Jump to content
ACN Latitudes Forums

PANDAS and Chicken Pox Vaccine - HELP


Tracey111

Recommended Posts

^_^ I am home sick from work today because I was researching tics and the chicken pox vaccine all night. I have come up with PANDAS, thanks to some of these websites where informed parents help out un-informed parents.

 

I have not read enough on it to determine if there is a cure, or even what the entire "PANDAS" is. My 6 year old son has all of the symptoms of PANDAS (the tics are the main symptom, and I am just realizing that he has been obsessive about thing lately). These symptoms started 3 weeks after he got the vaccination. (Now I sit here is tears remembering how his older brother was pulling him away from the nurse and they were both screaming about getting the vaccine!!!!)

 

Has anyone had experience with this a PANDAS diagnosis? I want to call my doctor to get tests done, but I am overwhelmed because I have been researching tourette's for three months and now I have all this new information!! Can anyone help?

Link to comment
Share on other sites

Hi Tracey and welcome,

Could you give a little more detail? When was the vaccine administered? Recently? And what are his symtoms as far as tics/ocd go? Would you say it is pretty dramatic and sudden? Had you ever seen anything that could have been a tic in the past such as blinking, smelling fingers, etc.? Anything else you can tell us about his history?

 

Why do you think it could be in the PANDAS category? Has he been sick before the tics started, namely with strep throat? I'm not sure if the vaccination is an indicator of PANDAS, but the assault of the vaccines (mercury) could set it in motion I suppose. True, there is so much information on this, and none of it is cut and dry, so please don't panic and wear yourself out trying to figure it all out yourself. Those parents that are dealing with it will be along to guide you. I don't think my child fits that category, but I have had had the testing criteria done but am still very interested in this subject. Try to get some rest, I know hard, but you will start to sort this out, it just takes a little time.

 

Bllessings,

Faith

Link to comment
Share on other sites

I am by no means an expert, but have been researching all of this for months now. I totally understand your all-nighter (all too well). I have figured out a few things. First, if you think it might be PANDAS, you should go to the doctor and ask for strep titres to be taken. Get the blood test -- not just the strep screen. If it is elevated, I would see if your doctor will prescrbe an antibiotic.

 

My daughter is too old for a PANDAS diagnosis, yet met all other criteria. When she went on antibiotics, the improvement was nothing less than dramatic. We have improvement on any antibiotic (at least the ones we have tried so far), but some are better than others. If you can get one without artificial colors and dyes, I would go for that one. (Why dyes/colors are in these meds anyway, I don't understand!)

 

There have been reports of vaccines being related to tics -- you can search that on this site. It could be the mercury, or other chemicals in the vaccine.

Link to comment
Share on other sites

Hi Tracy,

I'd ask how you were ,but, I know all too well. My then almost 5 year old woke up a different kid one day with severe ocd/vocal tics this past summer after strept. We had NO IDEA what was happening and I was a mess for weeks. We are 99.99% sure of PANDAS but as of yet have not received an "official" diagnosis. We have tried, seen docs, neurologist told us he didn't believe in PANDAS and basically gave us no diagnosis what-so-ever. By the time we saw him, my son was asymptomatic. Okay, yes, get blood tests done for strep titers, ASO AND AntiDNAase B titers, be firm, we had to push for these. Please be aware if these results are normal, it does not mean he does not have this PANDAS disorder, it could still be PANDAS but also be PITANDS, which is basically the same thing but caused by a different micro organism other than strep. (other bacterias (mycoplasma), virus, immunizations, etc) What you basically need to look for are the 5 diagnostic criteria for PANDAS or PITANDS .(my son has all of them)

