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[Williams Dad]

First I would like to apologize for my typing abilities and my spelling.( Very Bad).

 

My name is Greg and my wife's name is Karla. The story begins back in February. My wife,myself and both kids all started to get strep. This had been going on since then. Both of my kids and my wife had there tonsils and adenoids taken out in July to help with the strep situation. I am scheduled this December 17th to get mine out.

 

Then about 2 months ago we notice William doing the throat clearing thing. We kept telling him to stop for we feared it might became a habit. Now he is doing the eye blinking and not the throat clearing anymore. We took both kids to the doctor Monday the 13th to talk to her about the blinking and throat clearing.( And to get flu shots). The Doc said to get a eyes exam done and then mention the possibility of Tourette's. Instantly we freaked out. I then looked around the Internet and sure enough he had all the signs of TS or I should say tic disorders. Thinking about this we look back and my wife and I remember other tics he has done in the past few months. Which we thought is was William just being a kid. While playing T-ball he used to pick or pull at his face (eye lids and eye brows). Never thought of it at all. Now we see a lot of things, like: pulling the front of his shirt, blinking, constantly touching his face, taking his clothes off as soon as he gets home from preschool, touching his ears . Almost like he is itchy. Repeating phrases and so on.

 

While searching the Internet I found things about PANDAS and strep possibly linked together, with TS. I have no idea were to start. We have a eye exam today and then Monday we go to the neurologist. Then the following Monday we are going to a holistic healer. What I do know is, we all are taking meds right now for strep. (Zithromax) I have read this could be bad or good. That is were the confusion parts sets in. All I have been doing since the 13th is reading and trying to gather as much info as possible.(Complete over load) I am so exhausted, confused and of course scared.(non-stop crying) The confusion part is that I have read a lot of kids go through this and it could very well just go away with time. All the talk about transit and complex tics confusing as well.

 

Sorry for all the babbling, I just don't know what to do. I found this forum and all I can say is WOW. Everyone here is completely AWSOME. I have been reading this forum for 2 days now and decided it was time to sign up and ask some questions.

If any of you have any suggestions, you will forever be in my debt. I am completely willing and able to put as much work into this as all of you have. William is my superstar, I will do anything for either of my children.

 

Some questions

1. If diagnosed with PANDAS will he always have it?

 

2. What if I can't find a Dr. that deals with PANDAS in my area? (north west OHIO)

 

3. What if Doctors in my area don't believe in PANDAS?( William's Dr. has never herd of it)

 

4. Where do I start?

 

5. Is PANDAS tourett's

 

Looking forward to any suggestions and hearing from all of you. I also would like to thank you all in advance for your willingness to help.

 

Please fell free to e-mail me with any suggestions. Or possible give me a call.

 

Sincerely, Greg,Karla,Kate, and of course MY WILLIAM

[dut]

Hello and welcome.. reading your post made me fill up because we were where you are now back in April of this year and felt just as scared and confused. Other here have been on this longer and know more but I'll answer with the little I know...

 

1. If diagnosed with PANDAS will he always have it? i can't seem to get a definitve answer on this.. maybe some children grow out of it after puberty and girls after pregnancy.. both of these can alter autoimmune status. Also adults are less exposed to strep. Some docs use IVIG to modulate the immune system.. efficacy seems to differ from child to child.

 

2. What if I can't find a Dr. that deals with PANDAS in my area? (north west OHIO)Many people go to some national experts - tanya Murphy in Florida, Dr Kovacevic(sp) in Chicago I believe. Others can name more....

 

3. What if Doctors in my area don't believe in PANDAS?( William's Dr. has never herd of it) Go armed with print outs of research papers to your doc.. I took the swedo original research and then the swedo paper on use of prophylaxis.

 

4. Where do I start? (oops seem to pu that bit on next question sorry.. kids in background being dangerous

 

5. Is PANDAS tourett's.. no (but there's recently controversial research saying maybe TS is caused by strep or other infections) I just googled like mad.. looked at anything by swedo and used the scholar search bit on google and read all old posts on here I could find. For us the antibiotics did it.... most symptoms went in 2 weeks then remaining 25% slowly resolved over 3-4 months or so.. we are back on antibiotics for a minor exacerbation and will be on prophylactic for the foreseable future. Longterm antibiotic use scares me but not as much as PANDAS does. Also get a good probiotic if your using antibiotics.. gotta go baby crying.. sorry u need to be here but we found thius forum very useful.. good luck and keep us posted.

 

Danuta

 

Looking forward to any suggestions and hearing from all of you. I also would like to thank you all in advance for your willingness to help.

