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To those w/ "limited financial resources"....


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This is a thread I thought about writing for awhile. This thread is for those of you on the forum who have a PANDAS/PITAND child but simply do not have the financial resources to travel or dish out upfront costs of some specialists and other things mentioned on here.

 

Often on here people give the perfect advice of skipping local doctors and going straight to a PANDAS specialist. Even though I agree this is the ideal thing to do, the reality is some people simply cannot. I want all of you who are in that situation to know that YOU ARE NOT A BAD PARENT because you cannot save up for that appointment. Some may not fully understand what it is like to truly scrape by and not be able to save up even for an appointment that your child may need or not have anyone to even ask for help or a loan. No one will ever judge you if you are in that predicament. I know it does not mean you love your child any less.

 

I know how hard it is to watch your child suffer and to think that it may be due to money that they may suffer longer than needed. That you read about tests to be done, supplements to buy, prescriptions to pay for and you just cannot see where the money will come from.

 

In regards to doctors, even if you cannot travel to see a specialist, do not feel you are not worthy of help. Still seek out local help. If your pediatrician is not helping, make an appointment with a local immunologist, rheumatologist, ENT. You can try to see one in your county. It does not have to be THE county hospital, but at least one you live in since you need to live in the same county as the hospital to qualify for financial assistance. By doing this, you can apply for financial aid to help with medical costs. You can apply for financial aid even if you have insurance. Also, you should not have to pay for the visit (except for any co-payments) at the time of the visit.

 

Try to see a different pediatrician. You can see a new pediatrician without transferring all your files if you are not going to get vaccinations. Files do not have to transferred for an initial visit. Also, use the phone! I ruled out many offices simply by how the phone call went.

 

Cunningham test...Even though, to my knowledge, they are not currently sending out new kits, I want to touch base on this. I know this test is just impossible for some to run due to cost. Again, don’t feel your child will not get help if it is not done. Yes, the ideal is to get it done, but if it’s the matter of choosing between the test and feeding the kids for a few weeks…well, you get the idea.

 

Supplements...So many get listed on here but it’s discouraging when you go to the store and see the price of some of these. Your child could benefit from at least a multivitamin, Omega 3’s and a probiotic. A good website to price compare is www.vitacost.com. I was pleasantly surprised by their prices.

 

Also, rediscover your local library. Yes, that sentence sounds corny, but it really is a great resource. Most libraries have it that you can put books on hold and be contacted when they arrive, should they be out of a copy when you want it. Here’s a list of books to help with OCD that was once posted by Meg’s Mom http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&fromsearch=1entry52242

 

I do not know of any organizations that could help with medical bills. If anyone has any info on such a thing, please post. That could be very helpful for some parents.

 

Please feel free to post any other suggestions!

Edited by Vickie
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Thanks, Vickie! I don't have further suggestions, but do wish there was some fund that could help those in need. We are still paying for last January's trip to see Dr.L. We were lucky to have the space on our credit cards for that, and did get insurance reimbursement for the actual dr. visit. But w/ airfare, hotel, car rental...very pricey. And the thing is, I don't even think it was really necessary. Her assessment was, basically, "Treat her for the immune deficiency." Further, we could not afford any follow up visits.

 

My saving blessing is that I have a local pediatrician who will go to bat for us w/ specialists. Even he has only been able to enlist one specialist for help- our immunologist.

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And don't forget that THROAT cultures are covered by insurance (do the whole family).

 

Also, Ibuprofen (cheap cheap cheap and OTC) can give symptomatic relief and if your child "responds" to Ibuprofen, that is a clue that you are likely dealing with PANDAS. You don't want to give full-dose 3-4x long term...but for a few days (esp. to get you over rough spots or see if it will help) it should be fine (give with food). Long term, our immunologist felt 1x daily was safe.

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Yes! Throat cultures are very important. If you're already at the office, it's only like 15 more dollars to get the culture done (I read all bills completely since I was once charged wrong)....so worth it! With my insurance, I do pay all that stuff myself until I reach my high deductible, but if I'm already paying over $100 for a dr appt, I get the culture too. For a follow up strep test, you could ask if they offer nurse appts...those are cheaper and you're in and out faster.

