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Everything posted by thereishope

  1. When my 5 yr old saw the psychiatrist, she automatically screened him for autism and Asperger's because of the variety of problems he had and the pre-existing speech disorder he had. However, mainly because of his creativity,wide ranges of interest, many of the problems resolving on their own over time, and the fact that prior to his first strep he never would have had reason to be screened, she said he definitely did not have autism or Asperger's. 2 psychologists have also agreed w/ her. I never thought he had it, but it was something they automatically did.Now, I also have a 3 yr old. She has already "established" herself as hitting all milestones, being fine w/ socialization, etc. If she now experienced what my 5 yr old did, I still can't see her as being diagnosed w/ autism because she had the base to compare it to. So, I think what I'm trying to say, as I think this through as I type, is the misdiagnosis would be more likely to happen if the first strep infection and the emergence of PANDAS occurred very young like around 2 or younger. So, anyway, I can see how younger children would be misdiagnosed or can I even say that a younger child's autism or Asperger's was caused by PANDAS? If the strep infection happened very young, prior to social skills emerging and when tantrums are still considered acceptable, and the ped at the time never heard of PANDAS, they would have never had reason for a strep test, and in turn, antibiotics would have never been given. Thus more and more damage would have continued to be done and eventually the label of autism would have been given. This can esp be the case for some of the older children w/ autism if their PANDAS emerged at a time when PANDAS was even less heard of. I guess one question I would have is whether older autistic children have a higher chance of being a strep carrier or a child who does not exhibit symptoms of strep when present.
  2. I think trying to have PANDAS fall under another umbrella of diagnosis would be your best bet as someone else suggested. It would help w/ insurance as well. That actually MIGHT be a reason why the hospital won't do it. They know they won't get paid by insurance because insurance won't recognize the diagnosis. Unfortunately, hospitals are often like that. Doctors often have priviledges at more than one hospital. He hasn't mentioned that as a possibility? You might end up needing a specialist directly associated w/ the hospital. They have more weight w/in the hospital itself than just a pediatrician.
  3. If she says her throat hurts and her behaviors are worsening, have you thought about a strep test? Even if up the meds, which may kill an infection if it is present, it always good to know if your child, in fact, has strep.
  4. Thanks! I feel a little better already. I envisioned the third degree w/ tons of questions as to why I don't believe they should be given. Even if my kids were immunized, I'd probably pull them out of school for an outbreak of anything anyway! Here in AZ we have the philosophical exemption. I've never had to give a reason, just check the box that says philosophical and sign that I agree to keep my child out of school if there is an outbreak of diseases she has not been immunized for.
  5. I want opinions, and I thank you for yours. I didn't agree w/ that response either. It is already in my kids records that they've been vaccinated in the past. I think since I can take the philosophical stand it may be okay that I got them in the past but not in the future. You said your other kids did get the polio vaccine. Do you plan on getting any others? Does your dr know and understand the real reason for no vaccines & that is why he/she doesn't question you?
  6. If you choose to exclude your child from immunization and say it is for philosphical or religion reasons, can you pick and choose which ones you don't give or is it an all or none deal? And what exactly are the philosophical reasons? Is it like saying you don't believe your child should have foreign chemicals injected into their body. You believe they should remain natural and organic? I just want to be prepared for any and all questions. This was the response I got from an autoimmune group when I asked them about vaccines and autoimmune disorders... "Having an autoimmune disease doesn't mean your child cannot receive any of the vaccines... Autoimmune disease is different from immunodeficency... Most vaccines are "killed", which mean you cannot get the disease from the injection. Having an autoimmune disease does not make you anymore succeptible to "catching" anything from the vaccine... On the contrary, people with autoimmune disease should get the vaccines because when we get sick our immune system powers up to fight the virus or bacteria, but then it doesn't know how to shut off and starts to attack our own cells... Then our symptoms can flare... Hope this sheds some light... "
  7. I'm confused on the chicken pox vaccine. Not all states have a second shot. I live in OH, & its never been brought up for my 8 year old yet.I know that is one I will not give again. Here's a link about which states allow exemptions for which reasons. http://www.nvic.org/vaccine-laws.aspx
  8. Did he have a sudden onset of tics as a result of PANDAS or did he have any that were already present and just worsened?As for him being super sensitive and emotional, well, that is hard symptoms to assess. It must be frustrating for him and that could be why he is still having the high emotional responses. That could also spiral into why he still needs comfort at night. It sounds like you've seen some progress so that's a sign of hope. Don't give up that hope!
  9. Thank you for posting this! I live in Cincinnati, where one of the hospitals doing the swine flu vaccine trials is being done at the Children's Hospital. On the news, locals are calling the hospital begging them to include thier children in the trials. I just don't understand that.