 

Please fell free to e-mail me with any suggestions. Or possible give me a call.

 

Sincerely, Greg,Karla,Kate, and of course MY WILLIAM

[dut]

My last post was so confused but the kids were playing up :-) I just wanted to post something quickly 'cos I know how alone and frightened this made me feel when it all started. Like I said, others can reply who have better and more accurate info than I. We haven't been down the biomedical road yet but that's our next step. We managed to get symtoms under control with antibiotics but will now explore things like heavy metals/vitamin and mineral deficiencies/thyroid/allergies etc to see if they might have any bearing on why she has this autoimmune reaction.

 

We also supplement with a good quality vitamin and good quality fish oil (if your son can tolerate, not all can - allergies/tic increase)

 

http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html - This is a link to some lectures that include Swedo (did original research on PANDAS) the 4th lecture, and the 1st lecture inludes a Dr Green talking about the biomedical approach.. also good.

 

http://www.webpediatrics.com/ - this is the link to that Dr in Chicago.. some go here for IVIG..

 

http://linkinghub.elsevier.com/retrieve/pi...306987701914471 - an article re: the role of magnesium in TS and related - only the abstract available unless you sign up

 

http://www.pubmedcentral.nih.gov/articlere...bmedid=18495013 - a good general article

 

http://www.aafp.org/afp/20050515/1949.html - another general article.. note they quote other titers that are good indicators for strep in addition to ASO and AntiDNase B

 

 

Anyway.. hope this helps... Danuta

[Williams Dad]

Thank you for responding to my first post. Well we went to the eye exam and as expected he has perfect vision. The Dr. there told me a story of his oldest child. He told me when his son turned five he notice a lot of movement with his eyes(eye dr.) blinking eye rolling and even head twitching. He said this went on and off for about a year and then it all just went away. He did say not that this would be my case but that there is hope. I then told him about the story with strep and the relation with PANDAS. He was very intrigued. He said he was going to do some research on the subject and possibly ask some other Doctors. So we just have to wait until his dr. visit Monday and go from there. Again thanks for the reply very very much I was hoping to have a lot more responses but yours really means a lot.

 

Sincerley, Williams Dad

[dut]

people tend to come on line after dinner.. also if you haven't you might want to post on the Tourettes/tics forum.. you'll also get lots of advice from there...

[Pudgeo]

Welcome to our forum..

Danuta gave you some excellent advice and you already sound like you are researching on your own. As for finding a Dr who understands PANDAS..most traditional Dr will poo-poo PANDAS and tell you it's not real. You need to find a DAN Dr (Defeat Autism Now) These are bio-medical Dr who understand the immune system. I thought your kid had to have autism to see these Dr but that is not the case. If you go to ARI (autism research institute) on their website they have a complete listing of Dr's.

The only ? I have for you is usually with PANDAS there is also some OCD/anxiety issues. Are you experiencing that with your son? Also most PANDAS parents can tell you the day their child got strep because their behavior changed. It is almost overnight..

Have you looked into any possible triggers for the tics? environmental or foods?

A DAN Dr will test your child for food sensitivities and other possible triggers (toxins)

As you can tell my DAN Dr saved me...if I was still believing my pedi my son would still be a mess and put on tons of meds..Sarah

[Pudgeo]

Also can you think of any triggers that my have upset your sons immune system? Did you remodel? paint? change anything at home or school?

I know when I first took my son in to the DAN she had a huge list of things that can upset the immune system.

Just a thought?? Sarah

[EAMom]

Hi Greg,

 

How long has your son been on the Azithromycin? Azithromycin took about 3 days to help my dd's mood, 10 days to help OCD/eating (she had anorexia nervosa from the PANDAS), and 6 weeks to helps tics...so you may need to have your son stay on 1-2 mo. to see if it is helping, not the usual 5 days. Also, it is possibly for your son to have symptoms just from exposure if other family members have strep (or are strep carriers like my younger non-pandas dd), even if he is on antibioitcs (that is what is happening to my dd now, although symptoms are much milder as she is on Azithromycin vs when she had full blown PANDAS last spring).

 

Has he had any other symptoms? OCD, mood changes, temper tamtrums, daytime urinary frequency, headaches? Esp. the urinary issue seems to happen much more in PANDAS cases than regular tourettes. Somewhere I found a Chinese study that showed that less than 2% of non-pandas tourettes kids had urinary symptoms vs. a U.S. paper that said 58% of PANDAS cases have urinary symptoms (sometimes that is the only symptom).

