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saidie10

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Posts posted by saidie10

  1. DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!

    in PANS / PANDAS (Lyme included)

    Posted

    Thank you all so much for the responses.  We are scheduling with Dr. Infante ASAP and I got an email back from Dr. Cunningham office and they concurred that even if they appear to be healed things can trigger relapses even years apart.  We had no idea!  My son is 12 and is in the beginnings of puberty so that was something I did not think about either as possibly impacting things.  

  2. DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!

    in PANS / PANDAS (Lyme included)

    Posted

    After 2 years of fighting pediatricians and neurologists, both my boys with the help of Dr. Rao and Dr. Infante were eventually confirmed in high PANDAS range on Cunningham test over 6 years ago.  Both had tonsilectomy's, IVIG's and 1 year of antibiotics and healed!  They recovered - it was truly a miracle and we were so thankful!!!  Very concerned though now.  My youngest son has been experiencing some unfounded fears/rage behavior (reminding us of many years of scary and heartbreaking behaviors) and now his OCD and tics are flaring.  What's happening?!?!  We sooo thought we were done with this.  Poor little guy has anyone else experienced this?  Recommendations??  I guess it's back to Dr. Infante - I hope he is still treating for this?!  I just can't imagine that OCD and tics can completely go away for many years and then come back and not be related to something triggering it.  There is no history in our family of OCD or tic disorders.  Only Rheumatic a fever!

  6. 5 IVIG's later; now HORRIBLE HEAD TIC causing sever headaches

    in PANS / PANDAS (Lyme included)

    Posted · Edited by saidie10

    We did one high dose IVIG and then three (what my Immunologist called booster IVIG's) and then another high dose. This was through Dr. I in San Antonio. Last IVIG was in December, 2011. Our sons Cunningham was done about 2.5 years ago. We have also done the Western Blot for Lyme through LabCorp and although technically they were negative for all four of us, there was 1 lyme specific band found in DS9 and myself and 2 lyme specific bands found in DH.

     

    Just sent an email to Dr. T's office. Guess we need to really consider finding someone who is treating a lot of PANDAS kids. Dr. I was really trying and he did talk with Dr. C and even Dr. S with NIMH, but our boys were his first PANDAS patients.

  7. 5 IVIG's later; now HORRIBLE HEAD TIC causing sever headaches

    in PANS / PANDAS (Lyme included)

    Posted

    Thank you both for the quick response. I will look into the Clinical Trial for Zithro...is that with Tanya Murphy in Florida? As for the information on the methylation, this is very, very interesting! DS had very elevated neurotransmitters on both urinalysis that we did in the past two years. Dopamine was like 4 times the normal. Also, his D2 receptors done by the Cunningham tests were 16000 which Dr. C said was extremely elevated and not seen in normal kids (his camKinase was 164). She also indicated the connection with elevated dopamine and tics.

     

    Thank you so much. I will look into both of these and have emailed Dr. T on other occasions. Maybe we just need to bite the bullet and have a phone consult with him...

     

    Do you have any ideas on what's triggered the relapse? Some of the PANS doctors cast a wider net than others when looking for causes and possible treatments. So that may be a factor in your choice.

     

    Since you've been gone awhile, there are a few ideas that have been explored beyond strep and even lyme. The big "new" idea for one of my kids was the topic of methylation. It's the way your body uses certain vitamins/amino acids to kick start various cycles and metabolisms in your body. If you have problems with the way your body converts (methylates) these raw ingredients, you can end up with deficiencies or excesses of seratonin, dopamine, ingredients necessary for cell energy and ingredients necessary to rid the body of toxins (dopamine and toxins can both be a big trigger of tics, in addition to any autoimmune trigger).

     

    The fact that you're battling depression is completely understandable. But needing three different meds - it might be worth while to explore methylation for yourself as well. Both you and your son may have issues worth exploring. I'd search the forum archives for discussions to see if it rings any bells (Jan-April 2012 is where you'll find a lot of discussion). If this were something worth exploring, Dr T may be a good start, as he tests for these issues and also does phone consults more than some of the other docs.

  8. 5 IVIG's later; now HORRIBLE HEAD TIC causing sever headaches

    in PANS / PANDAS (Lyme included)

    Posted · Edited by saidie10

    Hello,

     

    It's been a while (a long while since I posted last). I have had some tremendous personal family issues in the past year that have almost pushed my marriage to the brink. The stress of the health of both my boys over the last three years has taken a tremendous toll on my marriage and me physically and mentally. I am sure you all can relate. DH and I have been seeing a therapist since January and thankfully we are reconnecting, but I myself am on three medications for depression (my god what has happened?!) I guess we get desperate to keep our sanity and lord knows I have to keep it together for my kids.