  10. Michele, I am happy your appt went well. I think when you step back and see that she is waiting for the IVIG, you should feel a sense of reassurance that she has your son's best well being in mind. I know it may have been frustrating not to get it, but it does sound like she has a plan. As for 5 day steroid vs month long steroid. My son got the 5 day not as a precursor to IVIG but I believe to stop more inflamation from occurring. Maybe to weaken the immune system to stop the antibodies form being produced? That's just a theory.He received prednisone during the 10 day course of antibiotics to kill a strep infection. It did help. I can see how being on it longer, could have benificial, but I also understand why my son't dr did what he did. Michele, be prepared for other things to change, like a definite increase in appetite. That's very much expected.So is he still on the Omnicef. if I recall, you stopped taking it because of the bowel issues, but did you restart it? Did she put him on something else because his immune system will be weakend by the steroids? Did she outright say what he stance was on long term antibiotics? When will you find out about the anxiety study w/ NIMH? Do follow through w/ that. Get youself est w/ them and you may be calle don for other studies, inc PANDAS. You did a great job, Michele!
  11. That's the thing,when you've experienced so much stuff in life, when another problem arrises, you have two responses... 1. "God, are you serious? Haven't I been through enough?" I feel bad getting angered at God, and I know I should never do that, But I also know He understands why. But that comes and goes rather quickly. I don't want people jumping on me for admitting this one. 2. You draw on that strength you were forced to previously acquire. That's a good thing. I think in the scheme of things, I have come to accept it. I think sometimes I avoid putting myself in situations because I don't want to be disappointed. That's a lengthy one to explain.But I have also seen improvement and right now I'm in an acceptable point in his third recovery. So that is why I am looking at the future with a smile. But ask me that same question again IF he gets sick again. I always say IF, and I know I will have a totally different answer. I live in Cincinnati, so you're a bit of a drive for me:) But if anyone is in the area and you just need a break, let me know. Let I said in my previous post, I think we would all feel better knowing we're levaing our kids w/ someone who understands what's going on and if a problem arises, we wouldn't be shellshocked like a teen babysitter.Soemtimes it's also just good knowing that option is there, even if you never take advantage of it.
  12. The idea of making the swine flu mandatory is different. From what I've read, they would give no exceptions, not even religious. I know you can opt out of other vaccines, but it sounds like this would be very strict. Part of me doesn't think that they would be able to pull off making it absolutely mandatory, but it still scares me. Here's a link to one of the stories... http://salsa.democracyinaction.org/o/568/c...paign_KEY=27275 As for my other kids, they have had strep and appear to not have PANDAS. I watched them like a hawk. My theory is to go ahead and vaccinate them w/ the normal boosters and POSSIBLY get them a flu shot. But I am staying away from the swine flu shot. That way, in a round about way, I am lessening the likelyhood of brinigng things into the house, and thus making my PANDAS child sick. If that makes sense. I haven't made any real decisions on the siblings.
  13. I saw on the news last night that there will be a swine flu vaccine available by Oct. There's also rumor that the government will make a flu vaccine and swine flu vaccine mandatory, no exceptions. I can see them doing this for school age chilldren. My anxiety is raising since my son's 6 year checkup will be in early Oct and I know I will have to defend my decision for no flu shot or swine flu shot. I am still not sure what to do about all other vaccines. Does anyone know what vacines are "acceptable" for PANDAS kids vs ones to definitely to avoid? All I know is to avoid chicken pox and flu. Do you think it's ok for siblings in the same house to get a reg flu shot? I know not to do Flu mist.
  14. Well, I am the stay at home mom of a 3,5,8 year olds. I have a husband that means well, but, I am sorry to say, "doesn't fully get it". The majority of problems fallen me. I have done the research. I have made the calls. I have been the one to hold him down when he's screaming and hitting.I was the one who spoon fed him when he wouldn't eat. I was the one who helped him overcome so many of his OCD tendencies. I have to teach my husband what to do. I wish someone would just "tell" me and give ME a list of instructions. So I always feel beaten down. I have not gotten a break since this began in Sept 08. I can't even think of someone babysitting my son in case a problem arrises. Know it's normal to feel this way. Even though we are doing really well right now, I feel I am psychologically scarred from what I have experienced. I find myself, at times, being able to cry on demand. However, I have seen the light at the end of the tunnel. Granted, I have been slammed back to end of it one too many times, but I know I will get my son back. There isn't another option. You need to step back and see the strength you have. If you have experienced a blessed life until now, this is your wake up call and it may be harder. Unfortunately, I have had to overcome many struggles throughout life and I know in those occurrences in time you find a way to go on. It may be silly, but I have seen that in life, struggles come in waves. I will experience something awful like a parnet dying, then have calm for a couple years and then something else tragic happens. So, I know I will get a break at some point. It's okay to feel like you've had a loss, but don't beat yorself up by looking at old pics and remembering what it use to be like either. You need to have hope. You need to have that mentally that you WILL overcome this. Where do you live? If anyone lives around you, maybe they can visit you and give you a break. You will find comfort in having an understanding person being around your kids. Knowing they will not judge and will understand.