 

Also, I know of at least 1 person who did better on Keflex and worse on Azithromycin.

Most PANDAS kids do well on Azithromycin however. It gets intracellular strep, is anti-inflammatory, and immune modulating.

 

Another Dr. you might consider is Rosario Trifiletti (sp?). He's in Neward NJ. He's a neurologist who is knowledgeable about both PANDAS and tourettes. http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

[ad_ccl]

Hi Williams dad,

 

Just want to give you some hope....my belief is that these kids do grow out of PANDAS - and the key is to reduce the tics until that happens, by dealing with their immune system. These kids have messed up immune systems - and things that they used to be able to tolerate they can no longer - food sensitivities, environmental sensitivities, lighting. Think of their immune system as a bucket - the strep infection has filled it up - so the other things that used to be managed in small doses now cause the bucket to spill. Our son had a sudden and severe onset of tics at age 6 - he is now 10. He is currently on azithromycin and doing well (last 2 years) previously was on amoxycillin - early on we also saw a naturopath and did food sensitivity testing - and removed those foods listed on his test - we were shocked to find he was sensitive to milk - which he drank tons of. Once off - he improved. We also removed other foods but have reintroduced them without a problem. There are certain supplements that we have found have helped our son as well - he used to take tons of different supplements but now he is strong, healthy and eating well so really just gets a multi and fish oil. Our son does still have tics at times but they are minimal and no one other than us notices. He can still be triggered by things in the environment - yesterday he played in the leaves and his eyes were ticcing in the evening and he said they were stinging. My guess is he will wake up this morning and be fine. On azith my son got better within days. He now takes it once every 5 days but if he is exposed to strep or other viral illnesses his tics can increase - probably once every 3-4 months we have to give him a round of azith - 5 days in a row - and that settles things right down again - it has an immuno-modulating effect. I researched non stop too - and took the info in to doctors and advocated for the antibiotics. 4 years ago a lot less was known about PANDAS - there is so much more info now. Good Luck - you will get lots of support here. We have all been where you are now.

[Williams Dad]

There are some signs off OCD. His mother teaches wear he goes to preschool. He used to love going, he was actually the one helping other kids that would cry when they were dropped off for school. Now he is the one crying when his mother leaves. He had to stay right beside his teacher all day.(not leave her side) He is always asking me if I have to go to work . It is not severe though, he does end up calming down. Video games also makes he tic like crazy. NO urinary problems at all. As far a food sensitivity, he has always been a picky eater, like myself. He does have some mood swings but not bad , (typical child too me). The most of the time he is very mild mannered.

 

Something that might have triggered this, is the surgery he had with his tonsils. I have noticed a big difference in him since the surgery. But you are right, all of your cases seem much worse than Williams, but there are signs. I was just thinking it could be in the early stages. Just because of all the strep infections we have had since last February. At Least 2 times a mouth we all are diagnosed. I don't think we are getting rid of it at all. Plus we have been taking antibiotics every month , either Agmenten or Zithromax. With just a week or 2 in between.

 

With all the strep and the recent ticing all the time. That is what brought me here. Am I reading into this situation to much? Very possible. Should I be posting in just the Tourette's forum, that could be possible to.

I just don't know what to do or where to go to help him.

 

I really appreciate all your suggestions. I love how all of you are sticking together , you all are amazingly strong people.

 

I will be looking for a DAN Dr. I know one of my wife's friends sons was just recently diagnosed with Autism. Maybe he can help. But first the trip to the neurologist is first.

 

 

Thank you all very much for the replies. Like is said you all will forever be in my debt. AND Prayers

 

Williams Dad

[ad_ccl]

separation anxiety is big with PANDAS kids.

Video games and TV were a hug trigger for my son. We did a trial of turning off all tvs etc years ago - and he did great. He can tolerate LCD tvs - but florescent lights were terrible for him at school - the school still reduces lighting for him. Again - prior to PANDAS he had not problems with the lights or tv - but once his immune system was attacked - and not working normally things that used to be fine could no longer be tolerated.

[kim]

Greg,

 

You mentioned the flu shot in one of your posts. Did you see any increase in symptoms after that shot? Do you have any idea if it was a thimerosal/mercury containing vaccine?

