Jump to content
ACN Latitudes Forums

Has anyone found complete success with IVIG? How many treatments to ac


Recommended Posts

We are only 10 days post-IVIG but I can already tell we are doing well. We had PEX in July and did well until November and then decided after seeing improvement on steroids (slipping back each time we tapered) that IVIG was needed. My son still has some mild symptoms but they seem to get better each day. The most amazing thing is his mood. He is pleasant, patient, respectful, helpful, and the list goes on. Yesterday my three year old knocked down this 4 foot tall roller coaster model he built (it took him 6 hours to build) and he was so calm. He actually told her it was OK. Normally this type of thing would have sent him into a rage. We also got his report card today and it is a 180 degree turn from last year when we were at our worst. To compare the two it is like they are talking about two different kids. I definitely think we are on the road to recovery!

Link to post
Share on other sites
  • Replies 42
  • Created
  • Last Reply

Top Posters In This Topic

To add to Buster's post...our dd got 2gm/kg total dose (1gm/kg per day over 2 consecutive days). This was the same as the Swedo dose and is a bit higher than the dose Dr. K normally uses (1.5gm/kg total dose).

 

Our dd is still on 250mg/day Azith and 1mg/day Prozac. She now weighs about 58 pounds.

Link to post
Share on other sites

I am so new to this forum and how to use it properly. Haven't learned how to copy quotes yet. I will say that I feel like I finally found a home. THANK YOU EVERYONE for your helpful posts! I have found so much hope and comfort through your posts. We are weighing the pros and cons of IVIG. I haven't heard enough stories for my boys age group that it has helped put kids in remission and reset their auto-immune system.

 

DCMOM thank you for sharing. And, please keep coming back!!! You are an inspiration. Everyone on here is an inspiration, as we all know how difficult live can be living with this illness.

Buster, we are trying to determine if it is indeed PANDAS/PITANDS it seems quite clear.

 

We first noticed episodes pre-puberty at age 12. While my dts17 (dear twin sons) both are high functioning, they overnight become someone else for about 14 days. Along with their physical illness: sinus pressure and headaches, usually an infection; they have mental symptoms: anxiety, total lack of concentration, sleeplessness, OCD, and intrusive thoughts that present a day or two before physical onset of illness. No tics.

 

We have experimented with several different types of abx, which usually clears up the sinus and behaviors at about 2 weeks from onset. When dts come out of their episode they have no idea they were not able to function. One of my dts's was asked by his psychiatrist to explain his difficulties during that time period, he said he didn't remember. It's truly like their body and minds are possessed.

 

As far as abx we have done zithro, amox., and now with Dr. K's guidance, augmentin 875 mg. and longer dosing than we have ever done in the past. There have been several instances where dts would recover and then days later revert back to OCD behaviors. I suspect that we didn't give the abx long enough.

 

We had our first phone consult with Dr. K. Thankfully we did, because the next week, dts had an episode. He was put on a 5 day course of steriod, overnight he became himself and even higher functioning. He was like a rock star solving math problems that were most difficult to solve. The day before he could barely add 2+2.

 

Since he responded so favorably I think Dr. K feels that IVIG one time with one year abx would be a permanent solution. Can this be true?

Link to post
Share on other sites
Since he responded so favorably I think Dr. K feels that IVIG one time with one year abx would be a permanent solution. Can this be true?

That does seem to be the case for many of Dr. K's patients and seems to be the case for us. So far, the single IVIG was the cross-over between continued motion abnomalities, mood lability, contamination fears, fine motor tremors.... It did take 14 days until we saw a positive effect, and then we saw another slight bump in the 16th week. But every day seems better. Trying not to jinx ourselves, but so far so good.

 

Buster

Link to post
Share on other sites
Both Dr. T and Dr. K sincerely believe that some historical accounts of childhood "possession" - like the real-life child whose story inspired the movie "The Exorcist" - were actually severe cases of rapid-onset PANDAS. Dr. K has grad students researching some of these historical accounts to look for evidence of infection prior to symptom onset.