     

    Currently, my DS9 is experiencing a resurgence of tics including a horrible head shaking tic that is causing him a lot of pain and distraction in school. Dr. I in San Antonio is no longer treating PANDAS kids (I know he would see him but he is no longer doing any aggressive treatment) as there were so many insurance denials so here we are at a crossroads. I could not get him in to Dr. A (Pedi Neurologist in San Antonio who has seen him) until January 23rd!!!!! He is currently on Omega 2's, Vit D3 suppl, 250mg daily of Penicillin, Probiotic, and 25mg of Zoloft for OCD (which is very much under control).

     

    If you were looking to do a phone consult or even travel to see a PANDAS EXPERT, whom would you call?? We have seen Dr. R in Dallas and we are just not going to be going back there. My son has had 5 IVIG's and he is simply not healed. We would see tremendous improvements in between but we are just not getting this right?! ANY advice is greatly appreciated.

     

    Thanks,

    Cindy

     

    PS..we phone consulted with Dr. K before treatment in San Antonio back in 2010.

  9. Filing Appeal with BCBS for IVIG Coverage

    in PANS / PANDAS (Lyme included)

    Posted

    I was sick when I got the letter and I know the case worker at the Hospital is going to help us fight this but BCBS of Texas has denied covering our DS8's fifth IVIG. They covered the first four but denied this one saying "the proposed services are unproven in available peer-reviewed scientific literature to be safe, effective and durable." Well I can tell them I don't need any peer-reviewed scientific literature to know these have helped my son tremendously. He is off the zoloft completely and the OCD is all but gone! We see tremendous improvements in his secondary condition of ADD/ADHD and the improvements in his fine motor skills are remarkable. The tics seem to be the hardest to get rid of and exposure to strep certainly doesn't help, but the IVIG's have been a lifesaver for him.

     

    Any advice on how to fight this?

     

    And on a crazy other note, the approval process for my DS6's first IVIG went extremely smoothly because he has United Healthcare and they state that they cover IVIG specifically for PANDAS. How messed up is our healthcare system and insurance?

     

    Thanks for reading and offering any advice if you have had to fight insurance.

  10. Post IVIG updates for DS8 and DS6

    in PANS / PANDAS (Lyme included)

    Posted

    Been a while since I last posted. With the holidays and going from PT to FT at work life is crazy as I am sure you all know. Both boys had IVIG on December 22nd and 23rd. This was DS8's fifth IVIG and DS6's first. Before the IVIG's we increased boys to daily Azith, moving the oldest from daily Penicillin to the Azith and starting the youngest on the daily Azith. DS8 was really struggling in school with focus, attention, concentration, handwriting and math. His tics were minimal to nothing and severe bathroom OCD was pretty much gone (yeah!!!) Once school started back up a few weeks ago, he was behaving better in class, his attention span was much better and the improvement in his handwriting was remarkable...wish I could post before and after pics! Then a week and a half ago, his facial tics started up and we knew something was going on. Of course a boy in his class had strep wouldn't you know it! Now we are seeing a return of a lot of his tics that we have not seen in a long time! Damn this strep! Any thoughts on what we should do? Change antibiotics? We are truly at a loss right now.

     

    DS6 seems to be improving. His PANDAS symptoms were mild ticcing (a lot worse when frustrated or angry) and some OCD but he had the severe raging and emotional lability, ease of frustration and extremely poor impulse control. I think he is slowly improving so we are going to just continue to see how it goes with him. We were hoping for an overnight miracle but we will be patient and not change anything just yet.

     

    Any advice is appreciated!

     

    p.s. We are still thinking we need to test for Lyme at some point but know we need to wait a while due to IVIG. This is based on the positive Lyme only bands my husband and I both had on our Western Blot through LabCorp. Is it possible the boys could have Lyme? Is it possible the boys could have congenital Lyme? So many questions remain yet to be answered....

  11. IVIG #5 for DS8 and IVIG #1 for DS6

    in PANS / PANDAS (Lyme included)

    Posted

    We are embarking on another chapter. December 21st and 22nd both my boys will receive IVIG high dose together. With the tremendous results seen in DS8 after his first high dose in August 2010, and the change from Penicillin to Azith we are hoping for long term remission of symptoms. And I am very, very hopeful that this first immunotherapy on our younger son will offer him a chance for improvement as well.

     

    We r still going to follow up with Lyme testing through Igenex for both the boys and DH and myself, although DH and I are convinced based on our Western Blots through Labcorp that we do indeed have the Lyme bacteria swimming around inside us. Still very questionable to me about the boys though. Only time will tell.

  13. Help Interpreting Lab Results

    in PANS / PANDAS (Lyme included)

    Posted

    From what I can see you should get on to a good Vit. D. supplement. I've been thinking about you all and hoping you are doing well. We are supposed to go see Dr. Infante next week. Still trying the more naturopathic/homeopathic stuff which has its ups and downs, but seems to be improving things little by little.

     

    God bless!