If you note, blood titers are not mentioned in the criteria, but, those tests Can sometimes be very helpful. CURE? well, perhaps, IVIG, PEX, has been mentioned to "cure" this disorder, but, those treatments are still highly controversial, as is PANDAS in the first place, which is why you will find it is hard to get help, you have to search around for a doc. Manageable? yes, mainly with antibiotics, but also with supplements, cog. behavioral therapy, etc. Some say antibiotics have been a miracle. Well, PANDAS is diferent in every kid as far as severity, length of exacerbations, etc. But, given no further infection, the PANDAS tics and or ocd, should come on suddenly, and then SLOWLY over the course of weeks or even many months, wane down to a minimum, or even dissappear completely, until, the next strep and/or virus. It took about 2 weeks of the bad vocal tics to disappear, then another couple weeks for the ocd to dissappers, total exacerbation time, about a month. My sons blood titers are normal, we didn't have them drawn till 3 months after symptoms, so, we very well may have missed the boat, I still strongly consider him PANDAS despite the normal titers now. He is doing very well now, thank god!! Nothing anyone would notice except me. We are currently seeking a doctor who we can work with to control this, it hasn't been easy! My goal is long term antibiotic, and if need be, we would consider IVIG if things got to that point. Check out www.webpediatrics.com, this site is helpful, so is the doc, you could e-mail him and he will return your e-mail usually the same day. Check out the studies from NIMH, also. Hope this helps, you are not only! God Bless. Oh, I have the understanding this problem USUALLY ends after puberty when their immune systems are more mature and they have more protection.

Link to comment
Share on other sites

Thank you all! I am getting ready to sign off and get some sleep....

 

The Chicken Pox mentions Strep A (virus/bacteria???) and I put the PANDAS link with it because of strep A an tics. Does the vaccine contain a similar live "strep throat" bacteria? I have no clue on this and that is where I came up with the question of a link? I am a finance major...far from ANY FORM OF medical knowledge!!!!!

 

OH, and now that I found this link, I do recall a sore throat, but I have no clue what part of the summer that was........I do recall getting a flash light to look at his throat, but found nothing..

 

When I looked up PANDAS, I saw several symptoms my 6 year old son is having:

 

He was vaccinated at the beginning of August. Two weeks later he came home from school two days in a row and got in his bed SCREAMING like crazy. I could not calm him down and he cried for an hour each time.....he used to be a laid back child. Since August his temper is so quick and fierce. He gets so mad SO easily, and I can't calm him down.

 

The next week the eye tics began. I made an eye doctor appointment because he was holding everything about 2 inches from his eyes and ticcing. HE said the eyes are fine. Pediatrician called them "transcient tics", after she researched them!!!!!!!!!!!!!!!!!

 

His tics got progressively worse until two weeks ago. They were so bad that head jerking was involved and the teacher emailed me a few times saying that she could not find any pattern of stress to trigger them. We went away for Thanksgiving and they started to subside. This week they are very minor. So, it has been 3 months with a peak about two weeks ago.

 

I do not see OCD...but last night he was obsessed with some medicine I put on him....my husband had to come in the house this AM before they left because he was so upset and needed to know how long the medicine would stay on! He could not fall asleep last night, as he kept calling me in to ask the same type of question. That is not like him.

 

He has also been asking me to hug him several times before I leave the house and this week he has started running outside to say goodbye after I hug him a few times....this is new and not like him either (seperation anxiety???)

 

Those are his symptoms....does this sound familiar??? Thanks for telling me the type of tests to get, it will save me some time when my doctor calls me back.

Link to comment
Share on other sites

My goodness, extremely familiar, I actually got chills a few times reading your post. My sons behavior started to change first, also, before the sudden onset of the tics/ocd. The tics came on one day, got progressively worse along with his ocd, then gradually slowed down to almost nothing. Your description of a few of concerns your son has does sounds like ocd to me. The concern of medicine on him, my son would freak about stuff being on him too, kind of a contamination, gross, germy thing. My son also would tell me goodbye over and over again, and then also run out the door to say good-bye one or two times more, with many hugs, YES, this is separation anxiety!!! My son would stall and stall at bed time, and want to sleep with me, and ask me questions over and over, although when his ocd was at a peak, he didn't want to come near us. Asking the same thing over and over, it is a form of ocd; checking and reassuring, repeating etc. As far as my sons temper, very short when in episode, easily upset, angry, crying, etc. Your sons symptoms are very similiar to my sons, both exhibiting ocd and tics, I would highly suggest you look into the PANDAS/PITANDS, and either rule out or get a diagnosis, because the treatment is unique to traditional ocd, TS, although the symptoms mimic one another. Please feel free to ask any questions, this forumn can be of great help. Take care.

