thereishope

I had seat belt problems, but the opposite. At the time, he was in preschool and getting ready for kindergarten and we had to prep him for the school bus that does not have seat belts. The thought caused such anxiety in him. In his mind how could he need a seatbelt so bad in the family car but not on the bus. Thank God, he was out of his exacerbation by the time kindergarten strated and we had no issues. But, boy, was I a nervous wreck. All I kept thinking is how is he goign to commute to and from school. He also had OCD related to his seatbelt. It needed to be on a certain way, when he took it off, he fussed with it over and over until it was just right. It took a very long time to get in and out of the car. That one I had to eventually address with ERP. That one did not go away on its own.

Honestly, I would not have him visit. When I broke my toe, for the next month or so, I had to hear over and over, "is my bone broken? am I going to be okay, mom?". That association is common with OCD. You may think you are assuring him that you are okay, but may be setting him up for worrying about his own life and safety. You cannot control what else he may see at the hopsital. There are a lot of machines and not to mention virus and bacteria. Also, if he is prone to tantrums and meltdowns, you may get one when it's time for him to leave. You can call him numerous times, write him a note, or have someone bring a digital camera and take your pic at the hospital to show him and prove you are fine.

My nearly 9 year old gets that ( a prickly heat type rash) when he starts to outgrow his underwear. At that age, kids don't think of telling parents they are getting tight. Consider getting her some new ones and getting a size up.

Welcome. Just wanted to share a similarity. My son out of no where would say "BOO! Did I scare you?". I have no idea why he did that so much. Looking back, perhaps there were times he wanted to share a different thought and just couldn't. That phrase perhaps was used as the replacement. Or he used it when he felt awkward. As for the possible fight with doctors. Always try to get through to them, but ultimately, know you don't have to stay with that doctor. I had problems with my ped (the whole practice I had problems with) and with my son's neurologist.

mrigsby, Know that you are no longer alone in this. Even though it is via the computer and internet, you have fund an extended family here and everyone is here to support you and help. I was in the same boat as you. My son was sick. No family except for my husband and kids lived close.Barely anyone asked how he was doing even though they knew he was bad off. I actually got negative remarks from some or heavy sighs when when they were around my son. My parents are both deceased. I truly felt alone. You go through times of feeling desperate and lost. But then at some point, you will have an epiphany and the strength will come. You must know in your heart that your child will get better. That is the driving force. Know it is okay to have times of depression. Allow yourself to break down and cry. I had my share of panic attacks. You may feel you are losing your sanity, but it'll somehow get back....hopefully and eventually:) It's like you're in the middle of a war right now and you need to fight for you and your child to survive.

I'm confused. I remember others saying he took their kids off abx and recently I've been reading more posts of people who have gone to him early on in illness and they finish a script w/o a proph, but I guess I never quite put it all together. I just assumed he'd keep kids on proph abx. Does he take them off to just what happens then eventually puts them back on? I'm confused. Hopefully, some more past patients will post about it. Do they get their long term abx from someone else?

How old is she? Also, you can go to google images and pull up pics of anal strep so you can compare the rash. I once did that, and there's ones of a baby's bottom so you're not looking at an adult's bottom or anything.

I just wanted to add that my son has had a flare up happen post viral illness. When he had H1N1, it didn't happen until 3 days post fever. That surprised me because prior to that, I saw flare up during viruses. Just goes to show that when you think you have it figured out, something changes. I've also read others who have commented on their child being seemingly "normal' during the virus.

Well, Faith, you think he doesn't get sick. I know you read this forum a lot. So many PANDAS kids react odd to being ill, or I should say they don't react as a doctor assumes they should. Example, a lot don't get symptoms of strep. If not for PANDAS, many parents would have never entered a ped's office for a strep test. I've read posts about kids who went for allergy testing and the parents find out the child is highly allergic to things like pets. They own pets and the child never exhibiting the "normal" allergic response. When it comes to other ailments, it seems PANDAS kids react different than expected. When my son croup, he never even had a cough. I took him because his voice was high pitch for a week. Also, to my knowledge, prior to 5 years old, all I can recall my son having is maybe 2 ear infections and that single incidence with croup. So don't let lack of recurring illness or you not knowing about illness deter you from looking into PANDAS further. You've come this far, don't give up. Also, for other's reading dut's post, a child can also get strep on their skin which may look like a rash or blisters and girl's can get vaginal strep. At least, I don't have the vaginal strep to worry about w/ a boy!

