thereishope

I'm going to give you advice from a cold perspective.... Does he have a fever? When my oldest had H1N1, he had a very bad cough that was pretty constant. When my middle osn and myself had it, we had bad congestion.That cough lasted around 2 weeks. If it is caused by a virus, can it be that the mucus is hanging out in the back of his throat and causing the snorting and coughing? Can you give im a decongestant to thin it out? But, then, does his tics get worse w/ a decongestant? Also try a non medicated saline nose spray. that may help.

I think it's sensory. During an exacerbation, it is pretty extreme for my son. If you touch his head, he must wipe it away and that leads to himself hitting his head a few times. When he takes off hat or hood, he must "flatten" and smooth his hair and fix it until it feels right. this can be his "flattening" his hair over 10 times until it feels right. He will do htis in public too with others around. He doesn't care.You cannot kiss his head either. Nor can you brush it.. btw...he has a crew cut so his hair doesn't even get messed up or pulled when brushing. He also went a very long time w/o a hair cut. Again, becasue it was a crew cut, it looked really bad for awhile. Luckily, right now, he can tolerate touching his head and he no longer has issues with removing a baseball hat. I do know when he changes his clothes he still smooth his hair out a couple times afterwards. But I "let" him. I know sometimes things just don't "feel right" with me. He only does it like once or twice. As long as it doesn't stop him from accomplishig anything else or makes him late, I think it is acceptable. I can also see the extreme positive change in him. So I currently have no concern about it. Oh, I can kiss his head now too. Sometimes I just need to do that to remind myslef he is okay now.

Our district does not notify anyone of strep. I requested that they call me if someone in the third grade or kindergarten has strep. They said they would if the called in absence is specifically strep. Because of H1N1, parents are suppose to give symtpoms of child when calling in the absence. Hopefully, that has led to less parents just saying "Jimmy doesn't feel good". Since my request at the beginning of the year, I have gotten 2 calls saying strep was in my non PANDAS son grade. Once time they did say it was in his class. One time they gave a general...strep in third grade (there are 4 third grade classes). Sicne H1N1 has hit, they have disclosed on their website probable cases of H1N1, but they have also said due to privacy laws they cannot disclose what grade or which teacher's class had it. So, as for informing you of strep, that will probably vary from state to state. But, it doesn't hurt to ask!

I don't want to make it sound I am part of a hate campaign against her. If she does something, I feel comfortable supporting, I still plan on doing so. Maybe after the "newness" of having a book goes away, she will be more open to hearing others.

Didn't the Harvey Singer post appear prior to negative publicity on this forum? She probably didn't think to look at old comments. It would kind of get lost in the page over time anyway. Okay, but now I have to watch the pages and see if that additional link gets deleted. I think she didn't realized that there was a discussion topic until yesterday when she went to post her dr list. It wasn't until that got posted, did she delete the otehrs. You know, she mustn't be that busy with the book if she has time to play fan page police. (Sorry I just couldn't resist saying that). Let me add my clause now.... I do think she is helping some people. I don't think she's a bad person. She just not handling things correctly. She needed to think a little more before acting.

I've gotten in the habit of almost every day asking my kids if someone was absent. If so, do they play a lot with that kid. The reality is most children run the chance of constantly being exposed to strep. By parents who don't take their kids to doctor, to parents who don't follow the 24 hour on abs rule, to strep carriers. I think if found out my PANADS son had a clasmate with strep, I'd freak out, but still send him to class. But, then I haven't gotten a call for his class yet. I've gotten a cal for my non PANDAS son class, though. I can be wrong with this, but someone told me it could take 3-5 from when a child actually contracts strep to when they have classic symptoms (if they are the kind that ets classic symptoms)and get the point they'd have a + strep test. Does anyone know if this is true?

Had my lightbulb moment. She doesn't want lattiudes on because of some questioning her and/or the foundation to which she is now associated with. On the Beth Alison Maloney fan page, pandas network and lattitudes was listed different than on the Saving sammy page. She had no choice but to delete both in order to get lattitudes off. It makes sense now. Ms Maloney, if you're reading this, I just answered my own question. No need to email me back.

My frustrationg is mounting. I visited her fan pages agian this morning and realized more has been deleted. I posted pandas network and lattitudes on her Beth Alison fan page under discussions. Both are gone. Only her "dr list" discussion remains. As for the Saving Sammy fan page, PANDAS network link remains, but the lattitudes link is gone. I have emailed her asking for an acceptable wording for me to repost. I explained how the foundation she endorses acknoweldges PANDAS Network and I don't see why it can't be listed. Also, I went ahead and contacted PANDAS Foundationand requested my son's photos be deleted from all emails. I did this a few days ago out of instinct. Now it is posted on the fan pages that the foundation wants pics for their website. This was after I asked them to delete mine. I do not know if the pics anyone sent for the Oprah basket, which I believe are now in posession of the foudnation, are automatically going to be put on the website or if they need each parnet to consent that. Someone need sto email them and ask. Like I said, I cannot since I have already cut ties with them.

