jayjay

My ds10 will not be getting another vaccination, ever! At age 5 and 9 he had exacerbations from strep that he completely recovered from. In November of last year we gave him the flu mist that immediately sent him into a horrible exacerbation and he hasn't been well since. He has had a cronic sinus infection since that day.

First of all, there is nothing wrong with you, you just want to help your son. I think you should do what your heart tells you to do, but let both Dr.s in on it. I know Dr. B would be willing to speak with Dr. J. if you choose to do the IVIG with him. He has spoken to my son's ped., psych, and ENT. Maybe if they speak to each other they can work out a plan that is best for your son. Then you don't have to be sneeky. Being sneeky will only add to the anxiety and confusion.

We have United Healthcare/Oxford. My husband's company just switched to them in January. They were not the insurance company that paid for my son's hospitalization, that is why I assume they do not care what happened a year ago. The one thing that we hope might have some weight with the appeal to the state is that United Healthcare (the parent company of Oxford) has a code that covers IVIG for PANDAS. Like I said, we will not hold our breath. Right now, I am just thankful that we did the IVIG and my son is doing better, not perfect, but out of the dark scary place that pushed us to make the decision not to wait.

We have submitted every study and paper we could find to our insurance comapny. We used the analogy that the zoloft that my son had been on was like trying to fix a hangnail on a severed finger. The zoloft would cover up symtoms while causing more symtoms and never getting to the root of the problem. They did not even care that my son had been hospitalized for trying to harm himself. That hospitalizion alone would have paid for a few IVIG treatments. If a child killing himself is not alarming enough to them, I'm not sure what would be. If you find the magic words or papers that will change their minds, please let me know. I'm so sorry that you have to go through this.

Dr. B. can get you covered if your child has an immune deficiency. My son happens to be one of only two patients he has not been able to get coverage for. We've been denied three times by insurance also. We just sumbmitted our appeal to the CT State Insurance Commission. Sadly, we are not very hopeful that the denial will be overturned. I absolutely hate the fact that we have spent countless hours on the phone and have written mountains of paperwork to people that just don't care. Bottom line is that IVIG is considered investigational and experimental with the code that Dr. B had to use because my son is not immune deficient. Our son had IVIG 7 weeks ago that we paid for out of pocket. We are just praying that one will be enough.

I wish that were true. We happen to be one of only two people that have paid out of pocket for IVIG with Dr. B. Melanie, I think your chances are very good that you will be approved because your child is already getting IVIG. It really depends on your insurance company and what they will cover if you are out of network. Dr. B. does all that he can to get you covered, it is rare that anyone is denied. We just happen to have stinky insurance. You should know soon, or maybe give Stella a call and ask her what the status is.

Yes, he told us we are only the 2nd person that he could not get covered. My son's bloodwork does not show that he has an immune deficiency. He is autoimmune. Don't ask me what the difference is. Anyway, UHC/Oxford believes IVIG is expiermental and investigational and will not cover. We are in the process of appeal to the CT. state insurance commission, but as with everything else in this PANDAS world, I'm not holding my breath. Already paid for the first IVIG out of pocket, can't do another one. We are 6 weeks post IVIG and I do have to say we are better, but no where near 100%. We will have to hope that with more time we will see more improvment and we find the right combo of antibiotics that will sustain a remission for him. Good luck, you are in good hands with Dr. B. (and Louise)

I spoke with Louise yesterday, and the infusion center should be complete and ready to take patients the week after next (week of 7/19). This, barring any delays. This will be at the Darien office. Karen That's right, I forgot about the infusion center. I think I am subconsiously blocking it out of my mind because we will never be in it because of stupid insurance!!!!

It is done in one of the exam rooms. Louise is the nurse that does it. She is the best!

