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Wilma Jenks

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Everything posted by Wilma Jenks

  1. This is what happened. Dr. B. is treating for PANDAS and pre-certifying us for IVIG. We had the LYme test done with Scott Smith and then followed up with Dr. Beals. Co infections was never tested, and Dr. B. wanted it done. I called Dr. Beals to ask if it could still be done with left over blood at Igenix. Dr. Beal said even if we test for co-infections, it is only 50% accurate (i think that was the percentage.) and he did not encourage it. So, I did the test anyway... and it comes back possitive and Dr. B. wants to treat for Lyme now. I made an apointment with Dr. Jones. My girl is currently on bactrim and finishing up a steroid burst. The bactrim makes her insomnia and OCD worse at night so far. Perhaps it is die-off.
  2. My short response: No. It can be both. My long response: Good question and probably no definitive answer. Bartonella is also known as Cat Scratch Fever. I remember that when my wife was pregnant, they wanted her to stay away from kitty litter duty as (apparently) bartonella can be transmitted via cat fecal matter. There are tens(?) of different bartonella strains as well. So - while your child could have picked it up from a tick, they could have picked it up elsewhere. Wikipedia states: "Bartonella are transmitted by insect vectors such as fleas, sand flies and mosquitoes." In my humble opinion, it will do no good trying to figure out how your child picked it up is my real point. It is good that you know and can begin appropriate treatment. Our son's CaM Kinase II score was 126. That is on the low end for PANDAS. We started on the Pandas path and have ended up on the Lyme + co-infections path so I e-mailed Dr. Cunningham making sure she could include this in her studies. Her reply (in part): "His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses, but we will also look at his anti-neuronal antibody titers to our 4 antigens." I do not have the background to fully understand the significance of her statement. Also, your child's score is well into PANDAS land as I recall so clearly different from my son. Our LLMD noted that she equates raging (particularly raging) and OCD with bartonella. Here is where my beliefs are taking me today....First, I do not know how one separates PANDAS symptoms from Lyme from co-infections. From everything I know and remember, there is a lot of overlap. I am falling more in the MCIDS - Multiple Chronic Infectious Disease Syndrome camp. If the strep bacteria is the only culprit then I guess one only has PANDAS. But for most of us, we are finding multiple infections. Many have immune system issues to one degree or another. Theory behind MCIDS is that each bacterial or I suppose viral infection weakens the immune system just a little bit more. There are differences in symptom displayed which I would attribute to genetics, age of infection(s), sequence of events, and moon phase We will probably never know. Since you have a positive for bartonella, I would recommend working with a lyme literate doctor. I have seen no indication that the leading PANDAS doctors really know how to handle lyme and co-infections. As far as I know, the treatments for lyme/bartonella might take care of strep along the way. I do not mean to imply that PANDAS treatments are not necessary. Each case is unique. I'm just a parent trying to find answers so please do not accept my word on that. Find a good LLMD!! Having followed some of your post, I know that you have had a tough time - but you are hanging in there! Well - time to appreciate yourself and your tenacity, you've started finding real answers. As others have told me, this still won't be a quick fix (so hang on) but you have some real direction to proceed now. I am thinking about writing my own book on our travels so I can print a dozen or so copies and give them as Christmas presents to all the doctors who did not believe us! Should I save a chapter (or ten) for your story? Good luck! bill
  3. I have done the Lyme test, and then the "31" test, I think it's called. Then co-infections test. I did the Cam Kinase and tons of blood work. Lots of urine and blood tests. Are there any specifically that you think she should have?
  4. Half a walnut sized lump under her ear at ten days old. Sinus infection on MRI. Restless Leg Syndrome. SEVERE insomnia laden with OCD (Do Lyme people get OCD, or is the PANDAS part?) High clostridia Cam Kinase of 166. Not only OCD, but very odd psychotic behavour. Very distorted thinking. Lyme doc. has her on steroid taper with bactrim at the moment. He wants to add in something called biacin (spelling?) The bactrim makes insomnia much worse. Goes to sleep at 6am. Sleep deprivation does not help. I made an appointment with Dr. Jones. Dr. Beal in Maryland said the tests are not accurate and even if she tests possitive for bartonella, there is no way to know. She is super super sick.
  5. It was Igenix but she was agitated and sick from day one in the hospital. What, were there tics in my bed or something???? I don't get this.... So should I trash the PANDAS diagnosis? and IVIG? I heard IVIG is dangerous if you have Lyme. Now did the sinus infection on the MRI mean nothing and the swollen gland under her ear at ten days old mean nothing???