 

Candidly, there were times immediately after our son's 2nd exacerbation (1st with "classic" PANDAS symptoms... he was originally diagnosed with Sydenham's chorea) when he behaved like he was possessed by demons. He was utterly unrecognizable, an alien and terrifying presence in our house who could not have been more different from the sweet, sensitive, pacifistic kid we had known.

 

So the classic rages, the violent behaviors, the screaming and vocal and motor tics, the wild emotional lability all fuel the "exorcist" comparison, I think. Many parents on this forum have experienced this... and, if you're like my wife and me, you prayed for divine intervention! :D

 

 

can someone clarify what "exorcist" symptoms look like/mean?

 

I was this about the Salem Witch Trials. Could some of their behaviors been PANDAS?

Link to post
Share on other sites

I spoke with the hemo/oncology dept. at Georgetown on Saturday (they administer the IVIG for Dr. Latimer) They told me Dr. Latimer uses 1g/k per day a total of 2g over to days for every treatment, every child. This is the same dosage as Buster and EAmom's dd had. So all the parents who have been calling Dr. Latimer re: dosage, you have your answer! It's nice to know that Dr. K and Dr. Latimer use a similar high-dose treatent that has shown to be effective.

 

 

To add to Buster's post...our dd got 2gm/kg total dose (1gm/kg per day over 2 consecutive days). This was the same as the Swedo dose and is a bit higher than the dose Dr. K normally uses (1.5gm/kg total dose).

 

Our dd is still on 250mg/day Azith and 1mg/day Prozac. She now weighs about 58 pounds.

Link to post
Share on other sites
I would like to add that I am very interested to see if anyone responds. I realize the possibility that those parents who receive IVIG, and have complete success, may not return to our little family/forum. I implore those who are doing IVIG now- to not forget us. My dd had plasma pheresis in October, and is doing very well since. She is, however, not cured. My best case scenario hope is that over time her pandas reactions diminish- making this disorder very manageable. I have made a promise to myself to remember to update the forum on our success (fingers crossed) every 6 months to a year. PANDAS has made (best case scenario) a lasting imprint on myself, my dh, and my parents- hopefully not so on my children.

Well said. If we get "cured" I want to continue the fight as well.

Link to post
Share on other sites

My daughter will be having IVIG most likely next week with Dr. Bouboulis.

 

We are still discussing the dosage which will be either Dr. K's 1.5g/k total over two days or 2g/k over two days. We were schedule to have it through Georgetown/Dr. Latimer today but Dr. Latimer chose to abruptly cancel it on Saturday. (a longer story in which I care not to openly discuss on the forum at this time). :D

 

I can tell you that Dr. Trifiletti, Dr. Bouboulis and most recently Dr. K (Dr. B consulted with Dr. K via telephone today re: Lauren) all believe that Lauren has PANDAS. They all also believe that she may benefit from IVIG as Lauren's sneezing tic cut in half after day 6 of azith, the day we increased the zith from 250mg to 500mg. Lauren went from sneezing 25x a minute to 10-12x a minute. We than added a 5 day pred/steroid burst that caused some 3-4 minute pauses in between her sneezing tic, and she continued to improve through the end of the first 30 days of azith, plateauing (sp?) at 3-6x a minute. That's when we consulted with Dr. B. He switched Lauren to 875mg augmentin bid and put her on a super high 30 day tapered pred/steroid burst. He also suggested that we check the entire family for elevated aso titers (lauren's sister had just tested positive aso) and if found, treat as well with abx fir 30 days. We know our other, younger daughter is a carrier as she has tested positive by throat cultures many times, in the past, with no symptoms. My husband and I both cane back with positive aso/antiDnaseB titers as well which we were told could be the reason why Lauren plateaued on the azith because there was still active strep in the house. So, for those of you still reading this forever post, I will continue Chapter 2!

 

Lauren started the augmentin and heavy, tapered steroids on 12/23. The rest of the family started on 30 days of azith at the sane time. On Christmas eve Lauren started having 20+ minute pauses between her sneezing tic. I was delighted but cautiously optimistic. When Lauren steroids decreased in dosage we started losing her long pauses. Dr. T & Dr. B both said that everything that happened to Lauren just makes a better case of PANDAS and that there is inflammation in the brain but steroids and abx alone (mostly because you can take steroids forever) weren't going to fully eradicate the tick. That's why they have suggested IVIG.

