immunologist testing

[michele]

I was able to get my five year old into the immunologist on Mon. This is a starting block because I have never got any where with ped, or neorologists. He has had all the symptoms of Pitands. The only blood work he has had done was a strep culture. What blood work should he have done? Any advise for the appointment?

[Dedee]

Michele,

I don't mean to be a downer. I have had my son to an infectious disease specialist and all I got was an ASO and a culture. Not really enough information. I couldn't even get them to repeat the ASO to see if it is going up or down. I am just so frustrated with the whole process that I took the advice of someone here and ordered a PANDAS profile kit from the Immunosciences Lab in California. They will do this at a discounted rate and they know EXACTLY what to look for and how to interpret the findings. I just recently ordered my kit and have not received it yet. If we decide to make a trip to Florida to see Dr. Murphy we may not do the panel. However, if it seems that we may possibly get cooperation from someone here we will move forward with this option. You have probably read about this lab in Dr. Vojdani's article in Latitudes regarding PANDAS. I wish I had the exact link to post for you, but I don't. Maybe someone will come along who does. Good Luck.

 

Dedee

[faith]

I just want to add something here, since you mentioned it. How do you differentiate PANDAS from PITANDS. I know what it stands for but how do you test for the PITANDS? Is that also having to do with the strep connection or just any viral illness? My son did have blood tests which test for the ASO titres, twice. His were below 60, which I believe is normal and so this does not seem to be the case for him.

I just want to mention for those looking into this, I think the PANDAS thing is not an official diagnosis. It is, I believe an ongoing study that connects people who have escalations of OCD or tics with strep infections, and subsequently high strep titres as found in the blood tests. Even if this is found, I think (what I was told anyway, is that it is still not a definitive thing, but something that they are just starting to connect the dots with. I think that is where the PITANDS comes in, as now they are feeling it could be with any pediatric viral or infections, not just strep. Forgive me if I'm not too clear on this, I barely understand it myself.

 

Anyway, I just want to tell of one incident I had with my son back in May of last year. He was doing well (after he had vocal that went away coinciding with our removing milk and obvious dairy) He came home one friday afternoon and was blinking and looking up with his eyes. Then over the course of the weekend it got worse and worse. We were at a birthday party at someones house/yard and he was also very hyperactive and extremely annoying, I felt like I couldn't control him. I was in tears. On the way home he said his throat hurt, and so that monday we went to the doctor who believed he had strep throat (he had red dots at back of throat). I wasn't even there for that, I was just so concerned about the blinking and wanted to start addressing that. He gave us amoxycillin for the strep-- and it was wierd--within two days the blinking stopped. I thought about it and read and read and so somewhere along the line told the pediatrition of this, and asked if he knew anything about the PANDAS. He was familiar, but not an expert and so referred me to an infectious disease doctor. We went and he knew all about what it was and did the proper testing. (As I mentioned, I am in New York, so finding docs are not usually too difficult).

 

SO, anyone reading this would probably assume that this was most probably an issue for us, but NO,

the titres were not high. (less than 60). And we also had another one done when we started with the DAN doctor in October, and it was roughly the same. So its all so confusing to me what that episode was all about. So I wonder if there is something else, not strep, but some infection that can cause the exacerbation, because as I said, he does have two things going on right now, in spite of all our efforts. I'm just throwing this out there to add to the confusion!!

 

Any thoughts are welcome.

Faith

[Chemar]

here is some info on differential diagnostics for PANDAS vs PITANDS

 

http://www.webpediatrics.com/pandas.html

 

I have a number of other resources but cant look them up right now as I am working.

 

do also look at the list of threads here as Ronna recently made a really good post re this. I will see if I can quickly find it and will bump it up

[michele]

Because Andrew has had the blinking, finger chorea movements, hyperness, obsessiveness,emotionalness, frequent urination, seperation anxiety,following the stress of illness and high fever,it is not related entirely to strep infections. He has shown the symptoms after strep, after ear infections, virus such as flu and colds. The neurologist has seen some kids outgrow these behaviors as their immune system matures and they get less illnesses with fevers. The neurologist stated there is no treatment to improve long-term outcomes. He ran no tests not even a strep test or titers. My pediatrician also felt because of his age he may improve his behaviors and hyperness and is too young to treat for ADHD or OCD. So I have never received an official diagnosis. The neurologist I saw a few years ago gave me the info on PANDAS and said it may be this or PITANDS. They never ran blood work or did the panel of tests. What sort of Dr. does the PANDAS/PITANDS testing? I called the DR. in Florida but never heard back from her. There is a DAN Dr. who sees and treats PANDAS an hour away but I can't get in to see him until July. What sort of Dr. tests food sensitivity? I ordered monolorin but it never came in yet. My son was hyper the past few days and is now getting a cold. It is challenging in the winter with a household of kids to keep him healthy. My son has been having this trouble since he was one. Now I wonder if flu shots have made him worse. I was trying to keep him well but the Mercury may have made him have more trouble. I know very little about all of this other then what I read online. Are there any good books to look up? Thanks.

Michele

[kim]

Michele,

 

I was reading back through your posts, and realised that you're pregnant. Congratulations on your pending arrival!

 

I bumped a thread that Claire has kept current, for newcomers, that lists various tests, and how you can obtain them. Many do not require a Dr.s signature. I'm not sure if there is a viral panel on the Direct Lab site or not. I have read on other forums, where parents have ordered (or their Dr. ordered) this type of test for things like herpes viruses, Epstein Barr, measles, etc.