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No questions about autoimmune disorders...even when he had his reaction, they told me it meant his body took to the vaccine well. He got a chicken pox rash 2 weeks after getting the vaccine. In hindsight, I was so stupid in earlier years.

Have you emailed Beth Maloney yet? info@savingsammy.net If you ask for her list, she'll send you all the doctors she has. Have you tried contacting the neuro directly instead of just talking to the appt desk. Your son is an established patient, you should be able to get in sooner.

Hi. Welcome! The lack of reasoning, esp during a PANDAS episode, is pretty common. I learned when that happened, you had to just let them go through it. I also did not ever punish him when it was obviously PANDAS. To me, it was out of his control. Actually his reasoning resurfacing was one of the signs for me that his PANDAS exacerbation was reaching a tail end. I remember the days whne he would raise his hand to hit, then stop in mid air and lower it or when I would say I would take a toy away and he'd pause and ask "which toy?". That wouldn't happen when PANDAS was full force.

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I read that post after I posted this. When I go on the forum, I never know if I should start on the top of topics or start where I left off on the bottom.

Last year my son was in a very hard time for Halloween. I made his costume, Ben 10, per his request. Then he started saying he didn't want it, didn't want to dress up, etc. After many days and many questions, it turned out there was one small thing he wanted changed. It wasn't what he envisioned. So, I changed it and he put it on and went trick or treating. It was a very nerve wrecking evening since I didn't know what was going to happen (he was only a couple weeks post + strep test), but we survived. I even have a picture! Granted, not smiling, but I have a picture.

When you say you only speak to the nurse...do you mean on the phone? In person, you should be seeing the neurologist. On the phone, and sometimes email, the nurse fields the conversations and acts as the liason. But you can insist that you speak directly to the dr. Just know it may be longer to get a response. It may not even be same day.

I think PANDAS appears on the wikipedia site as well. I even saw it referenced for comparison when I looked to see what SC was.

All I can say is that IF you vaccinate, at least do the shot instead of the mist. A lot of kids seem to have reactions to other live vaccinations such as chicken pox. Another I know had a slight reaction to FluMist. If you are going to do it, do the shot. I believe my kids have had H1N1. I was not planning on vaccinating anyway. Right now I don't want to mess with something that is going well. If your child does contract H1N1, I believe they will develop a natural immunity and may not get it again. Whereas, you may be looking at getting a H1N1 shot every year now. There's a lot to weigh.

Glad to hear things are well. When my son had his second strep infection , he went steroids rather quickly. Like you, I began to see a form of improvement on day 3. I have other episodes to compare my son to in which he did not receive a steroid. I can see, for my son, receiving a steroid very soon after infection is very important.

My son had his tonsils and adenoids removed in Feb 2009. He has had those higher temps since then. As recent as a month ago.

My sudden had his first sudden onset on his 5th birthday. He was diagnosed about 3 weeks later. The age does make it very hard to determine what is their age and what is PANDAS. For me, this was the case esp during recovery or when I would think I was starting to see another exacerbation surface. I truly had to get to know my child all over again. For my son, during his first PANDAS epsiode, he did have obvious OCD like excessive hand washing and a new found fear of dirt and being contaminated that I knew wasn't just a 5 yr old being a 5 yr old. I originally didn't know what to think of it. As for the other behvaior changes, I did give him more time to "get over it" thinking it was his age and it a result of all the excitement leading up to his bday. Because of that, we we didn't go to the dr sooner. He is now 6 years old.

My natural temp is in the 97 range. I'm telling you, when I reach 99 I feel like I am burning inside. I feel awful. It sounds like 99 is a fever for her. So, Pixie has a pretty consistent fever they refuse to recognize. Nice.

With my son,I've realized that increased body temp only when I've kissed his forehead to say goodbye and noticed it was warm. There was a couple times when he just wasn't acting completely "right" so I checked it and it was raised. Usually on edge or easily aggitated. But the behaviors are subtle when that happens and tends to go away on their own. I can't say I see a consistent correlation. For my son, I wonder if it's just a coincidence. But then, your son's behaviors are subtle too to the "untrained PANDAS eye", right? Hmmm. I guess I need to start documenting these increase in temp w/ what's going on and how long it takes to go back into the 98 range. It hasn't happened in awhile, though. I had a time when I was checking his temp on the upwards on 10+ times a day. I'm not that bad now. ps If his temp is on the higher and of the higher end of the 99 range, I do give Motrin just to nip any impending inflamaton in the bud. Erica, is your son fair skinned? Mine is so his cheeks do turn red and his ears turn beet red a lot. Fair skinned kids, have more sensitive skin.

Great news, worried dad! Your experience is proof that all treatments, ways if going about a diagnosis, etc need to be represented and brought to light. Imagine if someone silenced Beth. You would not have had that Augmentin info. I agree she is helping some kids and for that I am thankful. The world must have stopped around you when you got that hug. I am so happy. momtocole, My son had rigid bedtime routines, rituals, etc as well. I too had to do very specific thing and say very specific things. Once I realized he was nudging a little out of it, I ran with it. Every two or three nights, I'd change up what I said or did to make sure we weren't falling into another ritual. Even to date, he is doing well, and I still find myself testing him sometimes