 

I want to stress that we have been over cautious in how we treat/diagnose Lauren as to not put to many variables in place at once so we can understand what works and what doesn't, correctly diagnose and treat the best that the doctors know how to do for now. Because of the media attention surrounding Lauren this approach also makes sense.

 

So coco, there you have it! Hope I answered your questions and more!

 

Lynn

 

Laurenjohnsonsmom -- are you going to be doing ivig or plasmaexchange? You have seen/spoken with all the biggies, what's their recommendation? Sorry if I missed this in a prior post.
Link to post
Share on other sites

Reactive,

 

I just have to say I LOVE your forum name as it sounds like a superhero name and you ARE a superhero to fight for your child!!!

 

I would like to add that I am very interested to see if anyone responds. I realize the possibility that those parents who receive IVIG, and have complete success, may not return to our little family/forum. I implore those who are doing IVIG now- to not forget us. My dd had plasma pheresis in October, and is doing very well since. She is, however, not cured. My best case scenario hope is that over time her pandas reactions diminish- making this disorder very manageable. I have made a promise to myself to remember to update the forum on our success (fingers crossed) every 6 months to a year. PANDAS has made (best case scenario) a lasting imprint on myself, my dh, and my parents- hopefully not so on my children.

Well said. If we get "cured" I want to continue the fight as well.

Link to post
Share on other sites

Thank you for the summary! I have been wondering what treatments you'd tried and what progress had been made.

 

My daughter will be having IVIG most likely next week with Dr. Bouboulis.

 

We are still discussing the dosage which will be either Dr. K's 1.5g/k total over two days or 2g/k over two days. We were schedule to have it through Georgetown/Dr. Latimer today but Dr. Latimer chose to abruptley cancel it on Saturday. (a longer story in which I care not to openly discuss on the forum at this time). :D

 

I can tell you that Dr. Trifiletti, Dr. Bouboulis and most recently Dr. K (Dr. B consulted with Dr. K via telephone today re: Lauren) all believe that Lauren has PANDAS. They all also believe that she may benefit from IVIG as Lauren's sneezing tic cut in half after day 6 of azith, the day we increased the zith from 250mg to 500mg. Lauren went from sneezing 25x a minute to 10-12x a minute. We than added a 5 day pred/steroid burst that caused some 3-4 minute pauses in between her sneezing tic, and she continued to improve through the end of the first 30 days of azith, plateauing (sp?) at 3-6x a minute. That's when we consulted with Dr. B. He switched Lauren to 875mg augmentin bid and put her on a super high 30 day tapered pred/steroid burst. He also suggested that we check the entire family for elevated aso titers (lauren's sister had just tested positive aso) and if found, treat as well with abx fir 30 days. We know our other, younger daughter is a carrier as she has tested positive by throat cultures many times, in the past, with no symptoms. My husband and I both cane back with positive aso/antiDnaseB titers as well which we were told could be the reason why Lauren plateaued on the azith because there was still active strep in the house. So, for those of you still reading this forever post, I will continue Chapter 2!

 

Lauren started the augmentin and heavy, tapered steroids on 12/23. The rest of the family started on 30 days of azith at the sane time. On Christmas eve Lauren started having 20+ minute pauses between her sneezing tic. I was delighted but cautiously opptomistic. When Lauren steroids decreased in dosage we started losing her long pauses. Dr. T & Dr. B both said that everything that happened to Lauren just makes a better case of PANDAS and that there is inflamation in the brain but steroids and abx alone (mostly because you can take steroids forever) weren't going to fully erradicate the tick. That's why they have suggested IVIG.

 

I want to stress that we have been over cautious in how we treat/diagnose Lauren as to not pilut to many variables in place at once so we can understand what works and what doesn't, correctly diagnose and treat the best that the doctors know how to do for now. Because of the media attention surrounding Lauren this approach also makes sense.

 

So coco, there you have it! Hope I answered your questions and more!