Boy, I wish I could find this, but I think someone once said that when the immune system kicks in (even if it's not strep), those bad strep antibodies are still released in a lower form. That's why we see exacerbations with other illness. But I may be totally quoting that wrong. I'm sure someone will correct me if I am totally off base. I really need to keep track of the quotes that interest me. Isn't 3 1/2 young for TS to surface? But it wouldn't be too young for PANDAS. I do know of 2 people in which the child's original trigger was a staph infection, not strep. So, there is a possibility that your child's original trigger could have been something else besides strep too.

Did you request anything else? You can either request a change now or you can do the 14 day trial of penicillan then if there is no improvement, tell him you'd like to try a stronger med and provide him with the article about resistent strep and needing stronger meds than pen and amox. Or you may even see some improvement on the penicillan and that would convince him to do more.

Okay. I'm going to throw a few things out here. All of these things are going to be jumbled together, so I apologize. You say you remember he had strep once. What age? Were the tics present before strep? If so, about how long? This is just a fyi, in case you are also looking for the devil's advocate in diagnosing TS instead of PANDAS. The psychiatrist told me that with clinical, classic OCD, even when the brain heats up a little, the OCD increases for the time being. So, if it was TS, it may be the same.A worsening after the illness that had a temp increase. How long after being ill, do you see an increase in anything that would be considered "PANDAS-like"? As for the sore throat vs no +strep. Well, that can happen. People can have sore throats w/o it being strep. Now, my doctor (not my child's ped) once gave me a strep test and everything came back negative. He said he was convinced it was strep and gave me meds anyway. So, I don't know about the clean cut "if the test comes back negative, it's definitely not strep" theory. Have you cleared him of strep in other places? How is the cousin feeling? Did they ever take him to the dr? Okay. I think that's enough questions.

Allergies is a trigger for my son. Shortly after his third strep triggered exacerbation, he had a big setback. It sent us to the dr for a strep test (came back negative) and then on our way to the psychiatrist and psychologist. Then we realized it was allergies. His only symptom was very red eyes. To the point there was no white in them. The worsening in PANDAS symptoms preceded the eyes only by a matter of days. Once I got the red eyes under control with allergy meds, the behaviors were more calmer and we were back on the road to recovery.

I think in my son, my gut tells me he is genetically susceptible to it, then he must have come into contact with the right strain. There may be other things that weakened his body as well to set him up for it, but I don't know that either. He was never a sick child. Maybe 2 ear infections and croup once by the age of 5. He did have a reaction to the chicken pox vaccine. That's the only red flag I can think of. I know I will never really know how this all came about. It's just sad to sometimes think...if I just picked a diffrenet school, none of this may have happened.....

A party celebrating health and recovery would be something wonderful to strive for. But I'm so darn paranoid now, I'd be scared to have him in a room with kids that are known for being asymptomatic with strep. I wonder if the paranoia and fear will ever go away. I don't keep in a bubble, but a do worry.

You see where I was going with that. If he ticced at all as a child, he may have a defensive measure about it. If he ticced, he sees what you're doing as against him. That something was/is wrong with him. He also would face the fear that he may be the one responsible for his son's suffering. Not that anyone should feel like that, but some peole do. You would think he'd remember ticcing. So, maybe he blocked it out of memory or he decided it's something he doesn't want to live through (even through memory) again. Even if your son's main symptom is a tic, I'm assuming you have mentioned OCD as a PANDAS symptom. You see how your husband may make the connection to himself? You husband may have a lot of internal struggle going on right now.

