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saidie10

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Posts posted by saidie10

  3. Can't stop crying today

    in PANS / PANDAS (Lyme included)

    Posted

    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????

  6. Biting the Bullet

    in PANS / PANDAS (Lyme included)

    Posted

    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

  7. Biting the Bullet

    in PANS / PANDAS (Lyme included)

    Posted

    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. What was your Child's general health as a baby and/or toddler?

    in PANS / PANDAS (Lyme included)

    Posted

    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. Blood testing for other contributing factors

    in PANS / PANDAS (Lyme included)

    Posted

    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

  12. Urgent help needed

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  13. San Antonio/Austin Texas area Support Group

    in PANS / PANDAS (Lyme included)

    Posted

    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!

  14. What else can I do?

    in PANS / PANDAS (Lyme included)

    Posted

    Have you considered starting her on an antibiotic while you wait for the tests and upcoming appointments? If it is a bacterial infection such as strep or mycoplasma causing this, perhaps abx would be able to stop it in its tracks.

     

    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!

  15. texas a&m attendees

    in PANS / PANDAS (Lyme included)

    Posted

    I asked her about raised Cam K in non-pandas recent strep kids, because she has said that the median for that is 135, and she said that the range doesn’t really go above 139 or so for those kids.

     

    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...

  16. How much weight should be put in HNK1 (CD57) Panel

    in PANS / PANDAS (Lyme included)

    Posted

    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!

     

    I have heard that CD57 is not always considered reliable for children by some LLMD's. However, with your son's results and his lack of response to the abx and IVIG, I think it should be checked out for sure. The only other condition that I've heard of that can cause a low test is HIV.

     

    Good luck!

     

    Susan

     

    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.

  17. Dr. Trileffiti

    in PANS / PANDAS (Lyme included)

    Posted

    I was on Herr last week for my 2 year old son. I contacted lots if doctors, but Dr. T seemed the best and emailed me right away and agreed with some bloodwork (done previously) and his history that he had PANDAS but wanted more bloodwork. I got all the bloodwork done and then emailed him a couple days later to tell him my son was starting with the tics again and he responded right away and got the bloodwork that was done and sent it to me and said he would call me at the end of the week with all the bloodwork.

    I emailed him in the mean time to tell him we started antibiotics but he has not responded. It's been almost a week and I have emailed him a few times with no response ???? He went from emailing within an hour to now going a week ???

    Today I emailed him to ask him for my sons bloodwork and I appreciate all he's done but if he doesn't want to help us I can take his bloodwork to someone else. Again no answer ???

    All I ever hear is how great he is and I thought he was amazing and the first Dr to hear me and now I'm so confused ????

    I really don't want my son to go through all the bloodwork again and I don't know how to get it ????

     

    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!!!

  18. HNK1 (CD57) Panel

    in PANS / PANDAS (Lyme included)

    Posted

    Hi there! Me again :D . 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.

  19. My plan...any input appreciated :)

    in PANS / PANDAS (Lyme included)

    Posted

    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 :unsure: 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 :)

  22. How much weight should be put in HNK1 (CD57) Panel

    in PANS / PANDAS (Lyme included)

    Posted

    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

  23. Cam Kinase 179...does my child have PANDAS?

    in PANS / PANDAS (Lyme included)

    Posted

    saidie10----when Dr. MC wrote: "extremely elevated...you almost always NEVER see these types of numbers in children that are normal"--can you share what they were?

     

    I've been told by an immunologist and neurologist that antineuronals are not indicative of anything for sure...that random "normal" people walking down the street can have them in their blood. Even our "pandas specialist" is not treating aggressively for our dd with a CamK of 168, high antilyso, and antiD1 4000 (4 times the mean!).

     

    christianmom---I can't remember...are you on the lyme path now? Did Igenex tell anything, and did the Metametrix help?

     

    Jag10---I like that statement by Philly! I think I took the "forcefully" part and ran with it.....

     

    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.

  24. Depressed...sad...this sucks! Excuse my french

    in PANS / PANDAS (Lyme included)

    Posted

    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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