T & A #2 fingers crossed!

[JoyBop]

DS had his T&A on Halloween. We are praying it is the same miracle cure it was for DD who had hers a little over 2 months ago. We got home from the hospital last night. The behavior is great but the fears still seem to be there. Im going to give it time as I realize some things will be slow to release due to habits. DD was only 4 and she let it all go. DS is 8 and has had plenty more time to mentally obsess over things.

 

Question..Does anyone know the specific studies that negate tonsillectomy as a treatment for PANDAS? The only one I seem to find is that children who have already had the surgery prior to PANDAS onset are just as likely to develop PANDAS as those who have not. There was not enough data to say one war or another the outcome of an active PANDAS flare had any effect after removal on tonsils.

[JoyBop]

Specifically, does anyone know why the NIH does not recommend tonsillectomy? I couldnt find Swedos trial.

[Guest]

Good luck for recovery.

I'm still in recovery. So far, haven't noticed any difference for myself but I have been seen a REALLY long time and they should have been removed when I was a child.............

 

My ENT is really good. He told me that his adult patients feel better overall, have more energy. And quote, "a lot of my adult patients who had a history of tonsil and strep problems as a child and still have infected tonsils, have major autoimmune problems now". I think he was describing me to a tee.

 

Best of luck in recovery!!!! Soup, ice-cream, coconut water (for electrolytes), and gargling salty water have been a good friend. Make sure he's taking a c-diff preventative though.

[Mayzoo]

These articles seem to recommend T & A as a possible treatment for PANDAS:

 

http://www.ncbi.nlm.nih.gov/pubmed/21466900

 

http://www.ncbi.nlm.nih.gov/pubmed/18817720

 

http://www.enttoday.org/details/article/588765/The_Great_Unknowns_Panel_discusses_research_on_pediatric_tonsillitis_ottitis_sin.html

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

These do not:

 

http://www.ncbi.nlm.nih.gov/pubmed/23518825

 

 

What I gathered is that tonsillectomy is a major treatment option after PANDAS has presented. Tonsillectomy is not a consideration as a preventative for PANDAS nor does a past T & A rule out the dx of PANDAS. My guess is NIMH does not want folks just willy-nilly removing tonsils again for no reason, so they are trying to be conservative in recommending it.

Edited November 2, 2013 by Mayzoo

[JoyBop]

Thanks Mayzoo. I was hoping to find the research that Swedo had done through the NIH. There are very few valid studies showing the effects of tonsillectomy on children experiencing PANDAS flares at the time of surgery. There are a few documented individual cases but that will hardly help our cause. I understand why the NIH would not make a blanket statement and suggest that anyone with the diagnosis should rush right into surgery, but I was hoping to find some really legitimate reason why they outright discourage it.

 

Lucky for me, both my PANDAS kids had moderate to severe sleep apnea and that was the reason we did the surgery. If nothing else, it should help keep strep infections down (or at least for the first two years according to our ID dr.) and help with some behavioral issues thanks to a better nights sleep.

 

Ophelia, I understand this surgery is the worst for adults. I hope you are feeling better and starting to see some positive results!

[Mayzoo]

Internationally a T and A appears to be highly advisable once a PANDAS dx is reached. However, they do go out of their way to state a T and A will not prevent a future dx of PANDAS in a child who is not already symptomatic for PANDAS. In the US, the insurance companies do not want to go back when T & As were common since they do not wish to pay for them. So far as I can tell, it is all about politics and money rather than patient care. The NIH site states they do not recommend it since so few kids are helped by them .

 

"Tonsillectomy has also been considered as a treatment for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS), but only a few cases in which tonsillectomy helped are documented in the literature as case reports, said David E. Tunkel, MD, director of pediatric otolaryngology at Johns Hopkins University in Baltimore."

 

http://www.enttoday.org/details/article/588765/The_Great_Unknowns_Panel_discusses_research_on_pediatric_tonsillitis_ottitis_sin.html

 

"Since the international recommendation for the treatment of P.A.N.D.A.S. is tonsillectomy it should come as no shock to anyone that the insurance industry in the United States is not eager to have a mandate imposed that would return us to a time when tonsillectomy became rather routine as opposed to exceptional."

