thereishope

I just want to add that I didn't really try a lot of intervention with my son during his 1st and 2nd exacerbations. It wasn't until the tailend of # 3 when I realized the OCD wasn't planning on leaving did I intervene. I agree antibiotics first and most important. Also, if things like ERP didn't work before it doesn't mean they won't work now. I know it wouldn't have been effective in the midst of an exacerbation with my son. And I know if he should get sick again, I will probably be faced with "waiting it out" for awhile. But I know there's things I can eventually do to get him over that hump and help him fully recover. I agree that OCD can become a habit for some if they have the problem long enough. That is what happened with my son. It was residual OCD. And, as already said, it won't work for everyone. It's the same thing with specific antibiotics, steroids, Ibuprofen, etc. But if you do deicde to try it, educate yourself before approaching the child about it. There will be anxiety involved and it won't always be easy. Also, know that you can cutomize it to your family and child. It's a time to be creative and think outside the box.

They probably just gave you the lower dose amox in hopes that you wouldn't realize how low it was and to get you out of the office. Little did they know they had an intelligent fighter on their hands! When are docs gonna learn that we all talk to each other?

Here's a link to her most recent post. You can send her a personal message (to ensure she reads it) and perhaps she can direct you to a doctor. http://www.latitudes.org/forums/index.php?showtopic=6509

Welcome. TN....I want tosay someone is from there. I think TracyRee? If I remember correctly she just found a doctor too. You can also view a doctor list here: http://www.latitudes.org/forums/index.php?showtopic=6428 Have you had him (and others in the family) tested for strep? Is he on any antibiotics right now?

When my 44 pound 6 year old got amoxicillan for a sinus infection, he took 750 mg two times a day. That's a total of 1500mg/day. The 800mg/day your son got does sound low, esp for a 100 pound kid. Also, the amox didn't work for his sinus infection. We had to change it.

My son would have meltdowns and rages.Unfortunately, that is not uncommon. My son had ODD as well. There were times I had to grab him, sit on the floor and bear hig him until it ran its course. I'd just sit there crying, saying over and over " Mommy loves you". He would also get physical with hitting, punch, kicking, pulling at my clothes. Try to find patience. Don't scold or reprimand for it. It really is out of their control. Have you given her some Ibuprofen? If not, give her some and it may ease the symptoms. Hopefully the antibiotics will work soon and you will see some improvement. Stay strong.

In reference to the genetics study Michele refers to, the child needs to be 8 years old. From what I was told, if the child is too young, the parents along with grandparents can supply the samples w/o the child being involved.

Did you ask the ped if she would change it or at least increase for the time being since the sibling has strep? Just continue to keep an eagle's eye on him and start disinfecting the house.

I can't remember. Is your PANDAS son currently on antibiotics?

Well, even though a child has PANDAS, you can get each individual diagnosis. A child during an exacerbation will reach the critera to be diagnosed with clinical OCD, TS, anxiety disorder, etc. Granted, it may not be the "label" you ideally want, but if you get the help you need and not have to necessarily pay for everything, then it's a compromise some may need to take at the moment. I was warned by psychologists when I called around that in his med records they'll say PANDAS but for insurance, they may bill as something else. I don't think it will help at all with IVIG or PEX, but it does help for the therapy aspect that some are seeking.

They now refer to what was once known as mental illness (ex.OCD) to neurobiologic disorders. I think we are slowly making strides in changing the way people see things.

Last year, my son would have been only able to receive 10 sessions with a therapist under our mental health coverage. I'm thinking under this new law they cannot put caps like that on a person. I know in the past some people who have been hopsitalized in the psych floor at a hospital and were eventually discharged too soon because mental health benfits ran out. It was very sad. One of those people was a teen who attempted suicide. They discharged her too soon because of money and she attempted it again w/in a week of being let out. Also, some insurances had mental health under a whole separate umbrella with its own deductible.

