hypoperfusion which in turn leads to poor memory. Columbia University (Dr. Fallon) and Brigham and Children's hospital (Dr. Steere) also see the connection and have published papers about it. The treatment of choice for this condition is IV Ceftriaxone. It usually works very well, although sometimes the patient regresses after treatment is discontinued. We have been at this for over 2 1/2 years and he finally tested CDC positive in December. DS still has severe ankle pain, especially in the morning and pronounced fatigue. Do I ask Dr if there is an oral alternative to Rocephin? Do we ask about IV Rocephin? I am very scared of a PICC line and possible infections. Read, terrified. I want to err on the side of caution. We have appt in 3 weeks, so I am trying to come up with my list of questions.

Sounds like something allergy triggered to me. My son went through the same thing when the pollens from trees and ragweeds were in high gear, generally in April/May and Aug/Sept. Last year required steroid tapers to bring him out of it.

A scrip can be written for an OTC medication to ensure insurance will pay for it or to ensure access to the medication at any time. My nephews have horrible allergies and take Sudafed. Sudafed is an OTC medication. But in Missouri, it has restricted access because it is used in the production of methamphetamine. You must be at least 18 and can only buy so much in a month's time. Well, with three boys under the age of 18, all with sinus issues, that was not going to allow her to buy enough medication to last for a month for three boys and herself. So, the doctor wrote a scrip for each child and she is able to get enough for their family without being labeled as a possible methmaker. Interesting, huh?

Rifampin is a very old antibiotic and a must have when dealing with Bartonella. It must be used in connection with a broad spectrum drug to be effective against Bart. I believe it works by blocking replication of the organism. Don't quote me on that. Expect to see a ramp up of symptoms in the first couple of weeks and then things should get better. Best of luck to you.

I am so happy to hear this news. Keep posting the good stuff!

My son also has Lyme, which we originally thought was just PANDAs. We also see Dr. J and Dr. B. Dr. J says that steroids can be used in dire situations, when nothing else will calm down the inflammation and makes the child totally nonfunctional. We have had to do this twice and if nothing else, it gives you a glimpse of how good life can be when your child is feeling good. We finally tested CDC positive in December after several years of only being inconclusive on tests. One symptom that you will see with Lyme that you don't with PANDAs is fatigue. My son has so much fatigue and joint pain. We were prescribed a mito cocktail (By yet another dr) that has really helped with the fatigue. He is able to do a little more activity. Yeah!!!! Things may get worse before better, but the better is so worth the wait.

DS, was put on Risperdal and Prozac at 6 years old. What the heck.... It sent him off the deep end. I thought he was going to seriously hurt himself. He acted like he was possessed. I didn't know what he had, but I knew the meds had to go. We stopped both of them and later came back with a very low dose of Prozac. Prozac at a very, very low dose can have an anti-inflammatory effect. Now that I have seen how much antibiotics and IVIg have helped our situation, I am just stunned at the way the medical system looks at a whole generation of children. Dispensing pills is easy, practicing medicine is much harder. Cobbie

We are just across the border in Missouri.

I did have the immunization record in the packet. Whoo hoo. But I need to put a little description of his various treatments and his responses. For us, the first IVIg and steroid tapers have been the best treatments. I will look up that site!

We will be seeing a new immunologist for DS, 13 on Thursday. We had been seeing Dr. B and I still love his practice, his style and believe in him wholeheartedly, but we have good reasons for possibly switching to someone new. #1) Insurance will not pay for DS's IVIg even though they precertified his treatment. So, I am hoping this second opinion will verify the first doctor's opinion and thus force the insurance to pay. (Precertification is even more involved and binding than a simple preapproval. We have retained a lawyer to work on the appeal, but meanwhile DS is getting sicker and more fatigued.) #2) The travel was just killing us financially, mentally, and physically. #3) This doctor is across the state, but still within the state borders, so possible IVIg could be obtained at our local hospital or CORAM or something similar if needed and doctor agrees. Our doctor was recommened by the Immune Deficiency Foundation and he is part of the Jeffrey Modell Foundation's network of doctors. If you have not looked at their websites, I highly encourage you to do so! I am not 100% sure of what to take to this new doctor. I am reluctant to say PANDAs until I feel out his reaction to the topic. In my packet I have copies of all of the labs from the last several years. Most of the results are horrible and consistent with primary immunodeficiency. Also, I have listed the contact information of the docs we have seen in the past year (DR B, DR J, and Dr T) and his local pediatrician who is very supportive and believes that Ryan is showing improved results. I have listed all of his medications and the few supplements he takes. I have pictures of the Bartonella rash that flared right after his first IVIg. The rash looks different now, but it is still there. I also thought about taking pictures that show the changes in his smile and posture??? He went from a typical smile to a full on grimace that has lasted a loooonnnnggg time. What else should I take with me? Should I take copies of Swedo's published work? Truth be told, I am scared. The last time we went to a hospital that dealt with children we saw an infectious disease doc that did no blood or lab testing and told us we need to see a psychiatrist. Right after that is when Dr. B found the intracellular strep in his nose... Let me know if I have missed anything. Cobbie

