DAN doctos and OCD

[Chemar]

Hi Caz

 

we had my son's testing done(2001) at the Shands Clinic, where Dr Tanya Murphy is one of the physicians at the forefront of PANDAS research. I must confess I dont recall exactly what tests they ran as all came back negative for him, but I do recall that they drew blood and explained that they were going to be testing for evidence of all and any strep activity in his system, as well as checking on other viruses too.

 

I know that the diagnosis of PANDAS is clinical in that the throat swabs and blood tests give information that leads to the diagnosis but arent the diagnosis per se, if that makes sense. The combination of the test results, coupled with clinical observation and the presence of sudden onset tics, OCD etc all work together to bring about the diagnosis, which is often only confirmed by the diminishment of the symptoms with prophylactic antibiotic treatment.

 

I found the old thread on Ronna's info on PANDAS which I hope will give clearer info.

In the second post, Ronna goes into detail about the throat and blood tests

 

http://www.latitudes.org/forums/index.php?showtopic=374

 

since then, there has been an explosion in further knowledge on PANDAS and so

hopefully other posters here may have more recent info. I am sure Ronna has much more, but it may be a while before she pops back in after the birth of her baby son last weekend

[Robin O]

Chemar, Thanks for the info. I talked with my sons Dr. and he does not feel like PANDAS is possible since my sons TS symptons have been consistent since the age of 7. He did not have a sudden onset of his TS or OCD.

 

I have been reading alot about alternative treatment for OCD and have read that folic acid can make OCD Symptons worse.

 

My sons takes Bonnie G's vitamins which contain 400mcg per 10 caps. I wonder if this amout can cause problems or if it needs to be higher doses. I dont recall ever seeing a multi vitamin without Folic Acid.

 

I have an appointment with a DAN dr. in August. I am hoping he can help me sort out all these supplement questions. Robin

[kim]

Robin,

 

I'm so glad you found a Dr. so quickly. Your post made me think of Dr. Walsh's article which I have saved to favorites, and the more I learn, the more I get out of rereading that article. I went back through some of your posts and see where your son has the environmental allergies, as does my 12 year old, so according to Dr. Walsh that would suggest the undermethylation/high histimine, and therefore the avoidence of folic acid. Claire had mentioned this a long time ago, but I knew the vitamins were helping, so I thought it may be a low enough amount, not to be a problem. From the Walsh article:

 

A word of caution --- Manganese supplements tend to aggravate Tourette's Syndrome, and can also worsen the symptoms of OCD.

 

Trichotillomania has been associated with OCD and undermethylation. If you can confirm the presence of undermethylation, the patient should benefit from (1) aggressive doses of l-methionine, calcium, magnesium, along with augmenting nutrients zinc, B-6, Inositol, Vitamin A & C and (2) strict avoidance of folic acid, choline, DMAE, and copper supplements

 

I know this is discussed in other places within this article too. For anyone who doesn't know, trichotillomania is pulling body hair out-head, eyebrows etc. and just happened to be included in the methylation info. I was looking for, but someone on this forum, or braintalk has dealt with this with their child.

 

The head shake I mentioned a couple of days ago has continued too. It is not very bad, but it is there, for a few days now.

He had not taken his allergy medication this morning, and it is very windy here again today. I noticed the whole right side of this face was red and he said his face and neck were itchy. He seemed touchier in the mood dept. today too. I had him take a zyrtec, and the redness and itcyness went away, but the moodiness and head shake really didn't change. He was prescribed 3 medications for allergy, I only give him one.

 

The new Ped. DO specializes in allergies. I would like to get him on something more natural and without aspartame.

 

Just wanted to tell you that the folic acid is someting I have wondered about too. I would hate to give up Bonnie's vitamins, as I think they actually cut down on the amount of pills you take per day, but if they have somethings that our kids don't need, or shouldn't have, then it will be best. Even if Bonnie's formula doesn't turn out to be perfect for my son, I will always be so very grateful to her. Those vitamins have been what convinced me that there was truly hope for treating this syndrome without medication, along with this forum.

 

Kim

[Giselle]