MomwithOCDson reminded me that the new law for mental health coverage went into effect Jan 1, 2010. So I thought it woud be a good time to post the original article announcing it. Thanks for the reminder, MomwithOCDson! Bailout Provides More Mental Health Coverage By ROBERT PEAR Published: October 5, 2008 WASHINGTON — More than one-third of all Americans will soon receive better insurance coverage for mental health treatments because of a new law that, for the first time, requires equal coverage of mental and physical illnesses. The requirement, included in the economic bailout bill that President Bush signed on Friday, is the result of 12 years of passionate advocacy by friends and relatives of people with mental illness and addiction disorders. They described the new law as a milestone in the quest for civil rights, an effort to end insurance discrimination and to reduce the stigma of mental illness. Most employers and group health plans provide less coverage for mental health care than for the treatment of physical conditions like cancer, heart disease or broken bones. They will need to adjust their benefits to comply with the new law, which requires equivalence, or parity, in the coverage. For decades, insurers have set higher co-payments and deductibles and stricter limits on treatment for addiction and mental illnesses. By wiping away such restrictions, doctors said, the new law will make it easier for people to obtain treatment for a wide range of conditions, including depression, autism, schizophrenia, eating disorders and alcohol and drug abuse. Frank B. McArdle, a health policy expert at Hewitt Associates, a benefits consulting firm, said the law would force sweeping changes in the workplace. “A large majority of health plans currently have limits on hospital inpatient days and outpatient visits for mental health treatments, but not for other treatments,” Mr. McArdle said. “They will have to change their plan design.” Federal officials said the law would improve coverage for 113 million people, including 82 million in employer-sponsored plans that are not subject to state regulation. The effective date, for most health plans, will be Jan. 1, 2010. The Congressional Budget Office estimates that the new requirement will increase premiums by an average of about two-tenths of 1 percent. Businesses with 50 or fewer employees are exempt. The goal of mental health parity once seemed politically unrealistic but gained widespread support for several reasons: ¶Researchers have found biological causes and effective treatments for numerous mental illnesses. ¶A number of companies now specialize in managing mental health benefits, making the costs to insurers and employers more affordable. The law allows these companies to continue managing benefits. ¶Employers have found that productivity tends to increase after workers are treated for mental illnesses and drug or alcohol dependence. Such treatments can reduce the number of lost work days. ¶The stigma of mental illness may have faded as people see members of the armed forces returning from Iraq and Afghanistan with serious mental problems. ¶Parity has proved workable when tried at the state level and in the health insurance program for federal employees, including members of Congress. Dr. Steven E. Hyman, a former director of the National Institute of Mental Health, said it was impossible to justify insurance discrimination when an overwhelming body of scientific evidence showed that “mental illnesses represent real diseases of the brain.” “Genetic mutations and unlucky combinations of normal genes contribute to the risk of autism and schizophrenia,” Dr. Hyman said. “There is also strong evidence that people with schizophrenia have thinning of the gray matter in parts of the brain that permit us to control our thoughts and behavior.” The drive for mental health parity was led by Senator Pete V. Domenici, Republican of New Mexico, who has a daughter with schizophrenia, and Senator Paul Wellstone, the Minnesota Democrat who was killed in a plane crash in 2002. Mr. Wellstone had a brother with severe mental illness. Prominent members of both parties, including Betty Ford, Rosalynn Carter and Tipper Gore, pleaded with Congress to pass the legislation. Representatives Patrick J. Kennedy, Democrat of Rhode Island, and Jim Ramstad, Republican of Minnesota, led the fight in the House. Mr. Kennedy has been treated for depression and, by his own account, became “the public face of alcoholism and addiction” after a car crash on Capitol Hill in 2006. Mr. Ramstad traces his zeal to the day in 1981 when he woke up in a jail cell in South Dakota after an alcoholic blackout. The Senate passed a mental health parity bill in September 2007. The House passed a different version in March of this year. A breakthrough occurred when sponsors of the House bill agreed to drop a provision that required insurers to cover treatment for any condition listed in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association. Employers objected to such a requirement, saying it would have severely limited their discretion over what benefits to provide. Among the conditions in the manual, critics noted, are caffeine intoxication and sleep disorders resulting from jet lag. Doctors often complain that insurers, especially managed care companies, interfere in their treatment decisions. But doctors and mental health advocates cited the work of such companies in arguing that mental health parity would be affordable, because the benefits could be managed. Pamela B. Greenberg, president of the Association for Behavioral Health and Wellness, a trade group, said providers of mental health care typically drafted a treatment plan for each person. In complex cases, she said, a case manager or care coordinator monitors the patient’s progress. A managed care company can refuse to pay for care, on the grounds that it is not medically necessary or “clinically appropriate.” But under the new law, insurers must disclose their criteria for determining medical necessity, as well as the reason for denying any particular claim for mental health services. Andrew Sperling, a lobbyist at the National Alliance on Mental Illness, an advocacy group, said, “Under the new law, we will probably see more aggressive management of mental health benefits because insurers can no longer impose arbitrary limits.” The law will also encourage insurers to integrate coverage for mental health care with medical and surgical benefits. Under the law, insurers cannot have separate cost-sharing requirements or treatment limits that apply only to mental illness and addiction disorders. The law comes just three months after Congress eliminated discriminatory co-payments in Medicare, the program for people who are 65 and older or disabled. Medicare beneficiaries pay 20 percent of the government-approved amount for most doctors’ services but 50 percent for outpatient mental health services. The co-payment for mental health care will be gradually reduced to 20 percent over six years. The mental health parity law was forged in a highly unusual consensus-building process. For years, mental health advocates had been lobbying on the issue. Insurers and employers, which had resisted earlier versions of the legislation, came to the table in 2004 at the request of Mr. Domenici and Senators Edward M. Kennedy, Democrat of Massachusetts, and Michael B. Enzi, Republican of Wyoming. Each side had, in effect, a veto over the language of any bill. Insurers and employers, seeing broad bipartisan support for the goal in both houses of Congress, decided to work with mental health advocates. Each side gained the other’s trust. “It was an incredible process,” said E. Neil Trautwein, a vice president of the National Retail Federation, a trade group. “We built the bill piece by piece from the ground up. It’s a good harbinger for future efforts on health care reform.”

