bmom

Thanks for updating Pat as I am trying to see how these IVIG kids do. We have three more weeks until my son goes in. I am hoping "Worried Dad" posts as well soon. Something I have been thinking about, with the IVIG, do you think it would fix leaky gut and toxin overload? I am not sure of it helping the digestive system, but I was thinking perhaps get rid of the Mercury? What do you think? Let me know if you ask your doctor as I am thinking a lot about the mercury lately too. Also, just wondering if Gaby is still tic free and been since the 2nd day?

Thank you for taking the time to type that all in. Does it contain a company name or contact? Just wondering if I took info. to DAN doc if they could do it.

Thanks Caryn, I believe you are right. Her son recovered from Autism and now her son and daughter have possible PANDAS. I emailed her so perhaps she will respond. Thank you.

I have been reading through her blog. It sounds like she believes that both of her children have PANDAS possibly due to face tics. At one time she talks about a program that elimaneted them- enzymes, immune booster and homeopathic med. Do you know if they are still tic free and what her program is? She also talks about detox at one point.

Along with the dyslexia info., I am curious if handedness matters of children with PANDAS. My son has always had trouble with handwriting. He didn't even choose his hand for writing until Kindergarten. He writes with right, yet bats and things with left. My daughter is left handed. My husband is left handed and has mild tics. I noticed on a questionare that a psychiatrist was doing on Tourettes that she was talking about handedness. Could you tell me what hand your child writes with and if they had trouble deciding?

That is funny. My husband has tics. They are mild. I have come to believe that it is likely he had TS as a child. He did not tic or know anything about it except that he had some "habits" as a child that his family would say stop that about. His mother took him to the doctor and he said it was caused from stress. His tics started to return some in his 30s. He has a stressful job and I have read that 30's sometimes they do return some. Anyway, I also have thought about the diluted idea. Although when I started to look into my family, I have found some interesting stuff related to autoimmune that I can't rule out my family as part of the problem. Darn it!! I have decided that my son is probably PANDAS as my husband tics and my grandma had rheumatic fever and possibly some PANDAS as well. He was an asthma, allergy, sick kid and my daughter is really the opposite. He had many cases of strep and my daughter had one. My husband had infections, sinus etc as a child. I am just trying to figure out if there is a connection with these and hoping my daughter will be different as her immune system seems so much better.

Thank you. Do you feel that your boys had evenly matched severity of tics? Or were they both pretty consistent and even?

Lynsey, Can you tell me a little bit about your sons health prior to tics? Did they have many infections, allergies, asthma, bouts of strep throat at all? Infections such as ear, pneumonia?

Worried Dad, Wonderful!!!! I am happy to hear that. Could you tell me what antibiotic Dr. K put your son on post IVIG?

Pat, I have a question on your daughter: The tics she was doing, were they frequent like tourettes and did they ever change or always stay the same. I know you mentioned her hands in a claw. My son does this or a hand clench. He also does hard blinks and small cough, but they have changed over the last few months and I was just wondering about your daughters as we will be doing IVIG soon too. Also, did you ever notice the dilated eyes and have these gone away?

Thanks for keeping us updated Pat. I pray that you never have to worry about this again.

Yes, thank you. I have gone through Claire's posts. They are very informative. Even though I know that photosensitivity is a factor in making my son tic worse, it is not his main component. He has been screen free for 7 months, and he still tics, tics, tics, some days. Yet when those things are incorporated, it makes the situation worse.

My latest thinking on the ticcing is somehow it is related to seizures. I watch my son tic when he is exposed to light, and I know that light causes some people seizures and I have to think that they are tied together somehow. Maybe it is a different part of the brain, but I do believe that they are related. Also, some people tic more while on the cell phone which has also been implicated with some seizures.

Although I still think it is "the turning back of pages", I had one other thought. Some PANDAS parents have trouble with probiotics that contain the strep strain. Perhaps look at what bacteria it has in it and see if strep something is in it. I know that Dr. K has experienced this before though and perhaps it is a good sign that nerves are repairing old damage. I dont think the antibiotic would combat this reaction.

It really does sound like the "turning back the pages" that Dr. K discusses. He told me it can go back to old behaviors that haven't been seen in awhile and only lasts a short time. I could be wrong though. Have you emailed Dr. K? He usually responds to my email within an hour or so. I am glad to hear the other behaviors seemed to have stopped. (I am the one who spoke with you on the phone the other day). Please keep us updated and I hope this other stuff also goes quickly.

Could anyone list the side effects and dangers of IVIG? I know that some have flu symptoms during the process, but what else are the side effects and dangers?

Just want to say thank you Lynsey. Your post and info. has helped greatly. You sound much like me. I depend on my mom, prayer, and sometimes a good cry!!!

One more question Lynsey as I appreciate your answers so much and I am fully in that worry mode now- I keep thinking one day I will go without worrying every second about this. Do you have any other children? I have a daughter and I am hoping we can make it without her having problems.