You're deduction makes total sense to me. I just tend to look at all the reasons that might be thrown at you by someone. I could see someone asking, well, something must be in the water making it happen. But, since they live a far enough distance from each other, one cannot argue anything like that. I wonder how many of us can pin point where their child came into conatct with this strain. I assumed it was at my son's new school. He had started preschool and w/in a week he had PANDAS. But, then, when read about your experience and it was a delayed reaction w/ PANDAS symptoms surfacing, it makes me think if there could be a differnet source for my son. But my memory of what we did months prior to Sept 2008 is such a blur.

I never really knew what a sinus infection would present like, so I never asked if it was a possibility. Now, I just found out about a month ago, he has/had one. All he had was a cold that came and went on and off for a month. I only questioned a sinus infection because I have read that a lot of PANDAS kids get them. He had a slightly runny nose and his voice sounded like there was inflammation. He wasn't bothered by it at all. So, in hindsight, upon knowing how it may present in him, he may have had sinus infections in the past and I always dismissed it as a stubborn cold. He just finished Augmentin for it and it seems like he is doing a lot better. No more runny nose and his voice sounds fine.

Oooo, if you find out they lied.....O My God .Please let us know what happens. That sounds very fishy.

What kind of abx does your doctor give for a sinus infection? Mine first tried amox, then Augmentin. The Augmentin seemed to work. And I actually got longer scripts than I did for strep. I live in OH, which is a very stubborn state when it comes to abx. From what other moms have told me is an ENT will prescribe loger abx for a sinus infection because they understand it takes longer to get to that area and to clear it. With our experience w/ ENT and Immunologist- they do not prescribe the same type of antibiotic for sinus infection as they would for strep. And unfortunately, they are unable to tell what type of bacteria is in the sinuses by a CT. Is there a way to find out without surgery? That would be awesome!!! My son has already had one sinus surgery and the ENT wants to preform a very invasive surgery now- we decided against this.

I agree it's no coincidence. But has anyone suggested that there is something environmental around you causing these children's bodies to become susceptible to this, besides age? But, then, you just said that one does not live around you so that sends my wondering out the window.

I think they can do a CT scan of the sinuses to see if there is an infection hiding out. I would think the ENT would do that. If there is and abx won't get rid of it, I think they can do more invasive measures and actually go and drain the cavities and that would help the meds work better. My son had the ongoing on and off cold w/ a slightly runny nose and his voice seemed off. Like it was affected by swelling. They did say it was a sinus infection. The first abx didn't work, but the Augmentin seemed to work. But he also hasn't had many issues with abx. He just finished the script yesterday so I'm waiting to see if it creeps backs, which other moms have told me can happen after they go off the meds for it. As for the nose, if it's constantly wet and he's wiping it with his hands and sleeves, that will cause irritation. Are you putting a topial antibiotic on it? Are his hands red and rashy from wiping it?

I agree to the strain part, but I also think these children are somehow predisposed for it. Maybe for some it's genetic, some maybe not. But then what is causing so many of them to have such whacked out immune systems in such a concentrated area?

That's just unbelieveable and so sad. So, at this playdate, did any of the parents know their child was actively sick? It's just so scarey. Not only does it show that it was probably a certain strain of strep, but what made all these kids vulnerable to PANDAS in the first place? You wonder how many more kids in your area may have PANDAS and the parents are silent about the symptoms or that strain of strep is still floating around in asymptomatic children? Must be hard to feel safe. They are lucky to have you, willing to share your experience, speaking up, and help guide them in possible directions.

Unfortunately, it does seem like some have backsliding after steroids. But, at least you had a good XMas and you have more info to back up the PANDAS diagnosis. The steroid burst is so different for each child. Some have immediate improvement, some not till they are even off it, some none at all. Some have backsliding, some do not. Update us when you find out if your other child is finally clear of strep. How long did it take for you to see improvement on the steroid? And how much of a setback is he having now? Like back to square one, or just slight?