I forgot about that! That they have to treat mental and health the same starting this year. I had the article saved.... http://www.nytimes.com/2008/10/06/washingt...&ref=health

My husband works for a small company. Our insurance is expensive, but in the long run if someone should get really sick it eventually works to our advantage. We have UHC (United Health Care). The policy we have (and the only one the company offers) is that we pay for everything out of pocket until we reach a $3000 deductible per person for in network. But after that, we are covered 100%. Well checks are always covered 100%. I don't know what the out of network deductible is. One of the things I don't like is my son has a speech disorder and UHC doesn't cover services for speech. Also, with the plan I have, they don't offer much for mental health. So if you want to see a psych for therapy, that may get pricey. From what I understand UHC is one of the insuarnce that may cover IVIG. Not sure on that.

Someone did mention on here once that the fluid in an ear infection could be strep. Is it leaking? If so, I think they said they can test it otherwise the doc can't tell which bacteria caused the ear infection. I believe strep in the gut is diagnosed through a sample of ...oh shoot I can't think of the nice way to put it sine I refer to it as poo poo with my 3 yr old. That "Mommy brain" controls me sometimes. Have him look at the rash on her bottom too. Strep can be on the skin. Finally, don't let them talk you out of swabbing the baby. Sometimes docs pull "babies can't get strep". They can and there are people on this forum that can attest to the fact that they DO get strep.

One piece of advice I want to share is to always have other options in the dresser, including the ones you know he won't wear. Always leave the opportunity there that he may grab one of the "taboo" items. He might surprise you someday. If he does, don't necessarily make a big deal out of it at first. Once I did that, he gets self conscious and ran back in his room to change.

My son only had a 5 day steroid burst and it was beneficial. But I should also add he received rather soon after we found out he had strep again.

Welcome. I have heard others say their PANDAS child had a bad reaction to Singulair. If she is still taking that, I would suggest changing to something else. Take her for a strep test ASAP. If the rapid comes back negative, make sure they culture it. Also try to get something stronger than amoxicillan. Most kids see the most success on Zithromax and Augmentin. My PANDAS son did not have classic strep symtpoms, yet he wil have strep. No sore throat, no fever, nothing. Since then, I've found out none of my kids get symtpoms when they have strep. Also, get everyone else tested too, including adults. Am I correct in thinking she is not on any antibiotic right now? What are her PANDAS symptoms (OCD, tics, other behvaior changes)? Please take her for a strep test in the morning.

Here's the link to the "gifted" thread. http://www.latitudes.org/forums/index.php?...ic=5672&hl=

My son has a very good memory. I think I have a rather good one and he's even better. You weren't on this site when we did a thread on gifted kids. I'll find it and post it. Memory is discussed on it.

Hi, Michele. Happy Birthday to Andrew! Did you ask the doctor for anything stronger than Amoxicillan? Is the 500 mg his entire dosing for he day? Maybe it's the "birthday curse" some of us have had and he will be better tomorow. I know it's wishful thinking, but one can hope. You deserve a break already!

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In addition to Keith and Elizabeth, I know 2 other people in which staph was the original trigger.

I had a good experience with steroids. We did not have tics either. Steroids are often used with other autoimmune disorders as well. I believe to take down the inflammation. I wondered if the steroid would also suppress the immune system and slow dow the production of the bad strep antibodies. If my son should get sick again, I plan on begging for a steroid very early on.