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Everything posted by saidie10

  1. yes tamistwins!!!! Sounds like very positive progress!!!! Sending continued positive vibes your way!
  2. GO FOR IT! I couldn't agree more that your child will be in the hands of people who seriously want this trial to have the results they hope for...healing, healing, healing for the participants. Please go with your gut, do what is best for your family, only you can know.
  3. All your stories are so heartbreaking too. I am a total freaking mess today and reading your stories breaks my heart again, and your kind words warm it. Thank you all for reaching out to me. I really needed it today. I wish nothing but healing for all of your kids...all of our kids. Best to you all, Cindy
  4. This morning was so hard...bathroom OCD issues are back along with clothes issues (nothing feels right...too tight, too loose, etc) So hard to see DS8 suffering. He asked me to leave him alone because he just needed to stand there at the potty. Yes, just stand there, pants down saying he has to go but nothing is happening of course. I did and when I peaked in on him a bit later he was pointing at the sky, mouthing something, and waving his finger. When he saw me he quickly stopped. I asked what he was doing and he said he was cursing God for how he was made......we both cried together. I typically don't cry in front of him but I simply could not control myself and the sadness I knew he was feeling at that moment. We r starting Zithro tomorrow...waiting on lab results and praying all the while. Why do our poor children have to suffer????
  5. Mean people!!! Hope she improves soon. This has all made me realize and remember that my sons EXPLOSIVE OCD began the night he badly injured his front toot. It was traumatizing for him! Wow interesting...
  6. Anyone else pray your childs strep titers are elevated so they can get the help they need? I dreamed about it all night...i woke up thinking about the day my boys will be all better....
  7. I believe she simply said that Lyme positive kids results on their tests were similar to PANDAS...i am sorry I dont recall if she specified only Cam or Antineuronals as well. I wish I had asked her how they were going to market it...good question. I know she did say she was working hard on getting some important things published so I know that willl
  8. I was fortunate to attend a meeting last night in Dallas and heard Dr. C speak again. Some interesting things are on the horizon!!!! Yipee! She does expect and hope her private lab to be open to the public in April which means CamKinase and AntiNeuronal testing will resume and doctors can start ordering the test again. They are also beginning a study on Lyme as the Lyme positive children in their study scored very similar numbers to the PANDAS patients on their. She said of the children they studied, about 45% of them were true PANDAS (strep appeared to be the only trigger) while the others were also triggered or only appeared to be triggered by other infectious agents like Lyme, Mycoplasma, and influenza. This morning I got to meet with Dr. R again and spent quite a bit of time with him going over the boys cases. It has been over a year since we have seen him and he was willing to test our boys and help us. He really has a great bedside manner and seems legitimately concerned about these children. Along with the Labs Dr. I in San Antonio is running and the labs Dr. R is running, we will get updated Immune profiles on the boys, along with titers and screens for other viral and or bacterial infections. We are also going to do the Western Blot on the boys and myself and DH, along with ASO and AntiDNase B, HNK1 (CD57) Panel and Vitamin D levels. Dr. R said best to rule it out as he is seeing a lot of positive Lymes in his PANDAS patients. I have personally pulled tics off my husband in the last 16 years and he informed me that he has had so many he can't keep track. He grew up hunting and fishing so it was not unusual. As for whether or not he has any Lyme symptoms, the only really that could be attributed, but could obviously be symptoms of other issues, is he has arthritic type symptoms in his hands, and has talked to me about blurred vision sometimes as well. He does not ever remember seeing a rash. Anyway, with that, the boys low CD57 which can indicate some type of chronic infection, and my unexplained bowel inflammation for the past 4 years, Dr. R said we need to test. It is better safe than sorry. Still, for some reason, I will be very shocked if it comes back positive on any of us. Who knows?!?!?! Thanks for reading and hope all are doing well
  9. I am so sorry your child is suffering so much. It is so devastating to watch and you feel helpless. Does Motrin help at all. I know it is basic, but it really helped with my sons rages when we had not other options. It really seemed to calm him. Where do you live if you don't mind me asking?