My son was on 100mgs of zoloft before we had a PANDAS diagnosis. We weaned him off over a two month period. We knew we were moving toward IVIG and I wanted him to be off of it before he had it. We did see a ramp up of OCD and anxiety while were were tapering but we "rode it out" knowing that I did not want the zoloft to be a factor after the IVIG treatment. We are about 5 weeks out from IVIG and waiting for it it "kick in" but very glad he is off zoloft!

We are probably one of the negative posts you are talking about. He is almost 5 weeks out. Our problem was we just could not keep him well after IVIG. The stomach bug and a sinus infection hit him hard right after it. It didn't even get a chance to work. We seem to be having some improvment the last couple of days, not perfect, but going in the right direction. Not sure if it is the IVIG kicking in or the new antibiotic. Even with our slow progress, I would do it again if insurance approved it. We are still fighting that fight. He will also be having a T&A soon. I feel like I have to do everything I can to get my son back. All of this is so hard and scary. I am constantly second guessing myself. I just know that with our situation, we had to do it, it was bad enough to feel like we really didn't have a choice.

wornoutmom, I am feeling the exact same way and we are 4 weeks out from IVIG. The first two weeks he suffered from headaches and nausea. Then the anxiety and rages began and have gotten worse, especially the last few days. I know there is still time left to see improvement, but this is so discouraging. We see Dr. B. again today. I don't even know what to say or ask for. I just thought I would be in a different place right now. I know he told us we could do a prednisone burst to ride out the "turning of the pages" Maybe that is something you can try. My son has been on 21 day tapers 4 x since January so I am trying to manage without it. I will say my prayers for you and you son and hope that we can all end this living nightmare very soon. Since the IVIG I have not been able to keep my son well. So I guess it's not even getting a chance to work. At our trip to Dr. B. on Thursday he could tell he was starting another sinus infection, not to mention the day before my son spent the day with his best friend who now has strep! We left with new antibiotics, blood tests for the family, lyme tests for him. We're doing things a little backwards, but the IVIG was done on sort of an emergency basis. Dr. B. assured me that the IVIG will work, it's just going to take longer. To top things off, we literally drove into a tornado on the way home. Lucky to be alive, but still feeling like the dark clouds are hanging over our heads. Wornoutmom, I hope during the weekend things turned around and you are seeing some improvement.

wornoutmom, I am feeling the exact same way and we are 4 weeks out from IVIG. The first two weeks he suffered from headaches and nausea. Then the anxiety and rages began and have gotten worse, especially the last few days. I know there is still time left to see improvement, but this is so discouraging. We see Dr. B. again today. I don't even know what to say or ask for. I just thought I would be in a different place right now. I know he told us we could do a prednisone burst to ride out the "turning of the pages" Maybe that is something you can try. My son has been on 21 day tapers 4 x since January so I am trying to manage without it. I will say my prayers for you and you son and hope that we can all end this living nightmare very soon.

I soke to Ellen a couple of months back about a support group in CT. Hopefully she will see this post and chime in. She lives in south westernern CT. She talked about having it at her home but I'm sure a central location can be picked if we find out where everyone would be coming from.

This was main hurdle that kept my son from being diagnosed with PANDAS earlier than he was. A Dr. at Yale told us that because he could hold it together at school there was only a 20% chance of it being PANDAS. He explained that there was no possible way that he could have control over the inflamation of his brain. I understood what he was saying but I knew in my heart this was something much larger than temper tantrums in my 9 year old. Holding it together all day at school during an exacerbation meant when he got home it was like opening up a flood gate. The teachers had no idea what was going on at home. I was always thankful for that. Unfortunately, this last exacerbation, he could not hold it together at school. This is one of the reasons we finally decided to do IVIG. It had become unmanagable for him and us.

