thereishope

Sorry. I reread your original post. You're from MA. Geesh. That's everything I went through. I would have sworn you lived close!

Where do you live? It's not Ohio, is it? The tummy comment, I heard too. The TS and PANDAS "expert", no prophylactic abs....Been there, done that. Sounds very familiar...

My son did have some sensory problems, but I don't know if the clothes were one of them. It makes sense to say sensory. Maybe it was the feeling of removing the clothes, how they brushed on head and skin. Who knows, maybe it was sensory all this time. He did hate having his head touched so it would make sense how having the clothes touch his head would be like nails on a chalkboard.

Yep. My son had major changing clothes issues. It's sad to say, but for awhile I had to tackle him, hold him down, and change his clothes. It was suggested it was sensory, but I don't think it was because once the clothes were on him, he was okay. He also has major issues w/ deciding what to wear, yet I could not choose his clothes for him. There were times he was changing his own clothes, but the process would take forever. When I'd check on him, he'd be sitting there naked (sometimes in the corner). Very sad sight. These were some of the reasons why he took so long getting ready in the morning. He aso had issues with getting his shoes on. As for bathing, my son once went 2 weeks w/o bathing. He was only 5 so it's not like he smelled or anything, but the bath before that he was like a wild animal. I had to strip him, carry him screaming and kicking, then have my husband hold him while he stood and I bathed him. Luckily, that extreme adversion to the bath was only that one time. I figured if I gave him enough break between baths that time, he would perhaps forget that awful experience and not freak out again.

Can you get a physician to supply a letter with an official diagnosis? That would help a lot.What I have done is contacted all teachers, slp's, etc that will come into contact with my PANDAS son and requested that they tell the office (or myself) if they have strep. I have also had a long sit down mtg w/ his teacher to explain what has happened in the past and what to look out for. To be honest with me and tell me if something questionable comes sup. Don't give him second and third cances before telling me. I have talked to the principal and asked to be told if a child in either of my chilldren's classes has strep. Since the beginning of the school yr I have gotten 2 calls. They will call only if the parent specfically says "strep" when they call in the absence.. Technically, I don't know if they are allowed to tell me anything but they do. I say that because since H1N1 surfaced, the school district has said, via email to all parents, that they cannot disclose what grade H1N1 has been reported due to privacy laws. My son has an existing IEP. PANDAS is in his medical history. They never had me supply proof, but I had his slp witness it last yr & could back me up on it. I could not get it "officially" added since the dr will not provide a letter stating diagnosis (that's a whole other story). If something happens and you cannot get a 504 or anyone doesn't want to pursue a 504 specifically for PANDAS, if your child has issues in school, maybe you can be creative and ask for an eval of that issue. Meaning, if they have sensory issue due to PANDAS, tell them you want a sensory eval. Just drop the PANDAS add on if you think it would open too much of a can of worms. Same thing for OCD. If they have OCD as a result of PANDAS, get the OCD diagnosis and pursue an IEP or 504 for OCD. The most important thing is your child gets the help they need,the space they need, etc.