  15. I'm not very familiar w/ meds, but I'm sure by tomorrow you'll have tons of posts on this. Wait for moms to put kids to bed, then they'll hit the computer:) My son, 5, goes through bouts of wetting his bed. It's seems to happen for about 3 nights, then stops out of nowhere. The longest he wet it for was a few months ago.He did it for about a week or two. We were debating bringing him in for a possible bladder infection, UTI, then again, it just stopped. Oddest thing. Is there anything at all that can be causing a setback? Stress, a new summer class, visitors, a simple cold? You said a cough...that could be a sign of a cold or even allergies. Allergies and a cold make my son setback a little. Not as bad as w/ strep, but noticeable. When it was his allergies, Benadryl helped. After 3 days on it, his behavior stabilized. With the cold, Ibruprofen helped. I even brought him for a strep test when it was only allergies. That one came back neg. It was the only time I was wrong. But thank God I was wrong.
  16. Doctors will say the child should be back to normal w/in the 10 day course of antibiotics.That is so not the case. Is this your child's first episode? W/ my son's first episode, I noticed reprieves in the behavior around day 7.But it didn't reach it being more him than not him for several weeks. Also, during recovery, you will notice "bumps in the road". That is normal. The neurologist said that is to be expected as the brain heals and not to be concerned, or even call him, uinless it went passed three days of setbacks after seeing improvement. Now when my son got strep the second time, seeing any improvement or plateauing in symptoms took longer. Our theory is because the first and second bouts of strep were very close. I can't remember the third time.I can always look it up. Finally, remember every child is different. Even with my son, each episode had different symptoms and different time lines. Just when you think you may kind of know PANDAS, it throws you another curve ball.
  17. You need to realize that you at least recognized it and got treatment quickly. The third time my son had strep, I believe we caught it earlier on than the previous times. We got used to recognizing it. After two meltdowns that including hitting, screaming, etc in a course of day, we went in for the strep test. If it means anything, the symptoms that time didn't get as out of control like they did the first two times. It still took awhile to get better, but he didn't reach the scary low point like he had in the previous occassions.
  18. Waiting for the office to open is an awful feeling. What's worse is if they won't give you meds until cultures come back. I've been where you are.Just knowing it's back. Not even needing confirmation. What needs to be your driving force is knowing you've battled it once and got your child back. It WILL happen again. You must believe that or the fight will be harder.
  19. The severity of PANDAS varies child to child. Each episode also can vary with symptoms and severity. Just because it is not having a neg impact now doesn't mean it won't strike again worse in the future. My son is not on anything. He has had strep and PANDAS resurface 3 times. My preference would be that he is at least on antibiotics, but no doctor will prescribe it. However, I do believe I am protecting my son to the best of my ability and I don't believe I am a bad mom or not taking care of him. My son also does not get symptoms of strep. I bring him in for a strep test if I experience 2-3 meltdowns. That seems to be tell tale sign. If you've experienced a meltdown, you know how that's different than a child just acting out. If you ever feel like he might need a strep test and they won't do one soley on request, just tell them he's been complaining about a sore throat and he had a fever a couple of days ago or he was exposed to strep.Also keep in mind,that even a cold, allergies, stress, etc may cause some symptoms to resurface for a bit.
  20. I just have a quick question. During IVIG and post, how often do they check blood pressure and would IVIG affect blood pressure? I ask because high blood pressure causes horrible, unbearable migraines.
  21. I don't know if this helps with your question, but my son's first PANDAS episode was only treated w/ antibiotics. And that was only a 10 day dose for strep. He didn't even begin antibiotics until he had strep for about 3 weeks.He doesn't get symptoms of strep.No proph. antibiotics. Then the second time he got strep and PANDAS resurfaced is when he did a 10 day amox for the strep and a steroid. He eventually went back to baseline. But baseline occured while not being on steroids. The script was for only 5 days. However, the time he got strep and PANDAS resurfaced, the symtpoms were never as bad as the first two times, but he has residual OCD. This is just such a confusing disorder. There's no rhyme or reason.
  22. For my son, he finally had some improvement once he was on a steroid for a few days. Prior, he was spiralling downward even after being on antibiotics for a few days for a + strep infection. After he went off the steroid, he remained plateaued for a bit, hmm...maybe he backslid a little, but no where to the point of pre-steroid. After awhile, he continued to improve and eventually went back to baseline. That whole timeline took about 3 months. But then he got strep again and the vicous cycle began again. But that's a separate story.
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