 

Investing in a box of rapid tests at home is a good idea too. For those stressful weekends when you question strep but don't want to go the office or ER. The rapids aren't that expensive either.

 

And don't forget that THROAT cultures are covered by insurance (do the whole family).

 

Also, Ibuprofen (cheap cheap cheap and OTC) can give symptomatic relief and if your child "responds" to Ibuprofen, that is a clue that you are likely dealing with PANDAS. You don't want to give full-dose 3-4x long term...but for a few days (esp. to get you over rough spots or see if it will help) it should be fine (give with food). Long term, our immunologist felt 1x daily was safe.

Edited by Vickie
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The financial burden of PANDAS is such a tender topic to our family. We have discussed this at length in our home. Thank you for sharing your thoughts, Vickie, and spurring on further discussion among us. The issues you brought up weigh heavily on us all, I am sure. Food or function is not a choice families should have to face.

Mary

from Michigan

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Thank you! I cannot tell you how sorry I am that I "wasted" so much money on seeking treatment for myself for chiari the past few years. That is a dream of the past as I move toward throwing all available money at my son. It's very similar in the expenses and current medical thinking as PANDAS. My father even gives us money periodically and it always goes towards whatever I can think of that would help my son.

 

And I admittedly have a good job - in social work for people with disabilities no less - and good health insurance. I cannot imagine the difficulties that others face. Actually I can and I have all new perspective as I work all day trying to find help for people and then continue working for my own child the rest of the time.

 

If anyone has a child with any sort of developmental diagnosis as well and lives in NJ - I may be able to find a creative resource for you so feel free to ask! Sadly I live in PA and it's a whole different world there.

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Thanks, Vickie. So well said, and so timely, too. I, too, am fortunate to have health insurance through my employer, but our rates are going up 41% as of January 1, and it seems as though every day there's some new "wrinkle" in what's covered, in what manner, and to what degree. No offense to anyone here who may be in the industry, but it's really hard not to detest the insurance companies sometimes! :angry:

 

That being said, we all want to focus on the kids, and I think we would all give the shirts off our backs to help our own. And many people here have been invaluable, not necessarily financially but in so many other ways, helping kids who are NOT their own. Although, if you adhere to the old adage "Time is money," then every one here has been very generous in a financial sense, as well! Thank you to all!

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Good post Vickie. We have not went for the Big Guns but I can relate to what a financial impact this can have on a family.I was fortunate to have the means to pay for seeking help but in all honesty this forum has been the most healing. It is nice to touch base with a Pandas Dr. and talk with someone who truly understands but in the end you come home and feel some sense of loss because you realize that these specialists are not as accessible as your regular Dr. and much further away. The information provided on this forum is priceless!!!

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I have learned of some great doctors locally, by calling our local autism society and asking who they recommend for a pediatrician. Also, I have a friend who applied for disability ( think that is right term - maybe through Medicare? Will check) for her high functioning son w aspergers. This then provided him with health insurance, which the family did not have.

 

Also she found some local churches had funds to help kids with specific needs like traveling to specialists. It might be worth calling around.

 

Great post Vicki, this disease is so draining on so many fronts.

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Awesome post! Thanks Vickie for bringing this up. I know some many of us are in this situation, and it gets even more stressful when you have more than one child affected...

We are now pursuing Lyme treatment for both PANDAS ds13 and "almost-positive-it's-PANDAS-and-Lyme" dd10. I was very blunt with the LLMD in that our resources were very limited, and he is totally understanding. He said the same thing you are saying: good multivitamin, Omega-3s, and probiotics.

He is also treating them based on symptoms without going through the expense of Igenex testing.

 

For those of you out there who are wondering if Lyme or co-infections are implicated, this resource may be of help. I have not pursued this yet, but might in the future...

 

 

LymeTAP offers financial assistance for Lyme disease testing

A nationwide program to help financially strapped patients pay for Lyme disease diagnostic tests will start accepting applications November 1.

