Jump to content
ACN Latitudes Forums

LindaMW

Members
  • Posts

    115
  • Joined

  • Last visited

  • Days Won

    2

Everything posted by LindaMW

  1. This has been our second year and I noticed his symptoms flare from December through March. There is a definite connection with cold, flu and other things that come out in the winter.
  2. I agree with you LLM, this is awesome. Any chance to gain knowledge, especially about things that can effect our children's issues. I am gonna have my husband check it out. I recently had a virus on my computer so I am a little scared to venture onto unknown sites, but it did seem pretty reputable. Plus how do you watch the videos, do you download them? Just a litle cautious
  3. We have been experimenting with Azithromycin and saw a big improvement. The OCD which has been mild this time, has gone completely. The rages come off and on but again, not as bad as before. He has been taking it full strength since the beginning of January and about the third week of February we went to prophylactic dose. It's been about two weeks and I just started seeing some OCD come back and he had a really bad rage episode last night. Is it because we cut back, don't know, but it is the only change and seems that way to me. I am sure others can give their experience also. This was the first time in 1 1/2 years that we tried Zith. Saw improvement in the past with Keflex and Augmentin but this year had to move to Zith, the other two did nothing. Plus we are still waiting for blood tests results so I don't know what we could be dealing with.
  4. Seeing the post about flares when teeth fall out reminded me of our experience with one of my sons teeth exploding after falling out. We did see a flare in symptoms before it fell out and then subsided after. But the next day I saw the tooth in two pieces and didn't know what happened. Then later that day, I was sitting at my desk and the remaining piece exploded again. It was like a popcorn kernal. Now we are still waiting for test results, but my husband wondered if there is an infection, somewhere, that could have caused the explosion, it could be fermenting the tooth and caused it to explode. Does that make any sense?
  5. Lilly in response to your question, we dealt with a private school before and they could not really help, limit resources. Now we are with PACyber and they have been awesome. Got him on a 504 plan within weeks. I think everyone's experience has been different, private, public, homeschooling.
  6. My son missed two months of school last year, 3rd grade. Now this year, 4th grade, he started in the fall and by November everything got bad and we decided to cyber school for this year. Our goal is to send him to school next year because he really wants to go. He hates cyber school and wants to be in a regular school but he cannot explain why he cannot go sometimes. I can only imagine what these poor children are feeling. They just want to be normal and they cannot explain why these feelings come over them. These doctors better start understanding this because these children are losing valuable years of their lives. Sorry didn't mean to go crazy, just get upset when I think about it.
  7. Thanks for the link to a previous post. I did research bloodletting. I have been really trying to keep track of all the symptoms from the beginning (Oct. 2011). I now have about 13 pages in a word document with the various dates and symptoms. Trying to see any kind of pattern. He had about 12 tubes of blood taken, almost passed out. He is only 10 1/2 and weighs about 68 lbs. I felt so bad for him, especially since he has been going through so much for so long. He did say he would not donate blood when he got older. The frustrating part is these tests may come back negative, which has happened in the past, so we will still not have an answer as to what is causing all this. That happened on Wednesday and today is Friday and he has completely crashed again. So the effects were short lived, but I still think it is significant. We see our dr in about 2 weeks and I am definitely bringing it up.
  8. If anyone is from the Pittsburgh area or near by. Event--June 9, 2013 https://www.facebook.com/PittsburghPANDASResource
  9. Here is a site I found that might help. It looks like it can help with gut issues but it seems to have some side effects that you may want to check into. Hope that helps. http://www.healingnaturallybybee.com/articles/anti6.php
  10. My husband and I found this very interesting and wondered if anyone else has even noticed this. The last few days my son has been agitated, poor concentration, handwriting difficulty... Today the doctor ordered a whole load of blood work, lyme, aso titers, thyroid... This afternoon since the blood work, he has been a new child. The agitation has gone, he did his school work with no problem and I saw an improvment in his handwriting. What could this mean? I think this is very significant in understanding this whole PANS problem. It almost seems like the same effective of IVIG, am I wrong in that connection? We have not done IVIG but from everything I have read I am just wondering, it seems very weird. If anyone has any explainations or understanding, I would really appreciate your input. Thanks
  11. I just read the post about allergy shots and got thinking. Our older son has had severe allergies, seasonal, food... since he was born and has been getting shots for the last five years. Now my younger son, who has had no allergies or any other health issues, gets the Pandas problem. From everything I have read, it would have seemed more likely for my older son to get Pandas. Since he has been getting frequest doses of steroids over the years and is already battling the allergies, could that have had an influence over him not getting Pandas?
  12. My son has been having more memory, concentration and focus issues this time around. Last year it was classic Pandas, anxiety, OCD, writing problems, sleep issues... This year we do not know what infection we could be dealing with, still in work with doctors, but the issues have all been brain related. I do not see any OCD, some anxiety, but mainly the memory and brain and sleeping, or lack of sleeping. That led to the doctor sending him for neuropsychological testing. So far it has taken two trips because he said his brain hurts when he is taking the tests. Major headache when he is done. We are going to have one more trip next week and they should be done. Has anyone else done this test? I am still trying to get the doctors to test for lyme. Our doctor is contacting Dr. Murphy in FL to see what blood work to run. I just hope this testing is not a waste because it is causing him so much pain. Just seeing if anyone had first hand experience and if it is worth all this struggle. Also the doctor said this could be OCD but more with his thoughts not hand washing or that kind of stuff. But my question to her is, then how come it is only a problem when he has to really think and concentrate like with school work or this test and not when he has to choose what to wear or eat or play?
