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Jonos mom

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Posts posted by Jonos mom

  1. Thanks Kiera for the info. That seems to be the popular choice from what I have seen so far. EAMom, thanks so much for posting that link. I did a search and kept coming up with anything related to the word probiotics! lol I got rather tiresome trying filter through all of them. Thanks again. :)

  2. I know very little about hyperbaric oxygen from an integrative medicine standpoint- but I wanted to mention that there is a place in Tampa or St Petersburg FL that does this for brain-injured and (i believe) autistic kids.

    When we were at CBT at USF and staying at the RMH , there was info about it- as some familes come to FL for the hyperbaric oxygen and stay the RMH.

     

    I do not know if you are aware of this facility-- i think this is it:

    HBOT facility

     

     

    Also- Jonos Mom-- I am in your area and my child has seen a great integrative physician (of course, no insurance either)maybe it is the same one? Dr Z?

     

     

    We got to Dr Asher at Natural Horizons Wellness Center. If we all see her at the same time, the three of us are about $550 every 6 weeks! Not including the costs of his Iv pushes. IT is crazy. Still a lot cheaper for the recommended $20k IVIG treatments another doc recommended. I need to still submit for insurance and see if they will cover something, but I dont anticipate much. But something is better than nothing I suppose. I would like to hear more about your doc if you dont mind. Dr. Asher is crazy busy a lot of the time. All though I love her an what she has done so far has been the most beneficial for my son(14). She deals with a LOT of cancer patients and she is often stressed and seems a bit grouchy, and put things in a manner that are somewhat rude. It is sometimes hard to stomach writing a check out for that much money only to feel worse after leaving. I think I understand why she does it. She deals with very very sick people and if you dont follow her protocol to a T then she gets a little upset. Which with all the sick patients, I am sure she sees life as a gift (which it is) and we should not take it for granite. Then I bring my son in and he wont follow protocol sometimes and I am sure gets tired of "messing" with him. Does that make sense? lol

  3. Hi,

     

    I need to get a good (would be nice to be affordable) probiotic. Doc says she wants me on 20 billion at least and my daughter on 8 billion. She says the ones over the counter at Walmart are fine. I see others on here that purchase more expensive brands. Could you please tell me your experiences and what you ended going with and why?

    Son has Strep, myco and lymes. Daughter has mycop and strep. Husband has myco and strep, and myself is just myco, even though the rest of me is falling apart! lol

    Daughter seems to have the worst gut issues out of us all. We have pretty much determined she is gluten, dairy, and msg sensitive.

     

    Thanks in advance for the comments! :)

     

    Janice

  4. Hi,

    We seen a natural path doc in Fairfax, VA that says that she would like to possible see me son get it. She wanted to pump his immune system with Myers Cocktails first, with a glutithione booster and get his diet right. We havent gotten to it yet. We see her in a few weeks and I will probably bring it up. I am afraid to since she doesnt take insurance.

  5. Thanks everyone. Sorry I haven't responded earlier. I ended up in the emergency room a few days after my birthday. I apparently have an angry gall bladder and stones. I'm going in for surgery on Monday. On the other hand my dh is being admitted again tomorrow or heart issues. It's been an eventful last 6 months. I'll fill you all in later.

    Thanks :)

  6. Thank you, I have heard of that but didn't have the info yet. I met with vice principal and asked what my options were. He said he can talk to the class. Gee, wouldn't that be sorta obvious? Or I can have changed over to a self contained class. Then he will be with other kids with iep's and no more than 10 in a class. I don't know what to do! My husband doesn't want him to move to the other class. The vp said he would labeled and be teased. I'm like, he already has a label and is being teased. He just said it would probably get worse. Oh great!

     

    So I sitting here having a self pity party while doing laundry. I just can't make everyone happy. My son doesn't know what he wants to do.

     

    Has anyone have their child in one of those classes? I'm not really sure he will listen to me if I do the homeschool thing. Not sure my nerves can take it. They are close to shot now. :blink:

  7. I will be praying for your situation. It is so hard for us to watch our children suffer and then to have kid's or should I say Young Adults make fun of them! So frustrating! My DS15 has been on homebound since last Dec - it's been almost a year due to the ocd and adhd type symptoms from the PANDAS. He only has a couple of classes and is struggling to keep up with that - so hard to watch since he had excelled so well in school prior to this. He has a 504 currently. Honestly I have no idea when we will get him back into a classroom situation. It is really hard to know what to do with school. Hang in there and keep looking up! Again I will pray for your son and family.

     

    Thanks for he prayers. I appreciate it! We have lots of people that are praying for us as we are very involved in our church. Can I ask you how you went about getting your son placed on home bound? Did the doctor suggest it? I would really like know how that works. My son was home bound after being in the hospital. But it was all taken care of and I didn't have to do anything. I can honestly say it was a mess though. He didn't learn anything as the teacher was horrified to say anything to him fearing he would make him upset. So ds was constantly up doing things around the house while the teacher would patiently wait. It was a literal waste of all of our time. :-(

     

    Thanks again, I appreciate everything everyone has to offer! :)

  8. Thanks again Nancy! Jono has been seeing a therapist for years. We been through quite a few. He has improved in quite a few things, one being able to control anger. That's when he used to threaten suicide attempts ten times a day. Just scares me that he might be keeping it in instead of saying it. When he starts talking its usually a snowball!

