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I took my 18yo ds to a neurologist for the first time today. Nice dr, seemed fairly positive on natural treatments, but totally mainstream mindset.

 

My ds has Tourette's, but all the tics are OCD in nature - they are set off by a particular location, a noise, a person, etc. It has gotten really bad such that it takes him 20 minutes to put on his socks & shoes - even worse, he struggles to make it to the bathroom on time cuz he has to go thru so many things to get there & his sleep is suffering because he has to go thru so much to get into bed (which is a vicious cycle because being tired makes his problems even worse). We homeschool & he is ~2 yrs behind on his schooling. And if someone makes a noise during an episode, even a sigh or clearing their throat, he does this screaming/bellowing thing that we're afraid is going to freak out our neighbors. His quality of life sucks at this point - and ours is suffering, too.

 

The dr. wants to put him on Zoloft to increase his serotonin which he believes will help reduce the OCD side of the tics. I seem to recall reading that using such drugs over the long term actually leads to even less serotonin so that the problem is actually made worse over time. I'm wondering if we can improve his serotonin naturally. Or should we try the Rx as a crutch in hopes of reducing the tics to the point that he can function enough to take better care of his health needs & then hopefully wean him off over time? Or is that just wishful thinking?

 

I strongly suspect my ds's problems are autoimmune, but have no clue how to find out without breaking the bank. We live near Houston, TX. I have received lots of wonderful advice, but we can't afford to do a whole lot of tests or travel cross country. We have a dr. who I don't have a whole lot of confidence in on her own, but I think would be open to doing phone consults but I'm not sure how well that would work either. I would love to hear your opinions on where to go from here!

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Obviously, tests make it much easier to make a medical treatment plan. But since that sounds like it's not in the budget, as a quick relief you can look into inositol as a natural SSRI.

 

a. http://en.wikipedia.org/wiki/Inositol

b. http://www.nutritionj.com/content/7/1/2

c. http://www.naturaladd.com/resources/articles/natural.html

d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/

f. http://www.ihealthtree.com/inositol-powder-8-oz-source-naturals.html

 

It helped us through the worst of times, but I would look into CBT and ERP as a longer term, more permanent solution when you finally get to a point where simply functioning is less of an ordeal.

Best of luck!

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Do you have a hospital in your county? You could have some tests run through them (except the Cunningham test since that is by sending out for a kit and paying upfront) and then apply for financial aid. You can even apply for it prior to the appt so you know how much will be covered. All hospitals offer this, not only the inner city ones. The hitch is you have to live in the same county as the hospital you go to. I have insurance, but it is awful with sky high deductibles. I've applied for financial aid before even with having insurance.

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Grace --

 

So sorry for what you and your son are going through. My heart breaks when I read your post because some of it is very familiar, especially in terms of how much time is consumed by your son's behaviors, and how miserable it seems to be making him and you. It sounds as though he truly isn't functional, and I personally think that this situation might warrant a more dramatic response on your part.

 

How long has your son had these behaviors? I ask because our DS13 has had his OCD behaviors since at least 6, and we believe likely as early as 3, though we didn't have a diagnosis that early. And even though we have found a strep connection and PANDAS now, 7 years after his OCD diagnosis, and we've been treating the auto-immune with antibiotics, the abx alone has not been able to bring him all the way back to us; it made tremendous impact in the beginning, and though its support is still palpable, we've had to explore other options for recovery, too. While I know many would say that's an argument, perhaps, for IVIG, we feel that all those years of OCD have caused his brain to make some changes on its own and we need to approach things behaviorally as well as immune-wise to bring him back.

 

I don't know about giving someone an SSRI, natural (inositol) or otherwise, inhibiting their ability to produce it on their own. I have heard the same argument, but I've not seen any research to back it up. And at your son's current age and functionality, is that a primary concern? I can only speak for our family, and our answer is "no." While our DS is not touretic, his OCD was dramatic enough to truly impact his functionality, both inside the home and outside of it. As I said before, the abx helped tremendously, especially at first, but that impactfulness waned over time, despite supporting him, as well, with probiotics, anti-inflammatories, etc.

 

We've taken DS to cognitive behavioral therapy (CBT) since he was 6 for the OCD, and last fall we moved into a more intensive exposure response prevention (ERP) therapy program, which has also helped him tremendously. I know therapy options can be slim and the chore of finding an appropriate therapist . . . especially one who doesn't cost an arm and a leg and who's good . . . can be daunting. Like you, we live in a major metropolitan area and still our choices were slim. But Vickie has a good suggestion: a local hospital might not only be a source for some immune testing, but its psychiatric department may be able to help you find a good ERP therapist.

