thereishope

There is a definitely rise in IEP's at school. In a kindergarten class of about 90 children, I believe 15 have IEP's! They said it's the highest they ever had entering kindergarten. All those kids were identified prior to 5 years old and received services through Early Childhood. God know show many there will be by the end of the year once more children are identified as the year passes. Note..the reason for IEP's vary. They are not all autism. They comprise of any reason the child would need to receive services. OT, speech, autism, diasbilities....However, for our district, you have to be "bad off' to get services. So 15 in the start of kindergarten is very high.

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It seems like in our area, each year kids are getting hit hard with one thing. Two years ago, a lot of kids got chicken pox. Lat year, there was a lot of strep.This year it was be H1N1. Also, many parents are taking their kids to the dr as soon as they get a fever. Many docs will rule out strep while they are there. Therefore, many cases of strep will be caught rather early on and hopefully won't spread like wild fire. So, let's hope it is the year of H1N1 and not strep.I feel bad saying that, but strep is mroe devastating for us.

Sounds like me. I feel so lucky the police never got called to the house, stopped us at a store, or had child services come to check if everything was okay.. I ran to close our windows so many times when he had a PANDAS episode in spring. I kept telling my husband just to leave the windows closed, but he wouldn't. Boy, can my son get loud!

I think getting the test done is the best thing. Otherwise every time he does something "odd" or PANDAS-like you will have a panic attack. And like others said, if the test comes back and indicates anything...you are catching it soon before real damage is done. Keep us updated.

I've had many bad conversations with pediatricians on the phone. They like to think they know what they are talking about, but they dont. They won't actually listen. I think they get a power kick out of it. Even after 3 times having my son get OCD and other PANDAS behaviors come with a + strep test, then begin to improve with antibiotics the ped STILL suggested he was just bipolar. No matter how much I try to reason, there is no getting through to some of them. ps...he's no longer my son's pediatrician.

Since you have boy/girl twins, they may develop in different patterns as well. At times, one twin is "stronger" at developing than the other. Let me give some basic kid info on my kids...I have a 3 yr old girl, 6 yr old boy (PANDAS), 8 yr old boy. As my girl gets older, I see she is strong minded and more definite in her ways than the boys were.She could care less what I have to say. My boys were easier than their sister. But the boys would have things like non PANDAS meltdowns, night terrors, and even my non PANDAS son around the age of 1-2 yrs old would line his cars up, line up shoes, etc. I also do see OCD tendencies in my non PANDAS son, but they are nothing to be concerned about. I have had times since my 6 yr olds PANDAS diagnosis, where I see behaviors in my 8 yr old that I would feak out if I saw my 6 yr old doing. But that also shows me that some of my PANDAS son's behaviors are just a child being a child. It is so hard to distinguish behaviors at times.

Each episode is different so it may be a different response time for each episode as well. How close did the episodes occur? That could affect how long it takes to see any improvement.

My son had both rages and meltdowns. What I called meltdowns were "moments" of (lack of a better word) insanity that would last up to 2-3 hours at their longest, but weren't as physical or agressive. A lot of loud screaming, crying, physically melting down to the floor. He'd have the look of fear, sadness,and confusion combined. It takes a lot out of them.

I am speechless. I just can't believe a phone call or explanation has not been given. Please keep us updated.

When my son has strep, his symptoms will continue to worsen until about a week of being on antibiotics. Then the very slow process of recovery begins. With each episode, they don't necessarily get worse. He's had PANDAS surface 3 times. The second time was worse than the third. But recovery took longer for the third one.

My son has ripped my clothes too. He's pulled my hair very hard. He has also tried to strangle me,and himself, with his hands. I'm trying to remember his rages. Thankfully, it's been months. I don't think he was very verbal during them. Maybe more animalistic sounds like grunt and roars. They do seem to get added strength too. Probably from the adrenaline rush.

I tried charts for my son. Since he can't read yet, I drew a picture of clothes, a picture of breakfast, a picture of the toilet. Well, he'd grab a pencil and draw a picture of the tv, a picture of toys, etc. I tried rewards too, didn't work. I was so frustrated! I tried picking clothes out with him a night just to find in the morning he no longer wanted to wear what he chose. Even though he ate applesauce every morning, he'd stare at the fridge for 1/2 hour. In my son's case, I really had to let his body just heal and there wasn't much I could do. I did find keeping in routine on the weekends helped. At first, I had the mentality that it was days off so he deserved the break. But I also felt defeated when it was noon on weekends and he was just finishing breakfast and still in jammies. Also, Mondays would end up being very hard too. Just try different strategies and see what works for you. You may have to give each strategy a full week or so to see if it works. Don't expect anything to work overnight. But if it does...that's great too!