This will be long, so bear with me. DS, 13, has been treated for Lyme Bartonella, PANDAs, and Mycoplasma for two and a half years. He was being treated for Primary Immunodeficiency with IVIg until the RAT******* at Cigna decided not to pay for any of his IVIG even though it was precertified. We are in the appeals process right now. He is also being treated for possible mitochondrial disorder. He just got the prescription strength mito supplements this week. His Bartonella rash has really flared up in the last week. Could this be a herx, maybe, but it is H*** on earth for our household. Every Friday, they play dodge ball at PE time. It seems a cop-out to me as far as lesson planning, but public school is what it is. DS, gets very riled up and competitive (sometimes nasty) when they play dodge ball. Today, another boy targeted him and kept gunning for him at Dodge ball and hit him at least once in the face and bent his glasses. My son complained to the teacher as he does often (not good, I know, but he does not do well about solving the problem on his own.) That is part of his OCD; fixating on someone who has "wronged" him. In a way it is a kind of evening up, you got me now I am going to get you. Anyway, DS complained to the Vice principal and spent a lot of time in the office, getting worked up, going round and round in circles with this whole situation. They would not bring in the other kid, so the boys could work it out and now they are removing him from PE until they can think of a better alternative. This is his favorite class, so to be taken out of PE is horrible for him. He hates school for the most part, and that is one thing he looks forward to. He has been raging since I picked him up at school. I'm not sure what to do other that DH is calling the school on Monday to talk about the situation. DS is a big boy, 5'9" and 200 lbs; he needs PE both for his health and to get some of his energy used up. Could the mito cocktail be amping up his bodies response to antibiotics? We cannot do any kind of steroid taper because we have an appt with a new immunologist for a second opinion for the insurance and we need for him to be able to get a clear picture of the physical situation. I just feel like no one cares about him and us; not the insurance company, not the school, not even the doctor since the insurance does not want to pay.

We did the $100 per test option and it worked like a charm. Our test uncovered a metabolic abnormality that we are going to go over with the immunologist.

Strep can also cause a version of arthritis called polyarthritis. The treatments are usually steroids, IVIg, or antibiotics or antivirals depending on the root cause. My son has had horrible ankle pain and joint pain in his fingers and wrists. He is being treated for Lyme and Bartonella and preventative treatment for strep. He has achieved total remission of his pain symptoms while on a steroid taper, so I believe there are treatments out there that will bring relief. It is just a matter of finding the right one for your child. Do not blame yourself, if you could have done something differently I am sure you would have done that. You are seeking the best care for your child now and that is what is important. Cobbie

I would say you need to get to an immunonologist, especially one that specializes in PANDAs. If not that, at least an immunologist. You already have a history of autoimmune activity, so they should be able to build on that nugget of information. I don't know where you live, but if it is in the Midwest, I can tell you one hospital not to go to if you PM me. The parents on here are great and know that you are not alone!

Showering and brushing his teeth were two of my son's issues as well. He still won't shower in the "kids" bathroom because some of his sister's hair (very long and curly) might be in there. The first IVIg and treatment for Bartonella helped a lot. Hang in there... Cobbie

Simply nauseating!

My son paces when his brain is in a swirl. He needs to be busy. My mother used to tell us kids, "Do something, even if it's wrong!" She probably did not mean it that way, but when I get stressed I try to stay busy (this is when things get a deep cleaning!) Your son is pretty smart!!