     

    I was hoping the county was available to let me know what my options were before going in today for my meeting. Lol. I guess I'll just have to just tell him my plans on who I plan on contacting and to be prepared, and would you rather nip this in the bud now or later?

     

    As far as the other child, I am sure he has issues. Usually the ones who choose to pick on my kids are usually getting some mistreating of their own. I know it's hard but I explain to the vp that it's still unacceptable. What really pisses me off with some of these kids is, they ask why he does what he does . He tells them about Tourette's and they say, "you suck, you can control it if you want"! They tell him they wish someone would hit him, so they could see him get hurt. They have even told him they wish he would die. I want to remove him out of here so bad, but financially it would hurt us badly. But we will do what we have to do. But.. I lao wonder if we would still be dealing with the same thing over and over just somewhere else. We dealt with it during middle school, and that was a different group of kids. One kid in 7th grade told him that if he caught him in the bathroom, he would slit his throat and take out his heart. Of course this has turned my child into defense mode at school, and he calls them all curse words. So they just feed off that more. I really don't see how this will help him at all. But he needs to have some social interaction, but in good circumstances. Ugh!

     

    I appreciate all the info, it's "rekindling my fire within"! ;-)

  9. I feel for you. With one of the illnesses alone, it is hard to deal with. My son has PANDAS and is being tested for LYMES and I had to pull him temporarily from school on a temp home study.

    I wish you the best and hope the school gets on board. The bullying should not be tolerated!

     

    Can I ask if the school is taking care of that, or did you have to pay on your own? Did the doctors have to write something up for the home study? Thanks for replying. :)

  10. Thank you Nancy, I appreciate you responding. We have already been to the meeting with vice principals, case manager, teachers. It took a threat of getting an attorney for them to get on child. This particular child tormented him in class. Then just continued to do it in the halls. He would run up to my son and grab his breasts then scream "titty"! So, I'm sure as you can guess the rest of the kids catch on. For the last 5 days this child hasn't done anything other than be real smart a** to him, but nothing he can pinpoint as bullying. Kids are randomly saying where he can hear, that he looks like a raccoon with tits. The guidance office has told him to come down and tell on the ones who are doing this immediately. I've explained to them that this was such an issue during 7th grade so much that he had such anxiety issues mixed with the pandas he started making suicide threats. That's when he cried and asked me to take him to a hospital. That's where we stayed 8 days and was able to get the diagnosis of pandas.

     

    Right now he is having kids just imitate his tics in class. Nothing verbal is being said, just they are copying his motions. I have another meeting this morning with the one vp that I feel is the most compassionate so far. He has a nonverbal autistic son whom is now 18. I guess I've never had to push the iep this far and really weren't aware of my options. I tend to get overwhelmed lately as I tend to go into crying spells when I start thinking about this all. Lol, I'm having one now, yeah! My poor kids, my son feels responsible for my breakdowns, and my dd9 now cries with me. She was just recently got diagnosed with pandas also. My brother has mental issues, my mom has MS, and my husband is a workaholic. Who can blame him from not wanting to deal with some of this sometimes. So I basically have something going on 24/7. Sorry I don't meant to vent, nor I'm looking for any special treatment. I'm just curious as to what other experiences parents had in this situation. I'm going to try and contact parent resources this morning before my meeting. I'm not sure if they are open with it being election day.

     

    Thanks :)

  11. My ds14, in 9th grade has pandas, mycoplasma pneumoniae, lymes, tourettes and ADHD. Dh and I had a meeting at the school and he is failing horribly. What's amazing is, he does the work sometimes but just doesn't turn it in. He has an iep, but he isn't focused and is doing poorly every way possible. His Tourette's are kicking in badly due to stress. He is on 200mg of doxycycline a day. Not sure this is enough as he weighs 192 lbs. he broke down several times tonight and cried. He feels all the kids are making fun of him. We've been up there and threatened attorneys if the didn't do something about the bullies. My gosh, I can't have the entire class called down to the office. At this point I've cried several times not knowing what the best choice is. I'm ready to pull him out. He was hospitalized 8 days back in 2009 school year because his anxiety level went through the roof. Kids threatening him because he's different! He continued the rest of the year on home bound. Which was a bonified joke.

     

    My plan is to call a few places tat do more special Ed classes and work in small er groups. Getting us both in the gym to hopefully make us lose weight and feel better. Have any of you dealt with the school issues to this level? What do you do?

     

    I've just about had it this week! I won't give up, but I just don't know how much more I can take without aging a nervous breakdown!

     

    Thanks! ;)

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