Kelly

Link to comment
Share on other sites

I know that if he already had a predisposition for tics that the immunizations like the flu shot can put him over the edge into a tic disorder(may be transient). Also to be PANDAS there must be more then one reoccurance of a PANDAS episode. What you are decscribing does sound like familiar behaviors though. I gave my son who already had some strep and viral induced eyeblinking and finger chorea and compulsiveness, a flu shot last year along with five year old booster shots for kindergarten. It put him into a downward spiral. He then had urination frequency trouble, hyperness, ocd, seperation trouble, and repetitive finger and toe cracking. It lasted about two months then came back in about three months. He was exposed again in May and was put on daily antibiotics PenV since. He has still had another epispode from Aug. to now on the Pen V. It is finally subsiding however. Each time it takes longer to heal the brain and the behaviors are worse. Also now they don't go completely away. He remains somewhat in hyper mode all the time and has fine motor delays. We have dealt with this for four years. It comes and goes with each exposure to strep or infections. Don't jump to a diagnosis though until it has happened repeatedly. Possibly you are dealing with a residual from his shots.

 

Kim is our vaccine expert here. Check out the strand on vaccines. Also search for recent studies on PANDAS. Dr. Murphy and Susan Sweedo are some of experts on research. All the best. I hope things turn around for you soon. Hre is a simple article to understand.

http://www.worrywisekids.org/anxiety/pandas.html

Michele

 

^_^ I am home sick from work today because I was researching tics and the chicken pox vaccine all night. I have come up with PANDAS, thanks to some of these websites where informed parents help out un-informed parents.

 

I have not read enough on it to determine if there is a cure, or even what the entire "PANDAS" is. My 6 year old son has all of the symptoms of PANDAS (the tics are the main symptom, and I am just realizing that he has been obsessive about thing lately). These symptoms started 3 weeks after he got the vaccination. (Now I sit here is tears remembering how his older brother was pulling him away from the nurse and they were both screaming about getting the vaccine!!!!)

 

Has anyone had experience with this a PANDAS diagnosis? I want to call my doctor to get tests done, but I am overwhelmed because I have been researching tourette's for three months and now I have all this new information!! Can anyone help?

Link to comment
Share on other sites

Tracey,

 

The only thing I can relate to the chicken pox vax and strep, is the possibility of staph or strep infection following the chicken pox lesions becoming infected by one of those things, which of course doesn't apply in your situation.

 

IMHO, what your son is experiencing could be from either thing. The vax or strep.

 

Has your son had confirmed strep in the past? If not, the symptoms may not have shown up as quickly as they may have, in a child who has had strep repeatedly.

 

The other scenerio could be, where the two things (as in a strep infection followed by a live viral injection) triggerd this.

 

I wish I knew if a viral panel, that may show abnormally high varicella titers would help? Maybe one of the nurses on our forum could comment on that.

 

What a coincidence I found you, and you had found us, only hours before!

 

I've been trying to stay out of the conversation, as I tend to "go off" in too many directions. I knew some of the wonderfully specific posters, would be of most help. Anyway, welcome.

 

 

for anyone who would like to read the thread that I'm referring to.......

http://www.mothering.com/discussions/showthread.php?t=800381

 

I had PMed Tracey and Caryn had already led her here!

Link to comment
Share on other sites

Tracy, I forgot to mention, it is VERY common for PANDAS kids to show NO signs/symptoms of Strep throat. That is what makes this very difficult, my son has had strep and showed NO SYMPTOMS at all, we only found out because the rest of us got it and when we checked him he was positive. Sometimes strep can totally be missed in these kids. When these kids get strep, their symptoms are behavior change, tics, ocd. When this occurs, it is very adviseable to get a CULTURE, not just a swab, done on your child. You'll find many posts where kids were positive to strep with no other symptoms other than behavior change.

 

Kelly

Link to comment
Share on other sites

Tracey,

Your story is so similar to ours! Our daughter had some screaming nights and day spells and some of what we now know are ocd tendencies similar to what you describe. For two years now we have been dealing with an on and off angry, oppositional child who we thought was just going through a very difficult phase. We have recently caught strep in her with virtually no symptoms (during one of which she was screaming in the night!) and feel positive now that the past screaming episodes she had strep with no classic symptoms so we missed it.

 

Go to your doctors and get an ASO AND Anti-DNAse titer drawn. It wouldn't hurt to get a throat culture first. Make sure they culture it and I would suggest getting it for any strep, B etc., because other streps can be treated with antibiotics as well. If the numbers are high most doctors will still give you an antibiotic. Even if the numbers are not high but the symptoms are very strongly present you may want to find a doctor who is willing to give you a trial run of antibiotics to see if the symptoms resolve.

 

Search through the threads here and look up more info on doctors, tests, treatments etc. Keep asking questions, even if they don't get answered right away.