    Holly

     

    Hi Holly! Thanks for checking in on us. We are doing OK. We see Dr. Infante the following week. We are just trying to decide is there something else lying beneath...after 1 high dose IVIG and 3 additional lower dose ones and 1.5 years of penicillin, the OCD and tics are still rearing their ugly heads and the worst for him is the cognitive dysfunction. He is such a smart young man but he can't concentrate for nothing and it is very hard to watch him struggle with that and his handwriting. Dr. Infante said he would be willing to do another IVIG pending insurance approval and Dr. C resuming her testing (he is relying very heavily on it). For now, we are ruling out other issues and we did change antibiotics so we will see how that goes. It was difficult for him to justify some of the tests we wanted to do (OATS, Neurotransmitters, etc) so we went to see Dr. Rao and he was very helpful and agreed it is good to look at the whole child and not just fixate on strep alone.

     

    I think of you too Holly and am sorry we never were able to really get together! Keep up the good fight and stay in touch!

     

    Best,

    Cindy

  16. Help Interpreting Lab Results

    in PANS / PANDAS (Lyme included)

    Posted

    DH results:

    CD57 low but not below 60

    Western Blot: IgG P58 positive, IgM P23 Positive

    Vitamin D: 11.4 (normal 32-100)

    antiDNase B - 340 (normal below 85) Thought this was interesting. We had not tested this yet even with PANDAS dx. Any thoughts?

     

    My results:

    CD57 44 (reference 60-360)

    Western Blot: IgM P23 positive

    Vitamin D: 26 (normal 32-100)

     

    DS8: PANDAS dx in 2010, high strep titers, CamK 164 and D2 neuronals significantly elevated; has had 4 IVIG's and been on Penicillin for one year (we just switched to Zithro)

    CD57 42 (reference 60-360)

    IgG, Sublass 2: LOW (still low like it was last Summer when we got PANDAS dx)

    Western Blot: IgG P41 Positive

    Vitamin D: 18 (normal 32-100)

     

    DS6: Suspected PANDAS. Never had high strep titers, CamK 179 but no elevated neuronals; just started on Zithro prophylactic

    CD57 23 (reference 60-360)

    IgG, Sublclass 2: LOW (was not below normal last summer but is now)

    Western Blot: Nothing Present

    Vitamin D: 15 (normal 32-100)

     

    So now I am just confused. Should we pursue further Lyme testing since some bands were positive? I do not EVER recall being bit by a tic, but DH has pulled "hundreds" off him in his lifetime growing up outdoors in the country, hunting and fishing. Is this a "where there is smoke there may be fire" kind of thing? I am just overwhelmed now. Could I have gotten it from him and then passed to the kids? Is one or two bands even worth further testing? All co infections in both boys (did not test DH or myself) were negative as was Myco P.

     

    Any thoughts or advice is greatly appreciated!

     

    Cindy

  17. Help Interpreting Lab Results

    in PANS / PANDAS (Lyme included)

    Posted

    DH results:

    CD57 low but not below 60

    Western Blot: IgG P58 positive, IgM P23 Positive

    Vitamin D: 11.4 (normal 32-100)

    antiDNase B - 340 (normal below 85) Thought this was interesting. We had not tested this yet even with PANDAS dx. Any thoughts?

     

    My results:

    CD57 44 (reference 60-360)

    Western Blot: IgM P23 positive

    Vitamin D: 26 (normal 32-100)

     

    DS8: PANDAS dx in 2010, high strep titers, CamK 164 and D2 neuronals significantly elevated; has had 4 IVIG's and been on Penicillin for one year (we just switched to Zithro)

    CD57 42 (reference 60-360)

    IgG, Sublass 2: LOW (still low like it was last Summer when we got PANDAS dx)

    Western Blot: IgG P41 Positive

    Vitamin D: 18 (normal 32-100)

     

    DS6: Suspected PANDAS. Never had high strep titers, CamK 179 but no elevated neuronals; just started on Zithro prophylactic

    CD57 23 (reference 60-360)

    IgG, Sublclass 2: LOW (was not below normal last summer but is now)

    Western Blot: Nothing Present

    Vitamin D: 15 (normal 32-100)

     

    So now I am just confused. Should we pursue further Lyme testing since some bands were positive? I do not EVER recall being bit by a tic, but DH has pulled "hundreds" off him in his lifetime growing up outdoors in the country, hunting and fishing. Is this a "where there is smoke there may be fire" kind of thing? I am just overwhelmed now. Could I have gotten it from him and then passed to the kids? Is one or two bands even worth further testing? All co infections in both boys (did not test DH or myself) were negative as was Myco P.

     

    Any thoughts or advice is greatly appreciated!

     

    Cindy

  23. Zithro Dosage

    in PANS / PANDAS (Lyme included)

    Posted

    So Dr. I has called in Zithro prophylactic for the boys. Not sure what dose until I pick it up, but I assume it will by 200 or 250mg pills. Now he tells us he is doing the Swedo prophylactic dose of 2 pills one day per week. Ummmm okay? That means literally two pills one day out of seven. Wth? He was taking 250mg of penicillin every day. I am confused and concerned this is not enough. Any thought?

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