 

Lynn

 

Laurenjohnsonsmom -- are you going to be doing ivig or plasmaexchange? You have seen/spoken with all the biggies, what's their recommendation? Sorry if I missed this in a prior post.

Link to post
Share on other sites

THANK YOU LAURENJOHNSONSMOM........you are terrific, thank you for sharing.

When faced with the choice on the next step in treatment, it is so difficult. You want to help one thing and only pray it doesn't set another off.

I hope people will keep this thread going and share their successes/setbacks and IVIG experiences.

 

Once we decide to do it, I will share for sure.

Link to post
Share on other sites

Oh, forgot to add that Lauren had strep with the trunk rash (scarlatina/SF) at age 3 and Mycroplasma Pneumonia (sp?) at age 5-1/2, and right after the Mycroplasma Pneumonia she had this crazy urinary frequency for months, where she would tell me she had to go to the bathroom EVERY 5 minutes (no exaggeration), but had no UTI or bladder infection. Lauren also has has anxiety issues forever. She was medically diagnosed with social anxiety at age 5 (participated in a anxiety study in Boston at the time), had a 504 established at her school in first grade (around the time of the URI frequency and MP) because she went 6 months in the school lunchroom without eating because of anxiety. Currently I haven't slept in my own bed (without her climbing in with me) for months and I can't even go to the bathroom without her standing over me. I believe she is having improvment with the anxiety with the steroids/abx as far as the anxiety is concerned, (back before abx, 3 months ago, she would litterally attach to my body, like a leech, 24 hours a day, she had to be "touching me" at all times) it has not eliminated the anxiety but lessened it, for sure. :blink:

 

My younger daughter, I am confident is the carrier (tests positive on throat cultures with no symptoms). She has has unexplained "prickly rashes" often, in the past which I'm wondering was the undiagnosed strep. She falls within l"low-positive" on Madelines tests as she was have a mild onset of manifestation of symptoms when we had her tested. Again, she has mild symptems that you think "are normal" because you accomodate around them for so long (constant GI/stomach issues, unexplained nausea/vomitting, moodiness/irrability, eating issues, weather fears, mild ocd rituals, body imaging, paranoid weather fears, dark circles under the eyes, etc)..All mild/moderate at times.

 

Here's the scary part...My son (who just turned 18), I believe may also have PANDAS. Years ago, he manifested overnight in a more familiar "exorcist" fashion as most of you describe. We spent years on a roller coaster of doctors, psychiatrists, psychologists, group homes and short term psychiatric hospital stays. He went from an kind, caring, bright , honor roll student to "possessed", literally, overnight. He would tell psychiatrists that he had these "ocd ritual ie: like spending hours rearranging things on his dresser when something would accidentally get moved", he would wander the house all night, restless (he NEVER slept at night) and then he would sleep on his desk all day at school. I believe the psychotropic medications made him worse, not better. He would "cheek" his meds and hide them and when I discovered what he was doing he would and told him he would have to go back to the psych hospital if he could not take his meds, he would threaten to kill himself or me. :(

 

We had no idea what PANDAS was at the time, we thought it was mental illness, so we sent him to live with my in-laws to protect our younger daughters from his rages. Trust me, even though Lauren hasn't, displayed the "rages"so many of you describe, I know how you feel. Our son has a lot of anger over this, and hasn't spoke to us in over 2 years. We are currently trying have his aso/antiDnaseB tested and also hoping to send some sera out to Madeline Cunningham to test. Unfortunately, getting "him" to do this is another story as he is a "legal adult" now and makes his own decisions. Could this be mental illness? Possibly...could it be PANDAS?, maybe. I wold really like to hear from some of the other parents who have "older" teenage children with PANDAS (or suspected PANDAS) and "compare notes". I also would like to talk to the people who are adults that feel they have PANDAS, also. Please PM me or email me at laurensneezing@gmail.com

 

 

 

THANK YOU LAURENJOHNSONSMOM........you are terrific, thank you for sharing.

When faced with the choice on the next step in treatment, it is so difficult. You want to help one thing and only pray it doesn't set another off.

I hope people will keep this thread going and share their successes/setbacks and IVIG experiences.

 

Once we decide to do it, I will share for sure.