Thank you for the post. I do have a few questions. Can you tell me if there was the worst years and when it got better age wise? Did you ever have to resort to meds even for a short time? Were there different triggers for your boys or the same?

Caryn, I wanted to respond to your post as I have done many things to build my sons immune system. When this all started a year and a half ago, I tried many things talked about here. I started with the allergy- removed dust, put allergy proof bedding on, desenctized him through a natropath, air purifier in bedroom (the best and not cheap), allergy testing and even got rid of the family dog. I also started vitamins. This did not help his tics. They died down on their own after his illness. I spent the year reading and building his immune. We had hair testing to determine what minerals and vitamins he was low in. We supplemented these. Repeated the test to see if they were coming up. Yes, they were normal now. He is on dairy free and reduced gluten. He seemed to do ok with all of this- a little ticcing here and there with illness so perhaps all of these things helped some. By the way, he was on gluten free for awhile too. Well, he was not on antibiotic and I did not want to have to do this. He was doing ok with out it. We even had strep go through our house once and he got it. He started the frequent urination, but one round of antibiotics and no problems after. Well, then I got strep in March. He didn't even get it, but the exposure started him up. He started up with major ticcing and this time around he got the separation, fears and all that goes with it. We did several rounds of antibiotic and have still implemented vitamins, epsom salt baths, all I could think of. He has been ticcing and has not been able to watch tv or video games in all these months later as these make things even worse. He still has quite a few tics even though he is not watching tv. We do accupuncture and my sons symptoms get activated with even a simple cold. Just when things start dying down, here we go again. Yes, we still do no artificial food as well. Perhaps some of these things have helped overall, but the truth is when he is exposed to strep, everything goes bad and now we can not get it back on track. I am glad that you found the answer for your son by a simple diet approach. My approach has been extensive with food elimanation to boot. I think my sons enemy is strep. His immune system has trouble with it. We have to be proactive to prevent that as we have clearly seen and have paid the consequences by not. I can tell you that some of these things showed a small difference, but the only thing that clearly showed a reduction in symptoms, as they were getting way worse, was antibiotic. It was immediate and substantial. Believe me, if diet or anything else was the answer, we would not go this route for my son. It is a major intervention and expense. My son means everything to me and of course that is not a big deal, but we would not do it if not needed for him and his PANDAS symptoms.

In my sons case, the first episode we had lasted two months of continuous ticcing then dropped of tic by tic until no ticcing. We spent a good part of the year like that with the exception of one illness which ticcing lasted 6 weeks. Well, now episode 2. Since March when I had strep, he has had wax and wane with weeks of no ticcing then right back to ticcing. The last 3 weeks after a simple cold has brought continuous ticcing that has changed.

Yes, there was one day my son had frequent urination and a sore throat. I took him into urgent care. They tested him for bladder infection and strep. Strep was positive and he was placed on antibiotics. The frequent urination stopped while on antibiotics and I thought it must have cleared the bladder infection, but the hospital called a few days later and the bladder came back negative-no infection. So I guess it was the strep causing this reaction and once the strep was gone, the urination stopped.

I thought of 2 other things: PANDAS children can have trouble with vaccinations (and I am not diagnosing your child (ha, ha) as do other children with tics. Also, could you do a titer test and then a round of antibiotics and then another titer test to see if they went down? In the beginning, my son was not on continual antibiotics and I would have his titers tested. Once in awhile, I could convince his pediatrician or DO to prescribe antibiotics and there would be a drop during that time (with Augmentin and Azith.) and then not a drop while off. This was a little experiment I did to determine if he was PANDAS. I just thought it was important to convince myself which route to go with him.

Believe me, I do understand your dilema with this as I have been going back and forth with it for over a year. Hmm.. could you schedule and appointment with an ENT to look at her tonsils and see if they are enlarged and possibly harboring strep? Also, get another titer test and see if the titers have gone down from the time you tested her before? My son was a dramatic start although he had a few days of ticcing here and there in childhood (which by the way Dr. K says happens with quite a few Pandas children). Apparently some kids have a build up with tics, not my son. It came on and he was ticcing every few seconds and with many tics. That is dramatic. I guess what I have decided- I am going to investigate and go the distance with this PANDAS thing. I have his titers tested every other month-and they are going down even though always considered normal. Also, I am trying him on antibiotics - I have seen some improvement although not stopped completely, and I am probably going to have him do IVIG as his symptoms seem to get worse with each illness and I want to prevent that. So, what I am saying is I think it is important to rule out PANDAS. Maybe the ENT could culture her sample and see if strep grows. I would want to make sure the strep is gone if I were you just to be cautious. Hope this helps.

How about a phone consult with Dr. K? He can not prescribe anything out of state, but you could go over history and maybe get an idea of what your options are. Of course, people have mixed ideas on him and he has said that Tourettes is most likely untreated PANDAS. So, take it for what it is. I asked him once if there was any way to tell the difference. His response was if it was a sudden onset, it is most likely PANDAS.