Yes. My son looked like a zombie with those dark circles. I noticed they were there, but when I got his 5 yr pics back, it was so bad. I was so mad at myself that this child looked so sick and I didn't see it even more. At the time of the pic, he was in a PANDAS episode but we didn't even know he had an active strep infection yet. As for color of skin...my son is so light colored to begin with. He would be the most fair boy you'd probably ever see. I keep meaning to somehow post his pic of what he looked like during his first PANDAS episode before we knew what we were facing. Haven't done that yet. My scanner isn't working right.

That morning rage is hard to get out of. The child is feeling so much and can't interpret all of it. There's a lot going on. Eating breakfast, getting dressed....Then in the mroning there is always a sense of stress in the air. As a parent, you want your child ready on time. You think the morning is going well, then...BAM. Then you try not to stress, but the parental anxiety and sense of possible defeat is in the air. All I can say is keep trying. At one point, I was waking my son up at 6:15am to be ready by 9am. That way I had time for meltdowns to occur. On weekends, stay in the same schedule. Even if it means you go for a walk or drive in the car at the time you'd be leaving for school, just so she stays in routine. Consider pulling her out of school as NOT being an option right now. She's doing wonderful. She can do this. You can do this. You're in the homestretch.

Glad to hear everyone's health is returning. I was the same...scared of H1N1, but glad we got it over with.

My son ate an applesauce cup for breakfast for months. It had to be Mott's Healthy Harvest strawberry. When they changed the packaging, he was not very happy about that. Even after I considered him recovered, that's what he continued to eat. Then maybe a month ago, he suddenly started to vary his breakfast out of no where on his own. Now it's different every day. He still does go for that applesauce now and then, but it not out of necessity.

From your mouth to God's ears. Now if doctors would realize THEY are not God.

I'd just like to add to the newcomers that there is a pinned thread at the very topic of the initial topic board. In that thread you will see a lot of helpful info including a list of some doctors, links to studies, and more. you can also visit www.pandasnetwork.org for more info on PANDAS. Pass that website info onto your doctor for viewing.

My son no longer is a milk drinker. It started during a PANDAS episode when he'd only drink apple juice. Even after the PANDAS episodes ended, this new aversion to milk stayed. I've decided not to push it and to trust that his body is telling him something. That milk isn't right for him right now. He drinks maybe 1-2 half cups of milk a week.

I tried Claritin. It works for my non PANDAS son fine. For my PANDAS son, it worked at first but on day 11 of use, he was bouncing off the walls and EXTREMELY hyper. We switched to dye free Benadryl. He's a tad sleepy the first day, but then fine. It works great with him.

What does strep look like? In my kids, strep looks like a healthy throat, no swelling,no spots, no streaks, no fever, and w/ my 2 non PANDAS kids...you have smile and laughs while taking them to the dr to get swabbed. My PANDAS son only symptoms are his PANDAS symptoms.

My son was a big baby, then when he entered toddlerhood, he leveled off into maybe the 50th percentile, and now he is in the 25th (?) percentile. I'm not concerned about the percentiles right now because I think some is genetic w/ us. My 8 yr old is tall and skinny and it looks like my 6 yr old will remain the same too. Can't say the same for my 3 yr old girl My 8 yr old son (non PANDAS) weighs maybe 65 My 6 yr old PANDAS son weighs about 43-44 pounds Both are in the 95 percentile for height. My kids have alway been picky. when my 6 yr old went into PANDAS episodes his eating was greatly affected directly by PANDAS. But, I think for him, it turned into habit post PANDAS episode. I think if I work at it, I maybe able to fix some of what went wrong in terms of the decrease in food options. So, I guess I can say PANDAS affects his food intake during an episode but I don't think PANDAS is controling what food he chooses now. If that makes sense. When he gets soemthing he likes, he can pack it away w/o me asking. Even lately, he's asking for seconds on things I never thought he would ask for.

You can request that the school tells you if someone in the grade has a certain virus. My kids' school will call me if someone in the grade has strep. They will not say which teacher though, just someone in kindergarten. There are 4 kindergarten classes. However, I don't think they are technically suppose to . Now that swine flu has hit, the do post on their website if someone in the school is a probable case but cannot say what the grade it is even due to privacy laws. So, just go in there very polite and calm. The nicer you appear, the more they will bend the rules for you.

Could there be some odd reason she cannot consult a doctor in a different country? It's just bizzare. She consulted with you on the phone, agreed, then this. Have you emailed Dr K? I'm sorry but if she cannot follow through on the phone call, she should refund your money. As for Ibruprofen, some (including myself) find that it brings down enough inflamation down on the basal ganglia to see some improvement in symptoms. As for dosing, I would suggest calling your dr or myabe someone else on here can advise you. The bottle I have says one thing, but the dr said the bottles are conservative and I can give my son an extra 1/2 tsp than what the bottle.says. My son only weights 43 pounds. He takes 2 tsp.