Need some reassurance

[momofgirls]

Tami

I hesitate to write this as I do not want to jinx things for my daughter but you sound in need of encouragement so here is our experience. My daughter was diagnosed with PANDAS about 2 years ago. She has been symptomatic for 4 years but it took forever to get a diagnosis. We started with typical pandas treatment...antibiotics and steroid burst. She improved greatly with the steroids but the improvement did not last long. We did steroid tapers 3 months in a row and each time we saw less relief. We went forward with monthly ivig and it was a roller coaster. I then did a phone consult with Dr. K and he was against the monthly ivig and told us it would do more harm than good. He advised us to do the one high dose ivig and then stop. We followed his instructions and it did seem to help but again it was not complete and she started slipping again about 4 months out. Then we ran all the lyme testing and she was positive. We saw Dr. J and he started lyme treatment (lyme and bartonella). The next 3 months brought back all symptoms for my daughter and we lost any gains made with previous ivig. I remember thinking...how long can a herx last??? I actually went for a second opinion with another lyme doctor who uses ART. She was positive via ART for lyme, bartonella, mycoplasma, and virus. This doctor used a combination of herbs and antibiotics to work away at each infection (November 2010). At this point I felt determined to complete lyme treatment as an entire year on zythromycin and multiple ivig's did not erradicate any infection. Even though I saw periods of improvement, in my mind it was not true healing as the infections were never treated. The immune response may have been blunted some but the battle only really began with lyme treatment. I believe now based on symptoms resolution and ART that my daughter may have finally erradicated all her infections. Our last visit with our llmd revealed only a low level of lyme in cyst form. All other infections had cleared. Right now I think she has a few mild tics. She looks really good but is not perfect. What I want you to know is that it was very hard all through out lyme treatment. It seemed to take many months to really see an improvement. I will say that I felt like we would see improvement as each co-infection cleared only to be followed with more herxing as her body began to address the next layer of infection. Even the end of lyme treatment was very scary. You imagine this slow steady improvement as treatment goes on but it just wasn't like that for us. I share our experience to hopefully give you confidence to continue working at these infections. Steroids and high dose ivig are immune suppressing...that is why they are used to treat autoimmunity however I personally do not believe these will have any lasting benefit if the underlying infections driving the illness are not treated properly. I know we all have different views on this and I respect that but if your child has been diagnosed with a TBD then I would just prepare myself for a long bumpy ride. Its tough because being on the right combination of antibiotics and addressing co-infections is critical. I think it takes a long time to see sustained improvement because the herxing can be extended. I do think my daughter now has finally reached a stride and I hope she now can begin to heal. Gosh please don't let this post jinx my daughter! I do hope it helps.

[smartyjones]

I I do question my path all the time because I have not seen a positive lyme/bartonella on my sons labs. Yet I do understand how it hides and it is a clinical diagnosis

 

I know my son used to be such a sweet empathetic loving child. I know I didn't raise him to be this nasty and uncaring and unkind. into them (twins)

 

I know it's not them so where do I turn Pandas and lyme treatment is pretty much the same only lyme is multi antibiotics.

 

 

tami -- i am sorry to hear how things are for you right now.

 

i know what you mean and have been there -- like ds7 eating like a dog from a plate last summer at his cousin's birthday party and dh and i only happy he was ingesting food. as my sil (mother of the birthday boy) looked on - luckily, she's actually not judgemental but still -- all i can do is shrug and say 'you know he's been having trouble lately -- we're not actually condoning these poor manners.' or ds9 this past easter, threw his lego minifigure that my mom gave him, cried, stomped and yelled carrying on b/c it wasn't the one he'd hoped for. i remember carrying ds7 out of a rec center in full blown tantrum, with many onlookers star struck as i had to kick open the latch mid way up the door to get out of there, with screeching, clawing child much too old for that type of tantrum. and when they were younger i was so proud of how on the ball i was with manners and behavior.

 

where is the silver lining? i don't know -- perhaps it's only that i am no longer judgemental when i see a parent struggling -- i just so feel for the plight.

 

so i know it's troubling when the majority you're surrounded with don't seem to understand you're actually doing an amazing job as a parent but it just so doesn't seem like it on the surface -- whether tthey actualy do or not but you feel that's the scene to the outside world -- but all of us here get it and understand -- perhaps we should all go live on an island together -- we can take turns -- kid watching vs. margherita drinking.

 

i hate to throw this in for you -- but. . . i really question the role of viruses for some kids. we see an integrative MD who uses a form of ART. ds7 tested for lyme but that has never seemed to be his major issue. he had many infections, most troubling being strep and a virus. ds9 tested for most TBI and strep. his symptoms were more separation anxiety and nighttime anxieties. as those cleared, i unfortunately gave him a probiotic that caused trouble. recently, it seems his more inappropriate overreactions and strikeouts may be related to HHV-6.

 

i really do hate to suggest more testing and another path to follow. . . but, hav you discussed with your dr some of the viruses that can commonly be seen with lyme or can be problematic neurologically?