  13. Thank you everyone who responded. I am going to talk this over with our Dr. and see if she will look into this.
  14. Oh yes. Our pedi says he believes in Pandas but does not believe in the treatment, abx, steroids, ivig... He says we need to be doing therapy. Now the dev. pedi we see who is treating the Pandas basically will do anything to help our son. We have been experimenting with medicines to see what would help. At this point I do not even tell the regular pedi what we are doing. We see him once a year for the annual checkup and we see the dev pedi about every two weeks now. If you want to send me a private message I can give you names. We are also in Pitts.
  15. My son has not responded to anything for the last two months. He will not go to school or do online. The abx are not doing anything this time. I do not even know if there is an infection or what. I just know my son is non-functioning everyday. He sleeps off and on, he has constant headaches, cannot concentrate, will not even talk to me. Something is going on. He was fine until October and then he had a sore throat, no strep but it all went down hill from there. In the spring we saw a huge improvement with abx, this time we have tried Augmentin and Keflex and still no change. My point is,I want to have his blood work tested for everything that could be a factor in Pandas. I have seen some of you say mycoplasma, lyme, Igg and Iga, ASO titers, what else should I be looking at? Any suggestions will be greatly appreciated. Thanks
  16. I just tried to check the website for her lab and it would not load, I literally got nothing on the page. Anyone hear any more about when it is to open? I orginally heard early 2013. I am praying this will open more doors for all of us who are having trouble with finding out what our children are really fighting.
  17. Cobbie, I am right there with you. I think this weekend's horrific events put my thoughts in places I did not want to go. But at the same time my heart just breaks for those families. On Thursday, the day before, our doctor said my son has borderline aspergers symptoms. But this still is not helping treat the Pandas. They just love to give titles, but it needs to mean something in the treatment. Hang in there
  18. We have been battling this horrible disorder for 14 months now. But my biggest concern at this point is his memory. Example--He was going to start playing basketball for school in November, so we went to get the new high tops, but unfortunately he has been sick and has never gone back to school. Now we are cyber schooling and signed him up at our local rec center. I got the shoes out for his first game and he saw them on the floor and asked who they were for. He said he did not remember us buying them a month ago. This is so scary. Has anyone seen this with their children? Does this mean there is permenant damage? Sometimes you think you have this under some control and then a new issue pops up. Why do these children have to suffer with this? Thanks
  19. I also emailed him our story. I really hope this can get the ball rolling and help get this out into the media. JPDad I also shared our pathetic experiences at CH of P.
  20. Have you tried GABA or Inositol? My son (10 yrs) has been flaring for the last 6 weeks, doing Aug twice a day but also giving GABA 500mg twice a day and it has taken the edge off. I have seen it work like the Motrin, kind of a quick fix, not lasting very long. When he has those rages it is horrible for all of us and I have given Motrin and saw an improvement. Now I am seeing some help from the GABA. I would like to try the Inositol for the OCD. We see our dr next week and I am gonna mention it. My thoughts are with you. This is a horrible ailment our children have to suffer. We are now looking at cyber school because he has not been in school for the last three weeks. I really hope you find something that works. I will say a prayer for you and your family and hope you get through the holidays without too many problems.
  21. Thankfully more information in the media about autoimmune and brain symptoms. Even though this is not Pandas maybe it will still help to bring attention to illness like that. Plus there was also another article on the Pandas Network about a boy named Max, I think someone already posted it here. http://shine.yahoo.com/book-club/-brain-on-fire---a-writer-possessed.html
  22. We did not have a positive result with Prozac. I did not see much help for OCD and it did make him very hpyer. I think the dr termed it hypermanic. After 2 months on it he ended up having hallucinations and they took him off. At this point he has only had antibiotics to help with the syptoms. I know we want to help our children in every way we can, but sometimes it is so hard because they do not know what really works for this. Best of luck with whatever path you choose. Right now my son is having a flare up and I am hoping the dr will change the antibiotics. Have you noticed when the OCD is bad that he holds his hands in a gripping like way? That is always a sign that I know the OCD is back.
  23. My family and I will be there. I just saw it posted on Facebook last week. Looking forward to meeting everyone. Linda
  24. Is he taking any antiobiotics now? Our doctor told us to try GABA when he seems anxious. I have noticed it does calm him. We are currently on Keflex, just starting a long term course as maintenance and I noticed he is jumpy and wound up more so than usual (son also 10 yrs). Our biggest issue is agitation and irratonal thinking. I have noticed the abx has stopped the OCD. All of us families have experienced different things but yet some of the same things, it is just so confusing at times. I know what you mean about needing to vent, we all do. Hopefully you will find some answers, many great people on here with advice. You are not alone, if that helps. My days are usually filled with anxiety myself, waiting for the phone to ring because he can't stay at school or something else is wrong. Linda
  25. So upon further research I found there already is an awareness ribbon and colors. I have never seen this. We really need to get this out. http://www.pansawareness.org/
×
×
  • Create New...