I would like to hear about the healed. Again if you would.

[EAMom]

Welcome John,

 

He still has complex vocal tics, and is easily aggravated, but these things are fading in occurrence.

 

 

I am surprised Dr. K. is not keeping your son on long term abs.

 

Many/most kids on this forum are on long term abs (some can manage lower dose prophylaxis, but others require full-strength abs).

 

I don't know if you had a chance to see Buster's FAQ...that is a helpful thread. http://www.latitudes.org/forums/index.php?showtopic=6266

 

My dd has been on Azith 250mg/day (she's 54 pounds, now 9.5 years--so that's about full-strength) since June 08. She also had IVIG in Aug. 09. She may be one of the more severe PANDAS cases (at her worst at age 7.5 years she had PANDAS anorexia nervosa with debilitating OCD which landed her in the hospital for 6 days b/c of acute food refusal/malnutrition)...when we tested her CaM kinase ll in July 09 (after a H1N1 exacerbation) her level were the highest Dr. Cunningham has ever seen (above even the SC kids). She's doing much much better now...we are cautiously optimistic but wouldn't consider her "cured".

[Charlotte Mom]

Welcome John,

 

He still has complex vocal tics, and is easily aggravated, but these things are fading in occurrence.

 

 

I am surprised Dr. K. is not keeping your son on long term abs.

 

Many/most kids on this forum are on long term abs (some can manage lower dose prophylaxis, but others require full-strength abs).

 

I don't know if you had a chance to see Buster's FAQ...that is a helpful thread. http://www.latitudes.org/forums/index.php?showtopic=6266

 

My dd has been on Azith 250mg/day (she's 54 pounds, now 9.5 years--so that's about full-strength) since June 08. She also had IVIG in Aug. 09. She may be one of the more severe PANDAS cases (at her worst at age 7.5 years she had PANDAS anorexia nervosa with debilitating OCD which landed her in the hospital for 6 days b/c of acute food refusal/malnutrition)...when we tested her CaM kinase ll in July 09 (after a H1N1 exacerbation) her level were the highest Dr. Cunningham has ever seen (above even the SC kids). She's doing much much better now...we are cautiously optimistic but wouldn't consider her "cured".

 

My daughter just had IVIG 12 days ago. she is 10 (will be 11 in a week) she was diagnosed OCD when she was 6, but upon a thorough medical history evaluation by Dr K it was determined that her PANDAS onset was age 3 after sore throat that turned into severe pneumonia. There was a dramatic change in her behavior that we/her doctor attributed to “terrible threes.” For years she just continued to get sick (with her compromised immune system) she had two more pneumonias; sever, prolonged fever and rash – which now we believe was scarlet fever; constant ear infections, which led to getting tubes in ears; and constant bladder infections from age 3 to today – age 10. Can you imagine... all those years of thinking it was a behavioral issue... and not knowing what to do because nothing helped her with her meltdowns and clothes sensitivities among other things… it’s unbearable to think back on all she has been through.

 

I am terrified that because so much time has passed since her onset, that the treatment will not work. She has had seven years of the antibodies attacking her brain, three years of every kind of psychiatric medication you can imagine, and two hospitalizations... before we finally found this forum pointing us to the recourses that could actually finally explain to us what we were dealing with and why nothing, nothing - not ERP, not drugs - would help her.

 

Anyway, what I wanted to ask you EAMom is… what did the months from Aug 09 IVIG to now look like? What does much better look like? When did you start to notice improvements? Is your daughter able to go to school? Also, how many years passed between her onset and her IVIG? Did you have the same concerns I have about how much time had passed between onset and treatment? It seems the success stories I see are more likely to be only a year (maybe two) between onset and treatment.

 

I would also consider my daughter severe - although we did not get a Cam Kinase. She gets in fits of rage, yells, and gets destructive... picking off the keys of her computer keyboard, ripping up books, screaming at everyone, demanding that we not move or talk while she finishes touching the places we have touched or pointed to. She is so sick of having to touch that she demands that we carry her up and down the stairs – because it takes her forever to get up and down with all the touching she has to do. She has trouble controlling her bladder when she is upset. Did you experience such scary behavior? Did any of you experience such scary, violent/destructive/demanding behavior? How do you manage through this? How do you protect your other children from this? We have two younger children who are just so sick of this. They are beginning to act out in frustration and anger. This all got this bad this year around March (after her psychiatrist increased and added new medications – including LUVOX… it looked like serotonin syndrome set this off). Prior to that, we were mostly just dealing with very odd behaviors... sniffing, erasing, depression/embarrassment - odd social behaviors, having to go in and out the same way, occasional meltdown - but nothing aggressive. I long for those days now. I am just so concerned all this is now irreversible. Any encouragement from parents whose children have been through years between onset and help would be ever soooo greatly appreciated.