 

My boys had tons of strep, positive swabs with no symptoms (mostly youngest son) was said to be a carrier. Sometimes 2 or 3 rounds of anti biotics to get a negative culture, etc. I do not really consider them PANDAS. I have seen the "demon" behaviors that others have described, however only twice. Once with each son. This is not normal "I don't feel good, so I'm acting up," stuff, it's totally out of character scarey behaviors. The one time this happened with my oldest son, however was not strep related that I know of, altho I wish I would have had him cultured at the time, it was when I believe his histamine levels were off the charts. He has sensitivities to wheat and many seasonal allergies. Zyrtec helped him greatly. My youngest son has also had the frequent peeing thing sometimes with, sometimes without strep. Recently, he had "bothersome thoughts" during a round of strep with what we think was a horrible explosive stomach virus at the same time. My oldest son also had a pretty bad tic flair up of headshaking and teeth tonge tics, after a staph infection (hospital acquired and more than likely MRSA-altho the culture didn't specify).

 

I think it's a good idea for you to keep track of your son's symptoms in relationship to virus, any known allergies (seasonal), etc. not just strep. I feel for some kids the strep connection IS explosive, abrupt and undeniable, with my boys (ages 12 and almost 16) the abrupt and explosive criteria isn't there in a striking way.

 

 

Greg, you said that you and your son are picky eaters. That's an area that I have seen very little progress in with my youngest son. He would still exist on crackers and pizza (as another mom recently posted about her son) and anything sweet that he can get his hands on. He is very content and compliant when he gets his sugar/carb fix, but he has gut problems if we aren't pretty diligent with supplements and limiting his junk foods. He avoids protein foods. Currently he eats steamed shrimp and moz cheeze and a little milk (souces of protein). NO meat, eggs, etc. Drives me crazy. Also, I'm wondering if your son is a gagger? I have been trying to figure out for years if my sons eating habits are sensory related, a biological thing, or a combination. Any thoughts?

[Caryn]

Greg,

I will preface by saying we do not have a Pandas child. I do agree with Kim that you should look at a variety of factors that may be contributing to the condition. Have you gotten in touch with a Dan doctor? (Defeat Autism Now)--- they would have experience in the kinds of testing required for a holistic view of things, especially if you don't live in the proximity of a PANDAS expert. Aside from the obvious strep trigger, you will want to test for heavy metal toxicity, food allergies/intolerances, presence of candida, and an overall CBC. There may be digestive issues that are related to the underlying problem. Super bugs are becoming a real problem in our generation, and strep is one of them.

We saw our pediatrician, an eye doctor, a naturopath, a pediatric neurologist and none helped us like the Dan Doctor did. Test, test, test. Each child who tics has different underlying triggers. I believe as Kim does, that there can be multiple triggers.

It would also be beneficial to get an idea of the extended family's inherited health issues. What runs in your family, your wife's? This may also help point to possible answers or at the very least, give you ideas of what to test for.

All the best--

Caryn

[michele]

Hi. Sorry I missed your post yesterday. I am also from Ohio. NE specifically Akron/Canton airport. Where are you located? We have seen many Dr.'s in Ohio and none of them except the DAN! Dr. were willing to diagnose and treat the immune issues. Look up Dr. Demio he is in Cleve and Columbus and is one of the leaders in the DAN! community president of Autism International group and speaks monthly on Autism 1 radio. http://www.drdemio.com/ We are lucky to have him in Ohio.

 

The only thing with this DAN! approach is the medical community will not accept his testing or way he treats. In fact they will not find it backed with enough research. Usually it is all paid out of pocket, although some insurance companies will reimburse you. He will recommend diet first GF/CFand then there are alot of supplements to give to your kid everyday. The tests are amazing and you will find out alot about your child's body and what is off. It is super interesting. Ours was immune related so we had to treat the yeast, and heavy metals.

 

We also go to Cleve Clinic to a tic neurologist Dr. Erenberg who is awesome but doesn't believe in PANDAS. He treats the tics, emotional issues and anxiety that goes along with a tic disorder. Basically those are treated with meds. He is known as the Grandfather of tic disorders so he knows his stuff.

 

My son was diagnosed with PANDAS by Tanya Murphy (leading PANDAS researcher and psychiatrist)in Florida last year. She was great but is too far to see regularly. I have been able to email her though. She recommended antibiotics during strep exposures. We have however went on them long term right now and take Omnicef daily. I had to get an immunologist to prescribe them. He is Melvin Berger at University Hospital. I think he may be doing research at Case now though. He however did not have experience with PANDAS either. Also Dr. Murphy recommended Coremega or fish oils higher DHA then EPA. She also wanted him on NAC supplement. School can be hard for these kids because of attention issues or obsessive thoughts so an attention battery test is recommend to see if they need accommodations in school.