  6. My child is psychotic. She is being treated for PANDAS. We just found she was positive for bartonella. Her PANDA specialist said the bartonella is what is causing the psychotic symptoms. Is bartonella considered Lyme disease. She was never near a tick, and she had these psychotic symptoms since birth. Does this mean the the Cam Kinase of 166 means it is not PANDAS and perhaps its just Bartonella now???
  7. My child just tested possitive for bartonella. Ugh!!! I don't get it...she was sick day one in the hospital. There were no ticks around???
  8. I really like this doctor, but I can never get through to him. I even email the nurses and can't get an answer for over a week now. I know he is super busy trying to help all these poor children. I guess the best way to do it is schedule a phone consult.
  9. Is this a spinal tap that is needed. If the treatment is similar to the PANDAS, why do we need 2 test 4 it????
  10. Such great news!!!! My girl dressed herself and got into bed last night w/ much less riturals. It looked like she actually slept. Usually she does her riturals in her sleep. OHMYGOSH. I may see her a mess 2day again, but I am celebrating EVERY little happy moment I can. THIS REALLY HAS NEVER HAPPENED.
  11. Never heard of it but will look into it. Would steroids help in regards to NMDAR???
  12. I saw the steroids start to make her aggressive, which is normal, I hear. I saw very very small improvement. She was able to get herself dressed for bed before 2am , which she usually can't do...because there are so many rituals. I see the constant repeating of the same sentence over and over calm down. She was able to take a shower a couple of times. She NEVER showers because of intrusive thoughts "constantly pulling her away." She still flops around in bed all night and does some rituals throughout the night, but perhaps the steroids are getting in the way of sleep too. She sleeps very late in the day because she is up all night. Sleep deprivation has never worked for her. You can keep her in gymnastics all day long for weeks, and she still does not get tired. I gave up trying to wake her at the crack of dawn to see if I could tire her out. She just yells that her brain is on fire. :0( Do you think even this small improvement is a good sign????
  13. My child's EEG showed "abnormal" and... her MRI, showed sinus infection. I guess I don't need to do anything else if the steroids look like there helping a bit.
  14. Dr. B. had me increase the steroids to 50mg. for 3 days. At the end of 3 days he has me update him, typically he says stick w/ 50mg. for 3 more days... (total of 6 days on steroids (50mg)... and a total of 14 days on steroid all together.) ]She was on Bactrim for 4 days, but she was pulling all nighters. I am suppose to drop steroids to 40mg. today, but he wants me to talk to him first. There is a good chance he may want her to stay on the 50mg, but it is too activating to give it late in the day. It would be helpful to get an answer in the morning if possible. If I don't get an answer, can I just give the 50mg. again today? I definitely see small improvements but she is getting a TEENY bit aggressive but. She is not on any antibiotics at the moment. Azith. made her really wild Bactrim kept her up until 6am. Pulling all nighters. Augmentin gave her rashes. She does not get hungry on steroids either, which I feel is strange. Aren't they suppose to make everyone hungry?
  15. OVer all I see a bit of improvemnt since starating the steroid burst. Fingers crossed.
  16. OVer all I see a bit of improvemnt since starating the steroid burst. Fingers crossed.
  17. We have done EEG's and MRI'S What do the other brain tests show??? Would they be helpful??? for a kid that sits in front of a TV all day long with severe OCD. She is not looking 2 good on the steroid. Doc. took her off Abx. cause it kept her up til 6am. Man, I am not sure what else to try. We are scheduled 4 IVIG, but if the steroids didn't work....not sure that will have any effect.
  18. My child gets bonkers with B6 and Zinc, but I will look into it.
  19. Does that pyroluria have anything 2 do with amonia levels? would scott smith or dr. trifeletti have checked for that when they did all of the blood work. it sounds famiiarl. Two pdocs. for sure not bipolar. she also never had any good moments. she was always festering. that is the only word that describes her. she looks better these days though. steroids are the only drug we have tried so far that did not make her worse. i see some improvement but i see her getting very tired and grumpy during the day. nights are slightly better. we tried all of the bipolar drugs too though.
  20. she still has pretty severe OCD at night after 12 days on 50mgs. of steroids. do u think it could still work after some more time? how highh can u go on these steroids?
  21. Is there a really simple book that would help my child understand what is happening to her? She has a really hard time reading. She is 12 but needs simple simple. Even a picture book with few sentences. She is so confused and agitated that she never even really asks about her OCD, but perhaps I could have the book lying around in the event she ever wonders.... For me, I was gong to buy "Saving Sammy" and "Freeing my child from obsessive compulsive disorder". Any others that you could recommend?
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