A school nurse is not qualified to diagnosis a child. Oh, that makes me mad. Was she even a nurse or just a health aid? Was a district rep present? I know they are present for IEP's, don't know about 504 plans. quote name='nojo' date='Oct 24 2009, 09:18 AM' post='42308'] I have alot to say about this topic unfortunately. I had the most horrific meeting at school that I have ever had in my entire life. I went in to school for a child study team meeting to discuss 504 eligibility, explain why strep is dangerous for my daughter, ask if they could let me know when anyone in the class is positive (per a doctor's letter), explain to them how it was explained to me that we have an immune deficiency and the live H1N1 virus that they are administering to the entire school is dangerous for us. I made the mistake of going to this meeting by myself. I thought these eight educators would want to help my family in some way. Instead, this is what happened. I was told that they have never heard of PANDAS, so it doesn't exist. I explained this is why my family went to see Dr. Latimer. Not many doctors in our area have heard of it. Then the clinic nurse asked if my daughter got a fever when she got strep. I told her no, and she said "Most children get grumpy when they get strep, that is all that she has wrong with her." I replied "Maybe, but do most children have neurological damage or choreoform movement from strep?" Then, they proceeded to look at the information I had printed out from the NIH webpage. The school psychologist wanted to know if we definitely had group A strep (like does she know about group B or any other strep for that matter?) This continued on, and someone stated this sounds psychiatric, do I have psychiatric problems in my family (yes, someone really did ask me that). I re-read the name, and again explained how her brain swells and can be damaged. I tried to move the meeting along to her immune system being weak. My daughter has always had health issues, and 2 years ago, missed 6 months of school on homebound. They had to send a tutor to our house. When I told them her igg levels are low, and monthly ivig's are being recommended and we need to miss the week after the vaccine, they told me the note from Dr. Latimer wasn't good enough, and in their opinion, exposure to germs would be good for her, to build her up. (They are going to kill my child at this rate). I tried to explain again, she has severe asthma, we have already had a cold, flare up, and strep, and it is only the beginning of October. We are already falling behind. We also have food issues like many of you do. We haven't gained any weight in a year. They had the audacity to suggest maybe offering her a choice of what to eat for lunch. I told them "We are way beyond a choice of foods, I will feed her anything she will eat, and we are giving her nutritional supplements just to get calories in." In the end, they refused to meet again with me to discuss 504 eligability, or for another child study team meeting to review what them immunologist suggested. I am thoroughly disgusted. I wish I had had the presence of mind to stop the meeting, and say "No one here is qualified to diagnose my child, none of you have a medical degree. What are you able to do to keep her safe from germs at school and what modifications can we make for her when she is out." I have had to fight for her to even be allowed to even have a water bottle at school. Bring a medical advocate if one is available to you. If we decide to keep our children in school, we will be bringing a LAWYER to our next meeting. I am seriously considering homeschooling. For the record, I was a teacher(that won regional awards) that retired when I had children.

I was looking up excatly what SC was (sicne I didn't really know what it was) and noticed another famous person who had RF and SC as a child.... "American artist Andy Warhol was afflicted with rheumatic fever as a young child, and developed the symptoms of St. Vitus Dance." Thought it was interesting.

Glad to hear things are going well! It's hard when you see little things that make you stop, stare and think "is this PANDAS? Is this just my child?". You really have to get to know your child all over again. To learn what their natural quirks are, what their temperment naturally is. That's when I am happy I have an older son to "compare" my PANDAS son to. I'm actually happy (well maybe happy isn't the word) when my 8 yr old doesn't something questionable or has a tantrum. It shows me that it's ok if my PANDAS son has a moment or 2. It doesn't always mean he's sick. It reinforces that sometimes kids will be kids....even if they are a PANDAS kid.

If my son is under stress (or what stress a 6 yr old can have), I may see little PANDAS symptoms surfacing even when he is fully recovered. He wouldn't be "out of control", but I may see him backtrack a little bit. I read that the rising of blood pressure (which happens when under stress) can open up the BBB. So, I would think that would add to why PANADS symptoms return w/ stress?

I did the same. I didn't completely take it out of their diet, but I dramtically decreased it. we kept our son away from artificial sweeteners, colorings, vaccines, toxins, made sure he got plenty of rest, I agree, no dramatic changes w/in those 10 days, but I could just tell something good was happening. I really can't explain it. I think, in my son's case, the amox got rid of the strep, but there was a lot of inflammation that needed to go down or damage caused by inflammation and that's what the months of recovery was. Healing the brain.

Don't worry. I won't.

Has anyone contacted her office and outright asked if she'd prefer not to be given as a reference anymore? If no one else wants to do it, I will if someone has an email address for me.

When that happens, do you notice a virus, allergies, anything? Or whether it may have coincided with spring cleaning, dusting...anything? Like with my son, if it's virus or allergies, he improves w/o antibiotics and comes and goes quickly. Only the strep induced ones are over the top bad w/ a lengthy recovery.

Funny that's your example. He's working on /y/ right now! He had 'to' for you. He had a hard time learning how to form his mouth for it. They had to be inventive, but we found a way to teach him. We are practicing /y/ every night still.

oops.