I feel like my replies might have been confusing some. We have United Healthcare/Oxford which is different than UHC. We were denied (only the second patient of Dr. B's to be denied) because he had to submit him as autoimmune not immune deficient. If my son was immune deficient he would have been covered. The Oxford plan does not have a PANDAS code and they consider IVIG for autoimmune experimental and investigational. It really varies on what insurance company you have and how your child presents. The Oxford plan really stinks : (

wow even bc&bs denied! keep fighting, hope you get it. so maybe i should just look in to seeing dr.b if we dont have to pay up front. dd is not immune deficient , so that wouldnt work as a reason. $8000 for 95 lbs. is cheaper than chicago...... is everyone generally happy with the results? Just to clarify, we did have to pay up front. We had to give the the $8,00.00 check before we left the second day of the IVIG treatment. As for results, he is just a week out and has been very sick since the IVIG. Stomach ache, vomiting, nausea. Dr. thinks he contacted a stomach bug and it's not from IVIG. I think there is a grey cloud hanging over our heads : (

I'm not sure you could do it all in one appointment. He does do phone consults so that is something you could ask. I believe they gave us a break because we had to pay out of pocket. The total was $8,000.00. My son weighs 95 lbs.

My son just had IVIG with Dr. B. last week. He told us my son was only the second person that he was not able to get covered by insurance. We have United Healtcare / Oxford. They would have covered if his bloodwork showed he was immune deficient. Which he is not. Dr. B. submitted it as autoimmune which UHC considers IVIG expieremental and investigational. I think it really depends on the insurance company. We just happen to have one of the worst.

Angela, I'm sure you are covered if the staff called and told you that you were. I'm guessing that my son's case was entered under a different code. They denied saying that IVIG was "expierimental and investigational" None of it makes sence to me. We will just appeal until the end. What matters is my son will be gettting IVIG today and tomorrow and I will worry about the $$$ later. Good luck with your daughter, maybe we will run into you at Dr. B's sometime!

Dr, B. explained immune complexes to us at our last visit. I'm embarrassed to say that it felt like he was speaking a foreign language. My son is getting IVIG tomorrow so we did not get the test done, but he believes it is another tool that he can use to help diagnos PANDAS. Hi jayjay - I just wanted to say a quick "hey." My younger son had IVIG at Dr. B's two weeks ago, and we will also be there tomorrow for Day 2 of my older son's IVIG. Today went really great! I believe you and I will be the only ones there for IVIG tomorrow... I will pop in and say "hello." Best of luck!!! - Karen Looking forward to meeting you!

Dr, B. explained immune complexes to us at our last visit. I'm embarrassed to say that it felt like he was speaking a foreign language. My son is getting IVIG tomorrow so we did not get the test done, but he believes it is another tool that he can use to help diagnos PANDAS.

Thanks, Buster. It would be interesting to know the politics of why UHC is more willing to cover treatment for PANDAS (or even recognize PANDAS as a real disorder) than other companies. Also, interesting- my daughter has secondary insurance through the state, which is contracted out to a subsidiary of UHC. The subsidiary has denied claims that the parent company covers. We have UHC/Oxford. They do not cover IVIG. It doesn't make sence that a parent company will cover, but a subsidary won't, but not much in the insurance world makes sence to me. We have appealed twice and we are waiting for our third denial so we can take it to the CT. Insurance Commission. As we continue the fight, my son will be getting IVIG with Dr. B. tomorrow. I will have my $8,000.00 check in my hand that we robbed our 401K to get. Momaine, I am truly happy for you and all the other parents on here that have that one less battle to fight with this horrifing disorder. You are very lucky that you can consentrate on getting your child well, instead of preparing mountains of paperwork and spending countless hours on the phone with rude people that don't understand or really care. I'm sorry, I didn't mean to be a "downer" on this great news thread. We are blessed that my son will finally be getting the treatment he needs. Let the healing begin...

My son 90 lbs. takes 375mgs of zithromax per day. It really helped him. He definitely did not get worse before he got better.

I realize I am probably fighting a losing battle, but I've been fighting this disorder for the last six years and I'm not going to stop now. Our insurance company has denied IVIG treatment for our son so we are in the appeal process. My question is... Is there anyone out there that has United Healthcare/Oxford and has been approved for IVIG? Thanks!