[sf_mom]

Just a quick reply... YES, I think your daughter can recover. Dr. K has helped many, as you know. He is absolutely wonderful and has been treating our son since Sept. Our son has had two IVIG treatments and is on higher dose antibiotic but about 98% better. I would say be prepared to retreat and if you witness a progressive decline. Dr. K will help to re-evaluate her condition as she recovers. AND, remember she was sick for a long time and IVIG is not an over night fix but you will see steady improvement. So, stay the course!!!!! Expect nothing less than full recovery.

 

-Wendy

 

 

 

 

My daughter just had IVIG 12 days ago. she is 10 (will be 11 in a week) she was diagnosed OCD when she was 6, but upon a thorough medical history evaluation by Dr K it was determined that her PANDAS onset was age 3 after sore throat that turned into severe pneumonia. There was a dramatic change in her behavior that we/her doctor attributed to “terrible threes.” For years she just continued to get sick (with her compromised immune system) she had two more pneumonias; sever, prolonged fever and rash – which now we believe was scarlet fever; constant ear infections, which led to getting tubes in ears; and constant bladder infections from age 3 to today – age 10. Can you imagine... all those years of thinking it was a behavioral issue... and not knowing what to do because nothing helped her with her meltdowns and clothes sensitivities among other things… it’s unbearable to think back on all she has been through.

 

I am terrified that because so much time has passed since her onset, that the treatment will not work. She has had seven years of the antibodies attacking her brain, three years of every kind of psychiatric medication you can imagine, and two hospitalizations... before we finally found this forum pointing us to the recourses that could actually finally explain to us what we were dealing with and why nothing, nothing - not ERP, not drugs - would help her.

 

Anyway, what I wanted to ask you EAMom is… what did the months from Aug 09 IVIG to now look like? What does much better look like? When did you start to notice improvements? Is your daughter able to go to school? Also, how many years passed between her onset and her IVIG? Did you have the same concerns I have about how much time had passed between onset and treatment? It seems the success stories I see are more likely to be only a year (maybe two) between onset and treatment.

 

I would also consider my daughter severe - although we did not get a Cam Kinase. She gets in fits of rage, yells, and gets destructive... picking off the keys of her computer keyboard, ripping up books, screaming at everyone, demanding that we not move or talk while she finishes touching the places we have touched or pointed to. She is so sick of having to touch that she demands that we carry her up and down the stairs – because it takes her forever to get up and down with all the touching she has to do. She has trouble controlling her bladder when she is upset. Did you experience such scary behavior? Did any of you experience such scary, violent/destructive/demanding behavior? How do you manage through this? How do you protect your other children from this? We have two younger children who are just so sick of this. They are beginning to act out in frustration and anger. This all got this bad this year around March (after her psychiatrist increased and added new medications – including LUVOX… it looked like serotonin syndrome set this off). Prior to that, we were mostly just dealing with very odd behaviors... sniffing, erasing, depression/embarrassment - odd social behaviors, having to go in and out the same way, occasional meltdown - but nothing aggressive. I long for those days now. I am just so concerned all this is now irreversible. Any encouragement from parents whose children have been through years between onset and help would be ever soooo greatly appreciated.

[T_Mom]

I am sure EAMom will pick up on your question CharlotteMom--I want to add that I do think your dear d will get better--but echo the fact that it will most likely take time, perhaps much time. Remain hopeful.

 

The 'scary' behaviors of book tearing, raging, etc. are not uncommon. Our d tore up numerous books and magazines at her worst. Your description of the "making you" cooperate as she touches things etc. is something many of us can totally understand. The scary "I will kill you--or myself" type of interactions are very disturbing. You have taken steps to try to help, that is all you can do and keep doing. Is she on vitamin D and probiotics, Omegas for brain healing--I really thought these were helpful last year.

 

Our d is on a full strength antibiotics right now (almost a full year)-- that has been so helpful for our child. Hopefully the IVIG will jump start the process for your d adding a reset to the ongoing full strength antibiotics. All the best of healing in the New Year--