This is his 3rd year getting speech from the school district. The majority of last year was PANDAS episode after PANDAS epsiode so progress really slowed down. He's complicated because he has odd substitutions. At first he also dropped off ends and some beginnings of words but does not have apraxia. He no longer does that, but he has to work on things that a 6 yr old should definitely have by now. I can't wait for the day when I don't have to translate for him to anyone! Vickie, not to be nosey- but how do you know its not related to PANDAS

My son watches tv shows in his head too. He also can act out a whole episode with quotes. It makes him hard to play with because he gets frustrated that I can't remember what to say.He memorizes short book after one read and things from years ago that my husband and I forgot. He's 6 and he'll remember things from 3 yrs and younger.

They now found that Mozart died from a strep infection. is he the one who cut his ear off?

Well, he's always had a speech disorder. So does my older (non PANDAS) son, but not as bad. It existed long before he had strep, long before behavior changes. He also makes good progress in speech therapy. He did have a big slow down in progress when his PANDAS symptoms were present. So I do think there's a connection there. They catagorize it as a severe phonological disorder. . Vickie, not to be nosey- but how do you know its not related to PANDAS

In my son's class, one child got a sore on her nose that was strep. And a different boy gets blister-like sores on his hands that is strep.

I don't think my son is gifted, but I have a feeling each PANDAS child as they get older will really exceed at something. They'll have a knack for an area of interest.Like for my son, he's 6 years old and in kindergarten. He's not necessarily behind, but doesn't have a real interest in learning letters, reading, etc. However,I can see he has an amazing memory. He can also look at something and dissect it with his mind. He enjoys learning things in school as oppose to singing songs and doing kindergarten like activities. As he gets older, I am interested to see what we learn about our little boy and what he can accomplish. As for any disorders. My son has a speech disorder. Not related to PANDAS.

Let me add that by day 5, I saw the worsening of symptoms start to subside. It wasn't a dramatic upswing. It's not like he was back to himself by the end of a 10 day script. But I could tell something was happening. It still was a very slow process to recover. We also took him for folow up strep test to make sure the strep was gone.

My son got amoxicillan for strep. In Cincinnati, docs only treat the strep and don't believe in preventing it with proph antibiotics,. only with t and a surgery. It's so important to remember that each child is different. I know some parents have posted saying it took 2 months of being on a strong antibiotic before they saw results. I just wanted people to see an example of a timeline in which basic amox works. I don't want anyone to continue giving it when they see no improvement and when, in fact, they need something stronger. With my son's first and third + strep test and PANDAS exacerbation, he was only given 10 days of amoxcillan. I cannot find a doctor in Cincinnati that will give him long dose prophylactic. Now, during his second episode, I did convince the ENT to continue a proph dose of amoxicillan until he had his tonsils removed. So, for his second episode of PANDAS (and his worst) he was on amox for maybe 3 months. That is also the episode when he received 5 days of prednisone. I honestly believe a child needs to be on proph antibiotics esp while recovering and a steroid rather early one is important. I witnessed it both ways to see the difference, First episode...10 days amoxicillan. Went maybe 3 weeks w/ behavior changes until we found out he had strep. At 2 months into recovery, he was 90% himself then he got strep again. Second episode...10 days amoxcillan to begin with. Changed into 3 months of amox. Given 5 days of prednisone, 5 days after + strep test. This was his worst episode w/ the severity and range of symptoms. He recovered to 100% himself in about 2 1/2 months! Third episode....10 days amox. Severity of symptoms were bad, but not as bad as episode 2. Took 5 months to get to 100% himself. And this time he had a lot of residual OCD we had to tackle. He also had 2 setbacks during recovery of his third episode due to a cold and allergies. No antibiotics given for that. I also did not have this forum during the majority of his exacerbations. I didn't know resistance to amoxicllian, what a steroid burst was, etc.I am much more knowledgable now than I was then.

One thing to consider is if something happens to your child and you need to disclose they are on the antibiotic and where you got it from. Do your reserach about what the laws are, if any. You don't want to open another can of worms down the road.

I remembered reading about joint pain before in a thread. This is what I found... http://www.latitudes.org/forums/index.php?...mp;hl=arthritis