Edited June 29, 2011 by smartyjones

[Tamistwins]

Tami

I hesitate to write this as I do not want to jinx things for my daughter but you sound in need of encouragement so here is our experience. My daughter was diagnosed with PANDAS about 2 years ago. She has been symptomatic for 4 years but it took forever to get a diagnosis. We started with typical pandas treatment...antibiotics and steroid burst. She improved greatly with the steroids but the improvement did not last long. We did steroid tapers 3 months in a row and each time we saw less relief. We went forward with monthly ivig and it was a roller coaster. I then did a phone consult with Dr. K and he was against the monthly ivig and told us it would do more harm than good. He advised us to do the one high dose ivig and then stop. We followed his instructions and it did seem to help but again it was not complete and she started slipping again about 4 months out. Then we ran all the lyme testing and she was positive. We saw Dr. J and he started lyme treatment (lyme and bartonella). The next 3 months brought back all symptoms for my daughter and we lost any gains made with previous ivig. I remember thinking...how long can a herx last??? I actually went for a second opinion with another lyme doctor who uses ART. She was positive via ART for lyme, bartonella, mycoplasma, and virus. This doctor used a combination of herbs and antibiotics to work away at each infection (November 2010). At this point I felt determined to complete lyme treatment as an entire year on zythromycin and multiple ivig's did not erradicate any infection. Even though I saw periods of improvement, in my mind it was not true healing as the infections were never treated. The immune response may have been blunted some but the battle only really began with lyme treatment. I believe now based on symptoms resolution and ART that my daughter may have finally erradicated all her infections. Our last visit with our llmd revealed only a low level of lyme in cyst form. All other infections had cleared. Right now I think she has a few mild tics. She looks really good but is not perfect. What I want you to know is that it was very hard all through out lyme treatment. It seemed to take many months to really see an improvement. I will say that I felt like we would see improvement as each co-infection cleared only to be followed with more herxing as her body began to address the next layer of infection. Even the end of lyme treatment was very scary. You imagine this slow steady improvement as treatment goes on but it just wasn't like that for us. I share our experience to hopefully give you confidence to continue working at these infections. Steroids and high dose ivig are immune suppressing...that is why they are used to treat autoimmunity however I personally do not believe these will have any lasting benefit if the underlying infections driving the illness are not treated properly. I know we all have different views on this and I respect that but if your child has been diagnosed with a TBD then I would just prepare myself for a long bumpy ride. Its tough because being on the right combination of antibiotics and addressing co-infections is critical. I think it takes a long time to see sustained improvement because the herxing can be extended. I do think my daughter now has finally reached a stride and I hope she now can begin to heal. Gosh please don't let this post jinx my daughter! I do hope it helps.

Thank you so much for reaching out and sharing your story. I don't believe your daughter will or can be jinxed by stating she is doing better. I'm happy she finally got a better place. WHen my son began banging his head against hard objects I thought I would die. It was so heartbreaking to watch. Well that stopped after he went on antibiotic to treat a current strep infection, that's how bad strep is. It takes a normal healthy child and makes them do uncontrolable things that they wouldn't normally do. Well that improved and I should be insanely pleased but then we have all this other ###### surrounding our life that I forgot how bad some of the other things really were that have improved with meds and or IVIG. I am not familiar with ART. Where do you live? Can you tell me which LLMD you saw after Dr. J, is this your current LLMD?I wish your daughter only continued healing and don't ever be afraid to say she is doing well and to share your journey. It is encouraging for all of us who do not see the light at the end of the tunnel.

[Tamistwins]

I I do question my path all the time because I have not seen a positive lyme/bartonella on my sons labs. Yet I do understand how it hides and it is a clinical diagnosis

 

I know my son used to be such a sweet empathetic loving child. I know I didn't raise him to be this nasty and uncaring and unkind. into them (twins)

 

I know it's not them so where do I turn Pandas and lyme treatment is pretty much the same only lyme is multi antibiotics.

 

 

tami -- i am sorry to hear how things are for you right now.

 

i know what you mean and have been there -- like ds7 eating like a dog from a plate last summer at his cousin's birthday party and dh and i only happy he was ingesting food. as my sil (mother of the birthday boy) looked on - luckily, she's actually not judgemental but still -- all i can do is shrug and say 'you know he's been having trouble lately -- we're not actually condoning these poor manners.' or ds9 this past easter, threw his lego minifigure that my mom gave him, cried, stomped and yelled carrying on b/c it wasn't the one he'd hoped for. i remember carrying ds7 out of a rec center in full blown tantrum, with many onlookers star struck as i had to kick open the latch mid way up the door to get out of there, with screeching, clawing child much too old for that type of tantrum. and when they were younger i was so proud of how on the ball i was with manners and behavior.

 

where is the silver lining? i don't know -- perhaps it's only that i am no longer judgemental when i see a parent struggling -- i just so feel for the plight.

 

so i know it's troubling when the majority you're surrounded with don't seem to understand you're actually doing an amazing job as a parent but it just so doesn't seem like it on the surface -- whether tthey actualy do or not but you feel that's the scene to the outside world -- but all of us here get it and understand -- perhaps we should all go live on an island together -- we can take turns -- kid watching vs. margherita drinking.

 

i hate to throw this in for you -- but. . . i really question the role of viruses for some kids. we see an integrative MD who uses a form of ART. ds7 tested for lyme but that has never seemed to be his major issue. he had many infections, most troubling being strep and a virus. ds9 tested for most TBI and strep. his symptoms were more separation anxiety and nighttime anxieties. as those cleared, i unfortunately gave him a probiotic that caused trouble. recently, it seems his more inappropriate overreactions and strikeouts may be related to HHV-6.

 

i really do hate to suggest more testing and another path to follow. . . but, hav you discussed with your dr some of the viruses that can commonly be seen with lyme or can be problematic neurologically?

Thank you for your response. The forum is great because we can speak bluntly and tell all of the real issues we deal with our children and actually have others who understand and empathize. Rather than those who nod and think well it must be the way your disciplining or not disciplining that they act in such a manner. It's sad that I can't plan play dates for them, their childhood is passing by.Anyway, I am not familiar with ART and I don't mind more testing only I am sent dor bloodwork and then no doctor does anything with the results. I don't get why they send us in the first place.My son last year had strep , mycoplasma and EBV so I guess that means he is suceptible to viruses. Especially since he puts everything germy in his mouth.What doctor do you see?

[momofgirls]

will PM you with his name.