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

[JoyBop]

I've read all of that and I totally agree, however, the insurance companies don't have any control of what care gets mandated. They are obligated to pay for any treatment that has been proven to be effective for a defined and medically accepted illness. They are not obligated in any way to pay for any experimental or unproven treatments. But what hurts us all the most is that PANDAS isnt even yet a legitimate diagnosis! We have a LONG way to go. I am hopeful that if Swedos study hits a homer, we should see coverage approximately a year later.

 

I have Harvard Pilgrim and today I looked up their IVIG coverage policy. There are pages of specific diagnosis they cover but at the bottom of the three page document it states outright that under no circumstances will they pay for IVIG for PANS or PANDAS. My heart sunk!

 

But don't be fooled into thinking that insurance companies are in control here. Sure, they will dodge the bullet if they can, but they have responsibilities that they are legally held to. ITs up to our medical community to come to terms with and agree upon PANS and PANDAS as an illness and make it an official diagnosis. Scientists must first understand what it is and what can safely treat it before we can see coverage. No one (doctors, insurance companies, patients, or family members) should ever want to rush into major surgery without really understanding the risks and knowing that the benefits will far outweigh them. Surgery should always be a last resort, but insurance companies are legally bound to providing necessary and proven treatments.

 

I cant wait to hear Dr. Swedo speak next week at the PANDAS conference. Im hoping for a sneak peak at her initial results, but Im sure Im being overly optimistic.

[Mayzoo]

Insurance companies spend millions upon millions of dollars lobbying the government in regards to coverage. I do not honestly want to know to what degree they control what is covered as it would likely infuriate me. We have BCBS and they alone spent almost 10 million dollars lobbying with the government this year and this has been going on for decades. In 2006 BCBS spent over 8 million prior to Obama even taking office, so it has little to do with Obamacare. Insurance corruption is one of my pet peeves I no longer really have the time for.

 

Our insurance company does not cover office visits or most labs if that office visit/labs is related to autism (among other dxs). Heck, we pay them almost 400.00 a month to cover only kiddo and she has no vision or dental either . Our immuno incorrectly placed the dx as autism for the first two office visits we had and several of her lab work. We never even discussed autism during the visit. I am fighting with them to get them to cover the office visit that were correctly recoded and then denied again. They want proof now that she needed to be seen by a doctor for starters and then proof that the visit was not pertaining to autism. They may cover them eventually, but I am not holding my breath since this has drug on since April already. Point being, an insurance company covers only what is outlined in the policy, and much of what they do not cover are medically proven dxs, treatments or meds. We are responsible to read our policies and if we do not like what they dictate, then we are to find another company that is more to our liking. In my families case, kiddo is only eligible for one policy based on her dxs. If we do not like what she currently has our only other choice is no coverage at all. In January all the pre-existing stuff changes, and the coverage kiddo has will be terminated since it is only for those otherwise uninsurable due to pre-existing.

 

I worked in pharmacy for 20 years and watched insurance companies buying out drug companies, then stacking their formularies in favor of the companies they themselves owned rather than based on safe, common, or generically available medications. I really do not want to know the complete picture of corruption in the medical and insurance industries in the US. I do not have the energy or time to become that enraged any more.

[JoyBop]

MAyzoo, I totally hear what you are saying. My whole family works in the medical field and I work directly with insurance and billing so I do know what you are talking about and it is the bane of our existence. But a lot of change has already begun and insurance companies are slowly loosing their power. We as patients can't change the formularies and we do have limitations and have to use the preferred drugs, doctors and hospitals, or pay dearly. But insurance companies are becoming more and more mandated on what they have to provide and we have only seen the beginning. Perhaps I'm an optimist here but I do believe insurance companies are more liable than most people realize to provide adequate coverage based on new state and federal laws. In our state of MA, if I appeal a denial of coverage, I can file a complaint with the state against them. If they have refused us any option of reasonable care for a clearly diagnosed illness with a proven treatment, they are on the hook. ITs no longer a question of what they want to cover, its a matter of clearly defined state and federal laws.

 

As far as Autism coverage, we have come a long way, at least in 37 or more states. Here is an article that is at least a year old but shows what states have been mandated to provide. http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx As for the rest of the states, well shame on them, and they won't get away with it much longer!

