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Hmrz

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Everything posted by Hmrz

  1. Hello everyone. We are 5 weeks post ivig and i am wondering if what we are seeing is typical. I have seen improvement and very abrupt backslide. We changed his antibiotic from augmentin to omnicef and for 4 days it was like the dark clouds parted. Then suddenly after an amazing day yesterday, the late afternoon brought sensory noise issues that he could not handle, agressive angry behavior and what seems like ODD. Is it common post ivig to go from one extreme to the other? I want to believe that things are moving in the right direction but I guess after the last few years i am scared to hope. Once again thank you for advice and patience.
  2. From what I've researched it takes a while for it to work. Hopefully someone will give us some details.
  3. We haven't started it yet. I want to wait and see what difference the omnicef makes before adding it.
  4. Can anyone share experiences with this and share dosage information? Also considering vayarin. Would love any info on how it helped. Ds9 4weeks post ivig 2months post t&a 8months on 8ml aug 2xdaily Thank you
  5. Thanks for the response. It is wonderful to hear about great results that gives me hope. My son is 9(birthday 1/19) he had his tonsils removed 21/2 months ago. I thought I was prepared for anything that would happen after ivig but I guess all the reading and researching in the world doesn't prepare you for an actual life experience. The anger and rage attacks were the first signs of pandas we saw when this began. He also never experienced any tics until ivig. Now he has a throat clearing about every 10/15 min.
  6. My son had ivig feb 26/27 and has had two pretty significant rages since. At first he seemed so different but now I wonder if that was some kind of placebo effect. I have read everything I can find about turning back the pages and herxing but I guess I am now wondering if I'm just trying to make all the info fit my situation. I don't want to lose hope and give up. I feel so lost and alone. He is not impossible acting all the time which makes me wonder if turning back the pages even applies. I guess I would just like to know if I need to change everything I'm doing. He had HD 2g over two days. Sorry this is so disconnected. The huge knot in my chest and stomach is giving me enormous anxiety. I would love to talk to anyone with advice or anything that applies.
  7. We are now day 6 post ivig #1. We were seeing great improvement. Even my ds9 said he felt different inside and all the bad was going away then last night out of nowhere an hour rage. I had to physically restrain him to keep him away from his brother. It was an hour of hitting kicking name calling and saying he wanted to kill us. Then as quickly as it started he was fine. He apologized and went on with his night. I wish I could rebound so quickly! When we talked about it he said i could have stopped but I wanted to get all the anger out I was just so mad. Is this turning back the pages? Herxing? Did anyone else experience immediate improvement then spontaneous rage?
  8. Thanks for the reassurance. It's amazing that I have spent hours reading and researching so I feel so prepared and educated on what could happen but when your living it all that prep goes out the window! Things have definitely improved.( I keep typing that and deleting it because I'm terrified to say it on record.) he had body aches yesterday and a very mild headache but his spirits were great. He had a mini meltdown when his homeschool teacher arrived in the afternoon.( he has Carlson hospital homeschool, but its difficult to get him to do any work at all) he finally calmed down and gave the teacher a tutorial on a new lego set he put together. I saw that fight or flight anxiety when she knocked on the door. He says he wants to go back to school but that seems so far beyond where we are. All in all I can't imagine that the ivig itself could have gone any better so now the wait to see the effects.
  9. Second day done and it was as good as day one. I secretly thought in my head that he was already well on his way to recovery because I felt like I saw such a lightness and joy in him. Then hours later he seemed to have a weird episode that turned into a mini rage. When he finally started using his words again he said he has dizziness and a headache and I am guessing the behaviors go along with that. I put in a call to acreedo and they said they will return my call after a bit of research. Somewhere in me I know that this must be normal because I have been able to benefit from the experiences of everyone on this forum. I'm just a little worried about the bizarre behavior.
  10. First day of IVIG done and ds did amazing. I have no idea what the result will be but today was a good day, I'm so proud through fear and anxiety my little guy with a tear in his eye said," lets do this thing before I change my mind."