 

From now on you will need to test your child and other family members for strep often - especially if there are classic or non classic symptoms. Believe it or not, you can buy rapid strep tests to use at home - just google it. A culture is always best though.

 

I know this is very scary - we are still terrified about what is going on - we have only recently put the pieces together to even consider PANDAS - most docs don't know anything about it and will deny it in the face of lots of articles etc. This site will help you find one who does and help you talk to your current docs. It is very hard to know what to do so just take it one step at a time. After the titers are drawn, your next steps can include diet and nutrition and supplementation and many natural treatments if you are interested in trying that. Good luck.

 

Oh also, there are some other things they can test for that can cause neurological symptoms like Lyme disease.

Link to comment
Share on other sites

I just want to chime in here and say I can relate to some of the ocd that your are all describing (however non-pandas), like the part about saying goodbye and the hugging, but mine does it so non-chalantly, like I don't feel like he's having separation anxiety, just that its like a ritual he must do when I leave the house and he will stay with daddy, he'll make sure he comes up to me a couple of times and hug me and say "bye mom" the same way every time. And despite being 8 1/2, still stalls for bedtime and figures every trick in the book to end up sleeping with me/us. I mention this because I think these tendencies, which I am just now beginning to realize are an ocd type of thing, are probably the type of things that are causing him to not complete things in a timely manner in class. He just sort of has "his own way" of doing things, just can't "go with the flow". But he is savy about it all, he never looks like he's acting "strangely" or "being defiant". Now I am wondering, is this behavior subtle? -or obvious in an alarming way? - in your PANDAS suspected kids? And I have to ask, what do you all mean by "screaming"? .. Like they are yelling in some sort of pain? Crying loudly for a long time? or yelling at you all?

 

^_^

Faith

Link to comment
Share on other sites

PANDAS is too complicated to understand. Child should have sudden onset ot Tics/OCD after getting strep . Tics just explode and are very wild and so is OCD. You should check oaso titers after 7 days of strep and 3 weeks later anti d-nase titers. high count of these means body is producing these to fight strep which is normal but this becomes problem for kids with pandas as it tries to attack the brain where movement control is ( basal ganaglia) . I have Panada kid but no doctor was able to detect and every one made me run around now I am going through the second episode of strep and some tics . Panada kids will get better with time as long as there is no strep again , I have seen that after may my kid started to get better and was ok till he got second strep.

 

He even had CP vaccine in september and was ok till he hit strep . I did't go to doctor as i know this will be waste of time again as tey will just misguide you. Now i keep strep test kit at home and so do zithromax which i intend to use for 10 days insted of 5 for strep. Kids with TS have more problems with Vaccines then healthy PANDA kid and this place is loaded with information about Vaccines affects on kids with TS . Chemar is the best person to answer the questions on Vaccine affects on TS kids. You wil have to be strong and judge what is best for your kid . finding a good doctor is the key , who will listen to you and willing to work with you.

Link to comment
Share on other sites

THIS SITE IS SO AWESOME!!!! I wish Doctors would get on and research. You guys are like free research assistants for them...but I guess it would fall on deaf ears.

 

By screaming, I mean crying LOUDLY to a point of not being able to breathe and yelling at me when I would try to calm him.

 

There was no muscle weakness that I noticed. My son is very active and all muscles. I know that there was a sore throat this summer but it never got to a point of needing to go to the doctor. We had a night of vomitting (July) 4 weeks BEFORE the vaccine....and one other vomitting problem near that time. Both times I feared it was the stomach flu....but no one else in the house got it......any info on vomitting and strep?

 

I called the doctor asking her to test for Strep based on what I read about PANDAS. They called back and said to come get the prescription. I am going to take the names of the tests that you suggested with me.

 

QUESTION - When I had both of my children I had to be on an antibiotic for some "strep" in my body. The OBGYN said that some people just have it present in their body. I still don't understand what that was....is there any relation with the "strep" and the "strep" you are referring to? If so, how many moms on this website had to have that same antibiotic and are now having issue like me???

 

QUESTION -Is it too late for the blood tests. The tics have been here for several months and the sore throat was at least that long ago. The tics are slowing down a lot, would the tests show anything?????

 

I read through my prior entries...no where did I mention that my NEPHEW (My sister's son) has Tourette's. He did not have problems until 3rd grade. I have thought that genetics is involved.....

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...