 

I have read of parents using things like grape seed extract, monolaurin, olive leaf extract, etc. to clear viruses and some forms of bacteria. One thing I have read several times, is yeast may increase when these things die off. Does your son exhibit any symptoms of a yeast problem? When using monolaurin, you may want to watch out for that. I have never used it with my boys, so I'm only repeating other posters remarks, here.

 

Could I ask, when your son got the flu shot?

 

Did you notice any correlation with symptom increase?

 

Kim

[michele]

I don't really know anything about yeast symptoms. Could you explain on that? I had him get the flu shot a couple weeks before he came down with strep in Nov.

He had a penicillin shot then. It was Dec. when he started with the explosive symptoms again after the flu and fever. He had been symptom free before that for some time summer I believe because he had not been sick in while. Yes I am due anytime now. I am not sleeping well. Thanks.

Michele

[faith]

Michele, I too am curious about the flus shot your son had. Why did you get that and was your child already exhibiting symptoms long before that? And are you saying that he only gets the tic symptoms after an illness or on and off all the time? How long is he tic free in between? Also, there was another mom (was it you or Patty) that said not long ago on another post that she was talked into a flu shot for her child, just curious.

 

Sorry for the questions, I am very analytical and like to know of all experiences, you never know where the next clue could come from.

 

Thanks

Faith

[kim]

Michele,

 

Honestly, the thing that may be the most helpful to you (besides finding the right Dr. to guide you)is to read, read, read, on this forum. I know that your time is probably really limited right now, but it's so hard to convey the vast experience here.

 

A couple of things that we attribute to yeast overgrowth around here are.... sugar/carb cravings, possibly the inability to absorb/produce/convert nutrients from foods, itchy ears. With my youngest son, behavioral changes. He gets a very white tongue at times too. Some parents report, spacey and uncontrollable giggling with yeast or a type of bacterial overgrowth.

 

Here is one link for a yeast thread on this forum. There are many more. You can use the seach feature at the bottom left of the first page to look for specific threads on any topic. It's really helpful!

 

http://www.latitudes.org/forums/index.php?...c=1472&st=0

 

Here's one of many articles, if you google yeast. If you want to get more specific on symptoms and possible cause of problems in this area, try Yeast+Autism.

 

http://www.majidali.com/yeast.htm

 

Two other things that may be helpful are Sheila Roger's book;

http://www.latitudes.org/book.html

 

and finding a Dr. that will be willing to help get started with testing prior to your DAN appt. Here is a link provided at the top of this forum, for finding medical help.

 

http://www.latitudes.org/forums/index.php?showtopic=565

 

Most of us, have found very little support from Reg. Physicians. Until a treatment plan is studied and accepted, it's very hard for them to endorse or offer guidance with it. Also, one of our Pediatricians told me, that he just really had no knowledge of vitamins and minerals or many of the things that I was talking about, in relationship to tic syndromes.

 

If your son has had any type of blood work, or will have any time in the near future, I would definitely ask to have his zinc level included in that. If they can do copper too, all the better. Many have found the zinc/copper balance to be out of whack and it can be very important. I did get my regular Ped to do zinc level and IgG food testing but the food testing was like pulling teeth. No one knew that the test was even available through Quest labs. I was able to get my insurance to cover it too (Health Plus), but like I said, it was an ordeal. It only covered 20 foods but it did give me enough evidence to know that there was a problem with food sensitivities. Any thing that you are able to have your Reg Dr. test for, be sure not to have Tourette Syndrome or anything related to it, in the billing code or insurance will not cover it. It has to be coded for something like gastric upset, allergies etc.

 

That is probably enough for you to try to absorb right now.

 

I wanted to remind you to try to relax, and take things slowly. You have such a head start on many parents, who don't have any idea that there is so much they may be able to do,to help improve their childrens health, until they are much older.

 

There are many here who will try to help you through this.

 

Kim

[michele]

Michele, I too am curious about the flus shot your son had. Why did you get that and was your child already exhibiting symptoms long before that? And are you saying that he only gets the tic symptoms after an illness or on and off all the time? How long is he tic free in between? Also, there was another mom (was it you or Patty) that said not long ago on another post that she was talked into a flu shot for her child, just curious.

 

Sorry for the questions, I am very analytical and like to know of all experiences, you never know where the next clue could come from.

 

Thanks

Faith

 

I gave him the flu shot because I was trying to keep him from getting sick and fevers over the winter. He only gets the tics and symptoms after an illness or virus. He usually has tics(repetitive finger movements), hyperness, emotionalness, feeling the need to urinate frequently, clingyness. This typically lasts about eight weeks or so. Then it goes away until the next virus.

[Chemar]

Michele

altho i am no expert in this, from everything you are describing it sounds like your son has a classic case of PITANDS

 

i did post a link for you before of the diagnostic criteria/testing for PITANDS> I would recommend you printing that out and taking it to the appt with you on Monday

 

a full viral panel needs to be done to dx as well as a detailed history of illness,tics,etc

 

Hopefully the immunologist will be able to help....if not, I would really recommend finding a DAN or other doctor who is knowledgable about PITANDS-PANDAS ....best way to check that is to ask before you make the appointment.

 

(((((Michele)))))) I can sense how very overwhelmed you are. Please dont lose hope of being able to help your son. Once you have found a competant doctor things will start to come together.

I know you are in the final stages of pregnancy and honestly, you owe it to yourself and your new baby to focus on that. all this stress cant be good for you. once your baby has arrived and you can refocus, then you can move forward step by step.

Please feel free to send me a private message if you feel you want to discuss this in more depth, and I will give you my email address so that we can communicate quickly and more directly. I will do whtever I can to try to guide you thru this

 

Cheri