  11. I read a few post that stated that it was a good sign. Of course I am new to this and I would love to hear from others with more experience.
  12. I have started pushing liquids for the ivig on Wednesday. I can't tell you how valuable it is for me hearing all of your stories and experiences.I spoke with our nurse today and she was very reassuring.she has worked with other pandas kids so that helps. Has anyone premedicated for ivig?
  13. Thanks for the support and advice. My son had his tonsils out 4/5 weeks ago and he never took the anti nausea meds. I will call his doc and see if I can use those if needed. I hear that a headache after infusion is a good sign. Never thought I would hope for that! As far as an upbeat nurse, I'm hoping that the nurse they send is experienced in pediatrics. I also has tried to schedule visitors through the day if he is able. ( no kids just Auntie and other adults that love him) that is very tentative. Hoping that the ivig will help him heal enough to return to school. He has missed so much life already. Just pray that when we get to the other side of this nightmare he will have an experience that make him a stronger more compassionate man. Holly AkA Pollyanna
  14. That looks great I will check it out although we are getting the meds from acreedo so I'm not sure we will qualify. I will give them a call. Thanks
  15. Thank you so much for your response T_mom. After lurking for some time and reading all the post it is so comforting to have a nonjudgmental oasis. This disease has really shown me the beauty of finding a support system and community. There's my silver lining! The doctors order does include steroids through the IV for the 2 days he is having the ivig. Also Benadryl and Tylenol. He will continue with abx after. It's such a mixed bag of emotions. Hoping for the very best but not wanting to need it so much that it is a crushing blow if we don't have a possitive result.
  16. My ds9 is having his first ivig next week in our home. I fear he will not be able to follow through because of his fear of the iv. Any suggestions about how to prepare him? Also I know each situation is unique but what was the first sign after ivig that you were on a good path for recovery?
  17. Lyme disease AB blood is the test listed. I will def check out the book. Childrens hospital lab did the less exotic labs and the ones that took more time were through quest labs.
  18. We had pretty extensive blood work done and I think that you are absolutely correct. Low neut% high lymph% high mono%high aso and high Ana low WBC, Lyme neg. It seems from my research that viral is definitely part of the picture. I have been reading about valtrax and positive effects, any thoughts? Also does anyone have advice about going forward with the lumbar punch? As always thank you for taking the time and energy to help.
  19. We are trying to find our way. I would welcome any help. DS 9 dx pans, sep anxiety mood dis nos. if anyone has Los Angeles based referrals please share!
  20. Thank you so much for responding. We appealed immediately after the denial and were again denied. They did not dispute ivig was the proper treatment they just said any treatment for pandas is experimental and therefore not covered. I know our doc wants to do further testing including a spinal tap. I'm not sure if that would help with a encephalitis dx. We are debating paying out of pocket for ivig. My ds was put on abilify and zoloft when this all started and I have weaned him down to the lowest possible dose. ( by the way those meds were a breeze to get!) he also had his tonsils removed about a month ago but we did not get the positive result we had hoped for. Sorry I know this is coming from all directions and scattered, I just feel a little less alone after your responses!
  21. My ds is 9 and was dx with pans recently. His symptoms started in December 2012 and it has been up and down since then. We finally explored pandas about 5 months ago and started abx (aug/clav) after 2 months did 5 day steriod burst with good results. Although behaviors improved dramatically we have never gotten back to baseline. Our ped sent us to childrens hospital neurology dept and they did ext bloodwork. That is where his dx came from. The neurologist prescribed ivig which was denied by insurance. We then were referred e to rhuemotologist that said we needed further testing but saw nothing remarkable. We just saw a pediatric infectious disease specialist at cedars Sinai pediatrics and she told us with the amount of antibiotics our ds has been on all symptoms would have cleared by now and the symptoms are prob psychiatric and the improvement coincidentally happened at the same time as treatment. That because he's still not able to go to school it is not medically related and if it were her child she would take him off strong abx. I guess I feel a little beaten down and I'm not sure what to do. If anyone has any imput or help I could really use it. I'm starting to doubt my instincts.
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