 

But I think my whole point I'm trying to make is that until our medical community comes together on PANDAS/PANS (what it is, how to diagnose it, and how to treat it) we are still years away from coverage. It took 40 years for the medical community to come to terms with Autism. I think that just goes to prove that there is a stigma in this country in regards to mental health issues. I see that changing as well. (Theres that optimism again!)

 

Thanks again Mayzoo for the articles. I hope I haven't come off as defensive. Im just on edge and have way to much time on my hands, shut-in with my recovering child for 10 days.

[Mayzoo]

No, you do not come off as defensive . I probably come off as aggressive, sorry. Our insurance pays for autism coverage up to the age of 10 and my kiddo is 11. I guess they figure it goes away or should be "handled" by then...LOL. Traditional medicine has never helped her autism anyhoo, so no sweat off my back there except the doc coding her stuff wrong.

 

Maybe insurance will get better, maybe it will get worse. Either way, it is out of our hands.

 

I spend tons more time on the net when kiddo is down and out. It is an outlet that helps me keep my sanity. She is back to doing pretty well right now :D, but it is raining outside, so movies, nintendo, a few games, school work and net around here today.

[JoyBop]

You didnt come off aggressive at all. I just wanted to be extra mindful of my tone as today was a very difficult day. I cant get him to drink at all and he has been lethargic anddehydrated. He did so well for the first few days but things have gotten far more painful. He went from eating a grilled cheese sandwich and gladly taking as many popsicles and fluids as I offered down to nothing. I fear he may end up in the ER tonight for IV fluids. DH will give it a shot tonight taking him up wwhen he gets home.

 

And you are 100% right. I think insurance WILL get worse before it gets better. But I am optimistic that it will get better in the long run. And PANDAS will eventually get good treatment coverage. Im just thankful we live in a day and age where at least doctors know what this is and how to treat it as opposed to how things would have been 30 plus years ago when your child was just labeled bad, dumb, slow, crazy, strange,ect. And Im especially thankful for the technology that allows us to be educated on these matters and find places like this for support.

 

What a sin that they cut kids off at age 11! I think that all those in Congress and their families should get the exact same health plans that we have and see how fast things change!

[Broo100]

My two cents on T&A. My ds had a partial tonsillectomy when he was 3 because of drooling problems. He managed to not have strep, or Pandas, until age 10. Then all of a sudden he developed pandas very quickly and intensely. Turns out he had mycoplasma and strep. My feeling is that had I not taken those T&A out he would have develop pandas much much earlier than he did. While he can still get strep the odds are much lower than had he not had them out. Meanwhile, his 2 sisters were chronic strep carriers all of last year without pandas symptoms. However the ENT was emphatic that they get a total (not partial) T&A as he wanted to minimize the exposure risk to the brother as well as have the girls end up developing pandas. So yes. T&A is a very effective tool against this fight

[JoyBop]

You are so lucky to have a doctor that was that compassionate and saavy. The only way we got it covered is because the sleep study proved mid to severe sleep apnea. Otherwise we would've had to prove they have 7 or more strep infections over a one year period. Of course, I wasn't going to keep him off antibiotics to prove this and cultures can give a false negative when a child is on abx. So that would have been fruitless. They won't accept the titres since they can stay elevated for up to a whole year after an infection. Broo did they remove the rest if his t and a after pandas?

[stacey]

My son has been showing symptoms of pandas since the age of four(tics, separation anxiety, short term memory issues, processing disorder, OCD). He has extremely high strep titers and continues to swab negative. We are considering a tonsillectomy. Antibiotics no longer effective. I have read so much conflicting evidence that it works. I am new to this forum. Any advice?

[JoyBop]

There hasn't really been any official studies on if a tonsillectomy helps a child that already has pandas. The study done has shown that it won't prevent a child from getting pandas. Our pandas ID dr said studies show there is a decline in post t and a strep infections but by the end if a four year period there are as many strep infection as before surgery. Of course for me, I was willing to take the reduction for four years knowing he would eventually outgrow this condition.

 

My dd was cured completely after t and a but only for 6 weeks and then she flared. Now she does have little flares here and there lasting from a few hours to 10 days, but in between she is her 100% self.

 

DS had the surgery and flared terribly for 5 weeks! But I must say now he is doing amazing ly well but still has awful adhd and mild icd, anxiety and tics.

 

We did both surgeries for sleep apnea. It's not a given that it will help but many feel that it has helped. I am definitely on that team!