 

Another Dr. I found in Ohio that has been a lead researcher on PANDAS and tics is Dr. D. Gilbert in Cincinnati. He is the head of the tic neurology center. I have emailed him but have not seen him yet. He would not tell me over email how he treats PANDAS. He may be a local person who would know PANDAS exists and be able to treat it. Like I said no Dr's I have seen in Ohio, and we have seen a lot, had any background on PANDAS except Dr. Demio. Dr. Gilbert may be a great one to see. He has done PANDAS grants at his hospital. Let me know what you make out. http://www.cincinnatichildrens.org/svc/fin...ald-gilbert.htm , http://www.pubmedcentral.nih.gov/articlere...i?artid=2413218

 

I had all the same questions as you initially and you are so lucky to find this place. Back when my son, then 13 months, had his first episode there was no support. I spent the first few years just denying the PANDAS until the next episode hit. We are now five years into this cycle. It is great as a dad that you are so involved in this search. My husband was in denial for many years about this disorder.

 

Also check out Yahoo groups on PANDAS. It is pretty active recently.

 

Our hope is that all our kids outgrow this disorder. I do wonder what the long term outcome will be. I wonder if they will have a lifetime of depression and ADD or Obsessive issues. Usually the tics go away after the teen years from what I've read.

 

A few tips Dr. Murphy gave me are to have their speech, and eyes, and motor skills checked. I found out last year my son was delayed in fine and gross and visual motor skills. We are in OT now twice a week. Handwriting can be hard for these kids as can be coordination. My son also has sensory issues.

 

I have learned so much from research and reading. Email me anytime michele_223@hotmail.com. Good luck in your searches.

 

All the best.

Michele

 

 

First I would like to apologize for my typing abilities and my spelling.( Very Bad).

 

My name is Greg and my wife's name is Karla. The story begins back in February. My wife,myself and both kids all started to get strep. This had been going on since then. Both of my kids and my wife had there tonsils and adenoids taken out in July to help with the strep situation. I am scheduled this December 17th to get mine out.

 

Then about 2 months ago we notice William doing the throat clearing thing. We kept telling him to stop for we feared it might became a habit. Now he is doing the eye blinking and not the throat clearing anymore. We took both kids to the doctor Monday the 13th to talk to her about the blinking and throat clearing.( And to get flu shots). The Doc said to get a eyes exam done and then mention the possibility of Tourette's. Instantly we freaked out. I then looked around the Internet and sure enough he had all the signs of TS or I should say tic disorders. Thinking about this we look back and my wife and I remember other tics he has done in the past few months. Which we thought is was William just being a kid. While playing T-ball he used to pick or pull at his face (eye lids and eye brows). Never thought of it at all. Now we see a lot of things, like: pulling the front of his shirt, blinking, constantly touching his face, taking his clothes off as soon as he gets home from preschool, touching his ears . Almost like he is itchy. Repeating phrases and so on.

 

While searching the Internet I found things about PANDAS and strep possibly linked together, with TS. I have no idea were to start. We have a eye exam today and then Monday we go to the neurologist. Then the following Monday we are going to a holistic healer. What I do know is, we all are taking meds right now for strep. (Zithromax) I have read this could be bad or good. That is were the confusion parts sets in. All I have been doing since the 13th is reading and trying to gather as much info as possible.(Complete over load) I am so exhausted, confused and of course scared.(non-stop crying) The confusion part is that I have read a lot of kids go through this and it could very well just go away with time. All the talk about transit and complex tics confusing as well.

 

Sorry for all the babbling, I just don't know what to do. I found this forum and all I can say is WOW. Everyone here is completely AWSOME. I have been reading this forum for 2 days now and decided it was time to sign up and ask some questions.

If any of you have any suggestions, you will forever be in my debt. I am completely willing and able to put as much work into this as all of you have. William is my superstar, I will do anything for either of my children.

 

Some questions

1. If diagnosed with PANDAS will he always have it?

 

2. What if I can't find a Dr. that deals with PANDAS in my area? (north west OHIO)

 

3. What if Doctors in my area don't believe in PANDAS?( William's Dr. has never herd of it)

 

4. Where do I start?

 

5. Is PANDAS tourett's

 

Looking forward to any suggestions and hearing from all of you. I also would like to thank you all in advance for your willingness to help.

 

Please fell free to e-mail me with any suggestions. Or possible give me a call.

 

Sincerely, Greg,Karla,Kate, and of course MY WILLIAM

[bmom]

Greg,

I was just wondering, when you say you have noticed a huge difference since removing his tonsils, could you tell me what? In the negative? Thank you.