 

The Lyme Testing Access Program (LymeTAP) will be administered through the Rotary Club of Ferndale Foundation, in coordination with the Humboldt Lyme Awareness Group (HLAG). It is made possible by a generous grant from IGeneX Reference Laboratory of Palo Alto. While all three organizations are based in California, people throughout the United States may apply.

 

 

“Many patients can’t afford the cost of basic testing,” said LymeTAP coordinator Sylviane Schwartz, of HLAG. “This poses a huge financial burden to patients, who must pay out-of-pocket to get properly diagnosed.”

LymeTAP permits testing at any lab of the patient’s choice provided it is certified by Medicare and CLIA (a government designation that sets standards for laboratory testing). Applicants for assistance must provide evidence of financial need. Their treating physician must also sign the application.

Initial funding for LymeTAP comes from a $100,000 grant from IGeneX Labs. The program gives priority to children, but adults may also apply.

Lyme disease, a bacterial infection spread by ticks, is the fastest growing vector-borne disease in the United States. It has been reported in all 50 states and many foreign countries. Schwartz said it can be a complex illness to diagnose clinically because it can mimic other conditions such as fibromyalgia, chronic fatigue, and multiple sclerosis.

“Delays in testing often lead to delays in treatment, which can make the disease harder to treat. LymeTAP will address one cause of testing delay, inability to pay,” Schwartz said. “We hope the program will allow more people to be tested and treated early.”

IGeneX, based in Palo Alto, is a reference lab certified by Medicare and CLIA that specializes in clinical and research testing for Lyme disease and other tickborne infections.

Humboldt Lyme Awareness Group is an educational organization promoting Lyme and tickborne disease awareness programs in northern California. HLAG volunteers will coordinate the LymeTAP program in conjunction with the Rotary Club of Ferndale Foundation.

The Rotary Club of Ferndale Foundation is a 501 c 3 charitable organization set up to support a variety of community needs. Rotary’s motto is “service above self.” According to a spokesman, “The LymeTAP program is a perfect example of this motto in action.”

To find out more about LymeTAP and to download an application form, visit www.lymetap.org.

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Ok, I found this too...

 

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=392:what-is-lymeaid-4-kids&catid=105:lyme-aid-4-kids&Itemid=483

 

It's called LymeAid4 kids, and it provides up to $1000 towards dianosis and treatment. I know it's not PANDAS specific, but it may help some here.

 

I also found this website, which may be helpful for those who do not have prescription drug coverage. I have not used this website myself, but it looks like they offer discount plans as well as links to other public and private institutions who offer help.

 

http://www.needymeds.org/

 

And I second the motion for Vitacost. They are usually the best price and their shipping is very reasonable. I always search for coupon codes before I check out and there is always some kind of promotion going on to save a few more dollars :)

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Another thing people might consider is using the medical expenses as a tax deduction. I don't know what the cutoff is for claiming medical expenses, but it is worth talking to a tax preparer or accountant to see if you qualify. You can be reimbursed for travel, mileage, hotel stay, and meals away from home when seeking medical care. You must be very meticulous with your receipts and your accounting. Now is the time to be gathering all of your receipts and facts together in anticipation of tax season.

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Good topic. On a related note, my son was covered Medicaid until he was 6 (I was a single mom working p/t with no benefits and a difficult child who seemed to need extra attention, so I thought this was a clever solution) and TWO WEEKS after I got married and was added to my husband's private health insurance, and we got a new, better pediatrician, new questions were asked and we discovered PANDAS. Coincidence?

 

I never really noticed we were getting sub-par care on Medicaid, but we were. There was HUGE disparities in this country not only in who gets what treatments, but in who gets what diagnoses.

 

Even with private insurance, $ is a huge concern for as it is for so many others obviously. There is no extra money in our budget and no way I could have paid for any of these treatments out of pocket.

 

I have paid for two things: 1) the Cunningham test, which was only $200 at the time and 2) one visit with Dr. L ($800). I feel that from this $1000 investment, my son has gotten PEX and multiple IVIGs. I have probably been pretty pushy at times. I remember on my drive back from Dr. L's I felt like a total failure because I had "only" gotten a script for steroids when I felt in my heart that I needed to push for the bigger treatments, which is what I wound up doing, within weeks.

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