thereishope

No, my son has not done allergy shots. Luckily, his aren't bad enough (yet) to even warrant allergy testing. However, if he folows in the path of my non-PANDAS son, they will ust worsen as he gets older. Both my kids have gotten sinus infections from allergies and that worries me with my PANDAS son. I live in the Ohio Valley area and it seems the longer people live here, the worse their allergies get. Pollen and such just gets stuck in the air. That may be the same the herbal remedy I'm looking into, except the one I would get is a chewable for kids. It's Natural D Hist Jr.

Perhaps because allergies affects the immune system and when the immune system is activated PANDAS may flare? Each allergy med is different for each person. The only one I've heard on hear not to try is Singulair. My PANDAS son cannot take Claritin due to hyperactivity and it increased OCD. But this reaction was while he was still in recovery and experiencing PANDAS symptoms. Don't know how he'd react now. He actually does well with one dose of Benadryl in the am and once before bed. But, then, others do not react well to Benadryl. As for my older non-PANDAS son, he can tolerate Claritin fine, but his allergies are worse this year and I am thinking of trying to a more natural "remedy".

What antibiotic was he prior to the penn vk? I have noticed a pattern with some PANDAS kids and pennicilin They do well for 2 weeks then backslide. What is with that magical 2 weeks. Does anyone know? Just because of that patten I've seen, I'd want to take him for strep test. Usually, I have my own 3 day rule unless it's my son's hallmark meltdown which is indicative of strep. The thing is, as Peglem has explained, that you can get a false negative since he is on antibiotics. So....if your ped is off for Labor Day weekend, you can take him to a walk in if you feel you can talk your way around convincing the dr that your son needs a different med. Or allow them to do a rapid, but insist on a culture and tell them he has a history of false negative rapids as there is a 33% failure rate with rapid tests. Then ask for an antibitiotic while waiting for culture results. Now, if you are well established with a doctor that has given you antibiotics in the past and you can get into contact with now, call them. If they give you a hard time, ask for a script to get you through the weekend until you can see them on Tuesday morning. Perhaps ask for Azith sinc your son also has a history of Myco P. Why do these things happen on holiday weekends? I needed to get a hold of a dentist or doctor for my son and every is out for the entire weekend.

Kelly, if he goes a week post fever with no PANDAS symptoms, let yourself do a happy dance...and let us know too! :)It's great to see that he isn't following his usual pattern! Since he hasn't been sick since winter, his immune system has had a few months to calm down. That's wonderful!

When was the last time he was sick prior to this stomach virus? See this as a HUGE leap forward. My son was having a ramp in symptoms with any illness and allergies and now he doesn't. As for the illness itself, that exact one is going around all over. With some it's the vomitting, diarrhea, and fever and for others it's just the fever (that's the one my 2 got). Luckily, it seems to be a rather short lived virus and hopefully he will feel better soon. As you know some kids will expereince a ramp in symptoms a few days post fever so continue to keep an eye on him....I know you will Hope he feels better soon!

Thanks for responding. For some reason my audio doesn't work great on her you tube videos so I haven't been able to watch them. I'm just always cautious about promoting someone when their main connection to the PANDAS community is you tube. I don't want to aid in thrusting anyone into a spotlight or push patients her way when I truly know nothing about her. But according to what you wrote, we as a community should give her chance and, like you said, any PANDAS families that have seen her, I would love to hear their experiences. I think I will warm up to referencing her more once we start to hear first hand accounts by parents on this forum or elsewhere.If those parents wish to remain anonymous, feel free to pm me and others (like kimballot) and let us know. Maybe you can answer one more question, who is Dr MDK? I see the website but that's the extent of it. Never hear references outside of his website and those reference are rather recent. If he's seen over 50 PANDAS kids, are any on here?

Every time the phone rings when the boys are at all school, my heart drops. I'm waiting for the health aid to call and say someone in the boys' classes have strep. Even my non-PANDAS son doesn't get symptoms so if he's exposed in the classroom, I take him in to get tested.

There are other things that you mention that would fall into the PANDAS catagory. I'll pin point them and answer it from a PANDAS point of view... OCD is related to PANDAS. The fact that he was viewed as being "normal" just months prior is a red flag. Yes, stress and anxiety will defnitely worsen the symptoms of a PANDAS child. Urinary frequency is a symptoms of PANDAS. So, is depression. IF this is PANDAS (again answering from a PANDAS point of view) you cannot force that boy to do anything while in an exacerbation. They are not themselves. They have no reasoning skills left. To force them is not good. To punish is not good. As for not being able to walk, that one's got me. I think one person on here said their child couldn't walk for a while, but it's not a common PANDAS symptom. Perhaps someone else will chime in one that. Even though he was given antibiotics before would not rule out an infection still being present. Antibiotics do not always rid the body of infection. I'd be curious to know what the antibiotic was, how long the child was on an antibiotic and if ANY improvemnt in behavior occurred at the time. Was a steroid ever given to the child? I commend you for looking into this for that little boy. I know he's 9...but when their sick, they are still consider little boys to me. He is lucky to have you looking out for him. Here is a useful link on PANDAS you can look at. Perhaps you will find it useful. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265