 

We've tried many SSRI's. For more than 4 years, our DS took a low dose of Lexapro and it was beneficial to him with respect to the OCD. When he had his greatest exacerbation/wax last summer, the psych moved him to Luvox, but he kept upping the dose when DS was not responsive. Big mistake. We found that when we lowered the dose, DS actually did better behaviorally. So that would be my first advice: go very low on any SSRI dose and give it adequate time to kick in (it can take up to 6 weeks before you see its full efficacy) before you allow the dose to be moved up.

 

And finally, today our DS is on a low dose of Zoloft, and he's doing the best he's done in over a year. After sitting in on a panel lecture called "OCD and Comorbid Disorders -- Tics, ADD, ADHD and Autism-Spectrum Disorders" at the International Obsessive Compulsive Disorder Foundation conference this summer, I learned that 1) two studies had been done with comorbid kids, ERP and Zoloft wherein the results were strongly positive, and 2) that low-dosing SSRI's was not just recommended for PANDAS kids but also kids with comorbid conditions (while our DS does not have tics, he does have some ADHD and high-functioning autism-type behaviors along with the OCD).

 

I wish the best for you and your DS. I know it's exhausting and demoralizing, those bad days, but don't give up. You can and will find some help that has a positive impact!

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Thank you for the replies! I looked it up & there is a place in Houston that offers CBT & ERP. Don't know if it is any good - or covered by our insurance - but I will look into it.

 

We're going to try natural supps, & then if we see no improvement, give in & try the Zoloft.

 

 

I finally went ahead & emailed Dr. K. To be honest, despite what you all had told me, I was skeptical that I would hear back from him. I heard back from him less than 2 hrs later! :o

 

Based on what I told him, he said that it was worth pursuing the possibility of a PANDAS diagnosis -- but unfortunately, he does not know anyone near by us that he can recommend.

 

My DH said that he believes we can handle consulting a dr in Dallas or nearby Louisiana, but is worried about what kind of $'s we are looking at. Can anyone give me a real general ballpark figure for initial consultation & labs? $5K would be difficult but do-able; $10K or more would probably be impossible. Is insurance likely to be of any help? Esp. if we have to go out of state? (We have United Healthcare)

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Thank you for the replies! I looked it up & there is a place in Houston that offers CBT & ERP. Don't know if it is any good - or covered by our insurance - but I will look into it.

 

We're going to try natural supps, & then if we see no improvement, give in & try the Zoloft.

 

 

I finally went ahead & emailed Dr. K. To be honest, despite what you all had told me, I was skeptical that I would hear back from him. I heard back from him less than 2 hrs later! :o

 

Based on what I told him, he said that it was worth pursuing the possibility of a PANDAS diagnosis -- but unfortunately, he does not know anyone near by us that he can recommend.

 

My DH said that he believes we can handle consulting a dr in Dallas or nearby Louisiana, but is worried about what kind of $'s we are looking at. Can anyone give me a real general ballpark figure for initial consultation & labs? $5K would be difficult but do-able; $10K or more would probably be impossible. Is insurance likely to be of any help? Esp. if we have to go out of state? (We have United Healthcare)

Look up doctors ou want to see on myuhc.com. You are covered for any doctor in any state who is in-network. We live in AZ, have UHC and were able to get preapproved to see Dr. Latimer in Maryland w/ just a $35 copay Even though she is out of network (she took no insurance at that time) we were able to get it approved because we were referred by a local rheumatologist who was "not comfortable" diagnosing or treating my daughter. The travel was the most expensive part and we are still paying for that. Hopefully, somebody will help you find somebody a bit closer.

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Grace

 

There is a Immunologist that we use here in Plano (DFW area) that is now doing IVIG and he only charges for the immunogobulin. He does not have a charge for himself or his nurse, since he does it in the office.

 

There is also another doctor in Houston-Dr. Jancovich who is located in the Medical Center, possibly Baylor, not for sure, he may be able to help you.

 

I will pm you with more info on the doc in DFW area.

 

Linda

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My dd gets ivig from an immunologist and it is fully covered by insurance. UHC pays for coverage. Initial consult with doc should also be covered. IVIG can run anywhere from 5 to 10 thousand, but immunologist should be able get it from insurance. IVIG helped my dd's ocd a lot.

 

Thank you for the replies! I looked it up & there is a place in Houston that offers CBT & ERP. Don't know if it is any good - or covered by our insurance - but I will look into it.

 

We're going to try natural supps, & then if we see no improvement, give in & try the Zoloft.

 

 

I finally went ahead & emailed Dr. K. To be honest, despite what you all had told me, I was skeptical that I would hear back from him. I heard back from him less than 2 hrs later! :o

 

Based on what I told him, he said that it was worth pursuing the possibility of a PANDAS diagnosis -- but unfortunately, he does not know anyone near by us that he can recommend.