Hi Robin, I'm relatively new here to posting but have been reading for over a year. My son was doing amazingly well on Bonnie's Vits for about 7 months - I mean amazingly well - no tics at all unless he ate something really offending like red, blue or yellow dye in someone's b-day cake! Then this April he got really sick with the flu and then when the fever broke from that two days later he got a second fever. I knew it was a secondary infection so took him in right away - it ended up being Strep. Antibiotics took "care" of that and we hit him hard with probiotics to try to keep the yeast down but it seems he has never got back to his earlier level of TS. Bonnie's vits no longer worked - in fact they made him a lot worse. With intuition and some help from here and Brain Talk I figured out that it was more the fish oils but the TS Control also seemed to offend. With the TS upping the ante, so did I - I found a DAN doctor, had a huge battery of tests done (most were super fun for him - I mean peeing in a cup for a 7 1/2 year old gets huge giggles!- we made it fun) found lots of allergies, a yeast problem, a nasty bacteria gut bug, B6, Calcium, Magnesium, C deficiencies, wacked Copper to Zinc ratio. . . and high histamines! So now I'm making sure there is no folate in any nutritionals he takes. We also have an Environmental Doctor who keeps reminding me that because of the hyper-sensitivity they can also build up intolerances quickly - what works one day will offend the next and she suggests lots of rotation - even vitamins (oh and if your son has an allergy to corn watch out for the different components of vitamins because they sometimes use maltodextrin (corn) or cellulose (could be from corn) in vegetarian capsules). I am so glad we got our DAN doctor as he has saved me lots of time with the guessing game of what's going on in his body and finding most of his allergies quickly. We now have a plan of attack that seems to be working - still lurking in my intuition though is that Strep - the DAN doctor explained that people can be carriers and have it all the time- I believe that even though the sickness is "gone" that it isn't and it just takes ages for them to get back to normal and only with lots of rest, immune support and vitamins.

Good luck and I hope you get a great DAN doctor soon!

Giselle

[Robin O]

Giselle,Kim

 

My sons Dr. told me That PANDAS is not very common and he has only treated one person in the last 10 years with true PANDAS. I just think he does not believe in it and therefore wanted me to feel like psycho Mom for suggesting the tests.

 

Will a DAN Dr. order the tests for strep titers? I have wondered if my son is a carrier because my 2 year got strep last fall/winter 4 times and he stays home with me.

 

I suggested this to our Ped Dr. and he said strep carriers are not very common!!

 

Its for frustrating. The DAN Dr. we are seeing has worked with TS kids before so I am encouraged. His office is a 7 hour drive from my home!! But I think its worth it. His nurse said he could do phone consults but he would want to see him every 3-4 months for follow ups etc.

 

I am so tired of guessing what works and what does not espiecally with food sensitivities and vitamins.

 

Bonnie's vitamins seem to help keep things mild but we have never seen a day without tics and we might not regardless of what we try. That is O.K. I just want my son to have a happy childhood and not look back and think it consisted of vitamins, Doctor visits etc.

 

The onset of the severe head shaking tic finally made me realize I cant do this on my own anymore.

 

I do have good news about the head shaking. It has seemed to carm down the last 3 days. He still does it but not as often and not as severe. It so hard when new tics start but they usually decrease or stop ( and then a new one starts)

[kim]

Giselle, Robin,Caz,

 

Giselle your post was a perfect example of exactly what I have been anxious about. It occurs to me that Dr. Walsh says most psyc. drugs are powerful antioxidants.

 

From Dr. Walsh:

It's true that mercury can be devastating to the brain and chelation cleans up peripheral mercury. However, most of us have a very effective system to protect us from mercury, namely glutathione & metallothionein in intestinal barriers, liver, blood/brain barrier, and the brain itself. Chelation to remove metals should be helpful only (a) in cases involving massive poisoning by heavy metals, or ( in cases in which the normal protective systems fail to function properly. However, chelation can provide 2-3 weeks of benefits just from the antioxidant effect, whether or not there are nasty metals present.

Did you know that nearly all psychiatric medications are powerful anti-oxidants? I don't think this is a coincidence.

 

I have been wondering for a long time why you read report after report of the medications working beautifully, in the beginning. I personally have seen the same results with the vitamins with 2 son's, it's just undeniable. However, I have always felt, it was not going to be the end of the road. I do want to say that this recent head shaking flair with 12 year old, has been the mildest it's ever been. But I don't want any surprises.

 

Robin, my Ped actually told me my youngest son was probably a streph carrier. He would go in with a sore throat, the Dr. would say it looked midly red, then it would come back streph, time afer time. Late Winter early spring he had a painful throat complete with white spots 3 times in about 6 weeks, but the cultures were coming back negative. Older son had a positive streph during this same time. I am wondering what we are to do about this though. It is the streph antibodies, that are supposed to affect the basil ganglia, so when you take an antibiotic, do these antibodies not form? Do we put them on an antibiotic, asap? I know the rational answer is to strengthen the immune system so they are not so vulnerable to streph, but what do you do in the mean time?

 

Oldest started on a string of streph infections when he was almost 4. Finally had tonsils and adnoids out. Boy did I give him a lot of tylenol during a two to three week period with that. Tylenol with codeine no less. He had a horrible time with that surgery. Now I learn that tylenol depletes glutathione. Does anyone know if Motrin does also?

 

DO may be great for food sensitivities, yeast issues if present and allergy treatment, but I really wonder how many of this type of question he will be able to answer (tylenol)

 

Caz, can you comment on what kind of results you have seen since starting the NDF?

 

Kim Don't know how the sun glasses guy got in there. That's supposed to be B

[Caz]

I have posted some info on ndf plus usage on the thread called NDF.

 

Interesting Kim about results suggesting b12/folate deficiency. The other stuff about heavy metal treatment and its antioxidant properties was interesting also.

 

Caz