Welcome. Read this link. The abstract doesn't say much but the title blew me away Spasmodic dysphonia in an adolescent patient with an autoimmune neurologic disorder http://www.amjoto.com/article/S0196-0709(07)00004-X/abstract Out of curiosity, did the dr ever do strep test with the original throat problems? If not, they should look into it. It's sad they viewed him as a naughty boy. Either he was overly lethargic and couldn't move and complete tasks or it was a form of ODD (Oppositional Defiance Disorder) which PANDAS kids can have. With my son, it was very frustarting.But with my son, it wasn't that he seemed that he couldn't move, but rather it was a fight for the simplest tasks and requests. One would say he was determined to "win" and whatever I said he needed to do the opposite.

If you continue to have a sore throat and it looks red, it may be best to err on the side of caution and get yourself tested. If you haven't had the whole famlily tested yet, that is suggested as well. PANDAS kids can have a worsening of symptoms from being exposed to strep, whether it be in the family or even in the classroom or playmates. Some have said that their kids will worsen when the child has a virus or when the child is exposed to a virus. If this is the case, hopefully, once the virus passes, the child will improve. You can try some Ibuprofen for the time being if the tics are bothering him. Finally, even if a child is on antibiotics, it does not protect them 100%. Yes, it helps prevent strep, but there are kids on here that have tested + for strep while taking antibiotics.

My son had no gross motor skill or fine motor skill problems with his PANDAS and he was able to overcome the residual OCD rather quick once we started to retrain his brain. Perhaps there is a connection there as to why he was able to do that.

They sell that even at Kroger now in the natural foods section.

Just something small to add....just because your child may have some residual symptoms does not mean there is brain damage (even if it may end up occurring in some children). For some (especially for the young), perhaps their brain retrained itself in the wrong way, but this is also why at some point one may want to look into CBT or ERP and start retraining the brain the correct way of thinking again.

There is a lot reference to Susan Schulman and her videos lately. But who is she? I hadn't heard of her prior to the you tube mentionings on here and she's being quoted often now.

According to my bottle, your child can get 300mg. How much motrin would it be appropriate to give a 9 year old 82 pounder?

To my knowledge the study isn't underway yet, but you can check the NIMH to see if they are recruiting. The study she is refering to, they touch base on in the recent NIMH post http://www.nimh.nih.gov/about/director/index-ocd.shtml

Yes, my PANDAS son had his tonsils out. They were not cultured. He had strep one month after surgery, but has not had it since that last infection. His last infection was March 2009. So, I don't know if the t and a helped, but I think it helps my sanity to know I've done something that might help him stay healthy. did you have them cultured...did they look odd? your ds?

Where in Ohio? Other info: Dr. Kovacevic Phone Numbers Telephone: 630.986 1010 Fax: 630.986 1015 www.webpediatrics.com Rosario R. Trifiletti, M.D. Ph.D. Child Neurology (201) 236-3876

I went to look at the survey and I have a question. How do we answer age and such? From the perspective of the one with OCD or our info as the parent? Also, does she want us to say that the child has OCD as a result of PANDAS or PITAND or does not matter?

I still have my tonsils. did you have them cultured...did they look odd?

I'm sorry you're going through this. If there is an approval number in existence, I wonder if you can get it done asap you'd find a loop hole to get it paid for by the insurance. Did you get the approval number by any chance?

As for adults and t and a, I have heard it can be a harder recovery on an adult. I have considered it just because my tonsils are on the larger size and pitted due to many bouts with tonsilitis as a child. However, I will probably never have it done since I do wonder how the recovery would be and I can't afford to be out of commission. My PANDAS son has had his tonsils out and I dont regret it. My 2 non PANDAS kids still have their tonsils and I see no reason to remove them since they do not have recurring strep. They've each had it once.

Emerson, since your tics started prior to the tick bite and at such a young age, keep pushing and searching into PANDAS too. You have a lot on your plate. I hope your mom is starting to see you need her full support and help.

I'm not that familiar with Dr Goebel. How well versed is he on PANDAS and PITAND? Since you said the tick bite coincided closely to your first onset of symptoms, I would raise a red flag for Lyme too. With either diagnosis, you should be geting antibiotics and help now. Keep us posted! edit...In your signature, you say onset was at age 2. What is it that makes you think it was at that age? Perhaps you have a double whammy...PANDAS and Lyme?

re: Pearls brand. The box claims that 100% of its potency is maintained 2 hours after gastric exposure. Also, it states that the Pearl brand can be taken with food and/or drink. They are very easy to swallow. I was suprised my 9 yr old son took it. He said it rolled down easy after he took a drink of water (they are balled shaped...like pearls and very small).