 

My DH said that he believes we can handle consulting a dr in Dallas or nearby Louisiana, but is worried about what kind of $'s we are looking at. Can anyone give me a real general ballpark figure for initial consultation & labs? $5K would be difficult but do-able; $10K or more would probably be impossible. Is insurance likely to be of any help? Esp. if we have to go out of state? (We have United Healthcare)

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We are looking at Dr. Jane El-Dahr over in New Orleans, Louisiana. She is on our United Healthcare plan AND she has experience with PANDAS patients. She's even listed as one of the authors on an IVIG study with Bradstreet & Singh! - http://www.icdrc.org/documents/High%20Dose%20IVIG%20Bradstreet.pdf

 

Do we need to try to find a doctor who will refer us to her to get coverage for going out of state or does it matter?

Edited by GraceUnderPressure
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I'm really glad that you are pursuing this with a doctor who is knowledgeable about PANDAS.

 

My husband takes L-tryptophan almost every evening before bed...it has helped him a lot. And he didn't need to go back on the psych drugs when his panic attacks started up again.

 

Try to take it about an hour away from protein, if you must eat - make it a carb. Also, your body won't do the proper conversion from L-tryptophan to serotonin and melatonin if you don't have vitamin B6 in the form of P-5-P. Most multi-vitamins only have B6 in the form of Pyridoxine Hcl. So, you usually need to take this one separately...my husband takes it in the morning with his multivitamin.

 

He actually follows the regimen spelled out in the following e-book (it is a free download):

 

http://www.thewayup.com/

 

Please note that this author recommends taking L-Tyrosine too, and some people with TS don't do well with it -- and some other amino acids -- the folks on the TS board know a lot more about it than I do...my husband feels the whole program has been beneficial to him.

 

There are other serotonin supplements. 5HTP is an intermediate substance converted from L-tryptophan, then it gets converted to serotonin.

Read up on both, but only pick one...I don't think you can mix them. Definitely do not take a serotonin supplement at the same time as an SSRI

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We are looking at Dr. Jane El-Dahr over in New Orleans, Louisiana. She is on our United Healthcare plan AND she has experience with PANDAS patients. She's even listed as one of the authors on an IVIG study with Bradstreet & Singh! - http://www.icdrc.org/documents/High%20Dose%20IVIG%20Bradstreet.pdf

 

Do we need to try to find a doctor who will refer us to her to get coverage for going out of state or does it matter?

I was told when I was looking at going to Dr. Latimer, that we would be covered for any in network doctor, regardless of state. But, you can always call to make sure!

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I just bought some inositol powder at the store, along with some P5P. Should I hold off on the 5-HTP or Tryptophan until we have him on a steady dose of the inositol? Or should I have go with 5-HTP first?

 

Off to check out your link - thank you!...

 

do be very careful about mixing supps that boost serotonin and never ever give them with serotonin elevating meds!

Serotonin spiking is a dangerous condition

 

Inositol is a gentle way to start elevating serotonin so always a good place to start with young kids especially. often nothing else is needed. It is a B vitamin and usually tolerated well, although at very high doses it seems to make some people very edgy.

 

5HTP was a life saver for my son at one time, but he cannot tolerate it now. I have heard from many people that now that tryptophan is again available in the USA, it is a better choice than 5HTP. But do remember both are powerful serotonin boosters and so need to be used with caution. Always start at lowest dose and then gradually work up if needed

 

I posted on the TS board about the tremendous benefit my son is having from drinking lemon balm tea (elevates serotonin) and the aromatherapy of jasmine oil. recent studies show these to often work much better than SSRIs

http://www.latitudes...?showtopic=9567

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Graceunderpressure--I would try to see a doctors that has had experience treating Pandas, to check if this might be the case--There is a post, at the top of the Pandas forum page, under "Helpful Threads" where parents have listed doctors seen who were helpful. I think that is really important in treating correctly possible Pandas issues--

 

 

(Chemar, I have to ask--what type of lemon-balm tea?

:) Jasmine oil--great suggestions!)

Edited by T.Mom
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We have been to many many doctors including a week stay in Texas Childrens in Houston (That being a huge waste of money and time). No one has helped us like Dr Jane El-Dahr at Tulane. She not only will treat the child she will help fight the insurance company also-- This is actually how we got to her. DD11 needed IVIG or PEX and insurance refused to pay. My daughter got better before the approval but she was still going to work on it. She has studied PANDAS and has conferenced with Dr Swedo. Stated all the test and treatments talked by parents here. She insisted on taking DD tonsils out when ASO continued to rise even though no positive swab for strept throat--When tonsils were removed pathology showed much evidence of long term strept. Now we are waiting 6 weeks to repeat ASO and Anti-Dnaise while on antibiotics. She and her staff are awesome.

 

Hope this helps feel free to PM me if I can give you other info. I really don't think you will go wrong with her. They will help you up front with insurance and financial stuff.

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