Link to post
Share on other sites

Thanks so much for your summary. It is helpful to hear what other families journey's include so we don't have to recreate the wheel every time. It is nice to hear that Dr. K. and Dr. B. are communicating. \

 

Let us know how IVIG goes and what dose you land on.

 

Ellie

Link to post
Share on other sites
Oh, forgot to add that Lauren had strep with the trunk rash (scarlatina/SF) at age 3 and Mycroplasma Pneumonia (sp?) at age 5-1/2, and right after the Mycroplasma Pneumonia she had this crazy urinary frequency for months, where she would tell me she had to go to the bathroom EVERY 5 minutes (no exaggeration), but had no UTI or bladder infection. Lauren also has has anxiety issues forever. She was medically diagnosed with social anxiety at age 5 (participated in a anxiety study in Boston at the time), had a 504 established at her school in first grade (around the time of the URI frequency and MP) because she went 6 months in the school lunchroom without eating because of anxiety. Currently I haven't slept in my own bed (without her climbing in with me) for months and I can't even go to the bathroom without her standing over me. I believe she is having improvment with the anxiety with the steroids/abx as far as the anxiety is concerned, (back before abx, 3 months ago, she would litterally attach to my body, like a leech, 24 hours a day, she had to be "touching me" at all times) it has not eliminated the anxiety but lessened it, for sure. :blink:

 

My younger daughter, I am confident is the carrier (tests positive on throat cultures with no symptoms). She has has unexplained "prickly rashes" often, in the past which I'm wondering was the undiagnosed strep. She falls within l"low-positive" on Madelines tests as she was have a mild onset of manifestation of symptoms when we had her tested. Again, she has mild symptems that you think "are normal" because you accomodate around them for so long (constant GI/stomach issues, unexplained nausea/vomitting, moodiness/irrability, eating issues, weather fears, mild ocd rituals, body imaging, paranoid weather fears, dark circles under the eyes, etc)..All mild/moderate at times.

 

Here's the scary part...My son (who just turned 18), I believe may also have PANDAS. Years ago, he manifested overnight in a more familiar "exorcist" fashion as most of you describe. We spent years on a roller coaster of doctors, psychiatrists, psychologists, group homes and short term psychiatric hospital stays. He went from an kind, caring, bright , honor roll student to "possessed", literally, overnight. He would tell psychiatrists that he had these "ocd ritual ie: like spending hours rearranging things on his dresser when something would accidentally get moved", he would wander the house all night, restless (he NEVER slept at night) and then he would sleep on his desk all day at school. I believe the psychotropic medications made him worse, not better. He would "cheek" his meds and hide them and when I discovered what he was doing he would and told him he would have to go back to the psych hospital if he could not take his meds, he would threaten to kill himself or me. :(

 

We had no idea what PANDAS was at the time, we thought it was mental illness, so we sent him to live with my in-laws to protect our younger daughters from his rages. Trust me, even though Lauren hasn't, displayed the "rages"so many of you describe, I know how you feel. Our son has a lot of anger over this, and hasn't spoke to us in over 2 years. We are currently trying have his aso/antiDnaseB tested and also hoping to send some sera out to Madeline Cunningham to test. Unfortunately, getting "him" to do this is another story as he is a "legal adult" now and makes his own decisions. Could this be mental illness? Possibly...could it be PANDAS?, maybe. I wold really like to hear from some of the other parents who have "older" teenage children with PANDAS (or suspected PANDAS) and "compare notes". I also would like to talk to the people who are adults that feel they have PANDAS, also. Please PM me or email me at laurensneezing@gmail.com

 

 

 

THANK YOU LAURENJOHNSONSMOM........you are terrific, thank you for sharing.

When faced with the choice on the next step in treatment, it is so difficult. You want to help one thing and only pray it doesn't set another off.

I hope people will keep this thread going and share their successes/setbacks and IVIG experiences.

 

Once we decide to do it, I will share for sure.

Oh WOW. I had no idea you have a son also...I am so sorry to hear about all his troubles. If you could just get him to realize what could be wrong...and have the testing done...I will be thinking of your family. Good luck.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...