  10. I like polls, I don't know what it is about em...they give me some kind of sense of normal, some kind of sense of "you are not alone". Who knows, but I like em. A brief overview of my two boys general childhood health: 1. Seasonal allergies treated with both medication and steroid breathing treatments. 2. On the low low end of the growth charts for height and weight. 3. Early speech development. 4. Darn Cute (oh wait that is just my opinion, not a statement of general health). 5. Always seemed sick with ear infections, strep, URI's...etc. All kinds of ear, nose, respiratory and throat illnesses basically. So that about sums it up!
  11. Hi! I will contact you soon with more information! That's quite an undertaking you will be getting into moving all those kiddos!!!! Good luck! Hope all your kiddos are doing well. How's H and the little one?
  12. You can also get some good information from the Great Pains OATS test and the NeuroScience Neurotransmitter Profile. These are very easy at home urine collection kits that you send off. They will give you a good luck at gut and nutritional health, along with the current Neurotransmitter levels (dopamine, seratonine, etc.) These are all important to look at when you are trying to put all the puzzle pieces together. We are about to do food allergy testing as well and this can be done in conjunction with the Great Plains OATS test. Good luck! Cindy
  13. I might be the lone voice, but my son did amazingly well on a low dose zoloft before we got the PANDAS dx. The Pedi Neuro put him on it for the dramatic OCD he was experiencing. It helped him through the really tough days after the sudden onset, to keep things calm until we got in to the Immunologist. This is just a suggestion, though more natural supplements suggested here sound really good and we may have tried them if we had known about them back then.
  14. Hello all! I am putting together contacts (have got a few from Diana P) whom would be interested in a monthly support group for the San Antonio Texas/Austin Texas area. Resources are very limited I have found in these two somewhat decent sized cities so family support is critical in helping each other find solutions and support. If you are interested in receiving further information about a support group in this ares, please PM me your information and will gladly include you in any correspondence. Thanks!
  15. I say try and her her on abx and see if you see improvement. It definitely can not hurt to try this while you are waiting for the appointments. Good luck!
  16. This was a huge statement for me. I have been truly hung up on my younger son's CamKinase of 179. He is not "classic" PANDAS presentation with the sudden onset of things like his brother was. I mean, his brother simply changed, like a new personality at the age of 5.5. My younger son truly reacts to strep with PANDAS symptoms though, but his immune system must be stronger than his brothers as he seems to recover after the normal treatment for a current infection (although his baseline in between episodes is getting worse). I now feel confident he is PANDAS too and Dr. C's statement helped me get some resolution on that. It helps with the naysayers in the family who always want to tell me that he is just the "problem" child. Those people can just kiss my butt now! Not that I want to be able to say "I told you so" and I am not happy at all he is likely PANDAS too like his brother, but it definitely helps me know I am not crazy when I am protective of my child who is having a rage and everyone just wants to just look at me as if to say "why aren't you spanking him, why can't you control your child". UGH! I have always known something was not right with him. The terrible twos are not supposed to get worse with each passing year...
  17. Thank you all! I really do not suspect Lyme but those numbers concerned me obviously since it is a marker for Lyme...but after reading the information about children and this test, I think my gut is right but better safe than sorry and we will likely test for it along with other virals and bacteria. Thanks so much! Yes, I've heard this too. I'm not positive, but I think I remember that the famous pediatric LLMD, Dr. J has said this.
  18. Yikes! I hope nothing has happened but goodness I see your sense of concern and urgency to get answers! I actually emailed Dr. T tonight...obviously I have not heard back from him yet. I will let you know if I do, but I surely hope you hear back before I do...I just had a question! Good luck!!!
  19. Hi there! Me again . My boys did take the HNK1 (CD57) Panel test last summer but nothing ever came of it in terms of following up on the results. I was speaking with another PANDAS mom on the phone though the other day and we were going over my boys blood work from last summer and we discussed this test. My boys both scored very low, 21 and 34, with the range of normal being between 60-360. This is a marker for Lymes and a low level could indicate chronic Lyme. Hum, we thought! I did some research and I can't find this specific statement online anywhere from a doctor or medical paper, but on the Lyme forum and on some of the Lyme blogs, I have found people saying that this test is not reliable in children younger than 13 as a marker for Lyme. Anyone heard anything about this, or anyone have any thoughts? Obviously just to be safe, we will likely do Lyme testing.
  20. Hi there! I have my spunk back and am looking for some advice on my plan of action. Thanks to two PANDAS moms for personal phone calls and words of advice, along with all your sweet and kind thoughts on getting my fire back! The first thing I plan to do is tell my son's Dr. I want to test for any other bacteria or virals that we have not tested for and to do a benchmark workup of his immune system since it has been over a year since we did all the initial workup, and we have done 4 IVIG's, etc since then. I will also request to do the same testing on my younger son because I have a feeling he will now show the immune deficiency that his brother did last summer. I also want to do all the Great Plains testing of neurotransmitters that we did on my oldest last summer, but do on both boys this time. All my oldest son's neuros were sky high and I want to see if anything is getting more back to normal in that little head of his. Then, I will request that we switch my oldest (PANDAS dx last summer) to Zithro, and put my youngest on zithro as well. If my son's Dr. balks at this (I don't know why he would...he is not the one getting poked and he is not the one paying for it) then we will head to Dallas to Dr. R who we did all the initial testing with and I know would gladly help us. We are also considering a phone consult with Dr. T if and when we get all the labs to ensure we are moving forward with the right plan of action. We have done a phone consult with Dr. K before and quite honestly I could not understand half of what he said so we are considering Dr. T - have heard good things. I feel strongly about our Dr. here and I really hope he will stay on board with us! I think it is so important for doctors to become more educated on this, and unless they get their hands in there and get dirty, then they will stay in the dark like most of the ones out there right now! Okay so right now I am researching all the necessary tests we need to do...throw em at me or tell me where I can find them!!!! Thanks you guys
  21. Thanks guys for the words of encouragement I think I have a plan now and that is half the battle...of course I imagine I may run into road blocks along the way but ain't nothing this Mama can't handle. I definitely have my fire back!!! I will fight for these kiddos!!!!
  22. Thank you for the reply...their Myco P was normal. What other infections besides Lyme should we be concerned about? We already know Strep is an issue for them.
  23. Hi! I normally post on the PANDAS forum as we have a dx for our 8 year old over a year ago and also suspect PANDAS in our 6 year old as well. I had an interesting conversation with another PANDAS mom this morning and we I was looking over my sons old labs from the Summer of 2009 when we first got the dx. Her and I were talking about testing for other bacterial infections and viral infections since we continue to see symptoms even after a year of abx prophylactics and 4 IVIG's. We saw him improve with the IVIG's but I don't think we are on the right abx so we are trying to get that changed soon. Anyway I am regressing, I mentioned to her that my boys did do the HNK1 (CD57) Panel and she said that could be a marker for Lyme and could indicate further testing is needed. Both of my kids scored low and as I look online I see that a low result (older son was 21 and younger son was 32 with the normal range being 60-360) could be indicativeof chronic Lyme Disease. Holy Smoke now I am freaked out! What are your thoughts on my boys results and does it validate pursing further Lyme testing? Thank you in advance for your thoughts or input. Cindy
  24. Hi...sorry I am just getting back to you. My son's D2 was 16,000. I really don't understand a lot of information about antineuronals, but I will tell you that when I was at the TX Symposium and asked Dr. C a question about my younger son (like the one I asked you guys here) when I mentioned the D2 of 16,000 she rolled her eyes as as if to say "my god that is high". So I believe that the antineuruonals are significant and mean something. Again, I really don't understand all the medical stuff, I just know that my son has stuff going on in his brain that is not right and these tests they did helped to indicate that.
  25. You know, this is about right! I came on here a few weeks ago, worried about my younger son and now my olders son's OCD is back and he has motor and vocal tics to boot all after 4 IVIG's, and a year of penicillin. His tics have been gone for so long...it is so sad to see his little body moving and he can't help it. God it hurts to watch. I guess this darn thing still needs more work. I went to the TX Symposium and have appreciated the information others have posted here because I have been so into my own depression that I don't even want to get out of bed. I am just so sad for my kiddos and really don't know what to do next! Sorry for venting. I am afraid I will be no good to them if I can't stop being so damn sad all the time! I want to continue to be a fighter guys! I really do but uuuuugggghhhh!!!!!!! Sorry again for my rant. I am going to try and get my kids Immunologist to change the abx to Zithro. Thank you to Diana Pohlman for your words of encouragement and advice on Saturday. Wish me luck with him...my son(s) are his first PANDAS patients....
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