IVIG for dd9

[EAMom]

KeithandElizabeth...

did you post where you live? Maybe someone can recommend a local doctor?

 

(uurrrghhh. wimpy doctors who are afraid of antibiotics are so irritating. )

[KeithandElizabeth]

We are in the Boulder/Denver, Colorado area.

 

We have found a Pediatric oncologist/hematologist who is willing to do the IVIG. He has just never treated PANDAS per se. He did treat a 13 year old girl once who had Sydham's Chorea (spelling?) and saw a complete change in her. Hence, he is a believer. He treated her with PEX 3 times a week for 3 weeks and she has been fine ever since. I wonder if she actually had PANDAS because of the way he described her behavior.

 

Now I just need to send him the antibiotic articles.

 

Thanks,

 

Elizabeth

[EAMom]

We had our first day of school today (4th grade). I think it went really well. Dd9 seems to like her teacher (yeah!) One great thing is that he has alphasmarts in the class for the kids to use (not just for the kids with IEPs!). My dd was also brave enough to raise her hand and tell the teacher she had one of her own in her backpack.

 

[chrisw]

So happy things went well for all of you!! Sounds like progress!! I know you must be very relieved.

 

Christie

[Buster]

Hi Folks,

 

Thanks to all who have sent questions regarding our dd9. We remain in good shape two months post IVIG.

 

I will say that our initial 2 weeks were quite unnerving as all symptoms got suddenly much, much worse. It was like watching the last year on fast reverse. Symptoms came and went but interestingly in reverse order with the earliest symptoms being the last to leave.

 

Week 1: significant escalation of symptoms, movement disorders, tremor, contamination fears, vocal tic, very irritable

Week 2: continued escalation of symptoms. Very intense but short lived. Interestingly like watching last 6 months on fast reverse. Angry, lashing out, eating issues, handwriting issues.

Week 3: school starts. She's interested in school and handwriting has improved. Margins are much better. School teacher indicates dd9 is somewhat defiant in class.

Week 4: lots of itchiness. slight food restriction. dramatic fall off of symptoms. concerns about wearing glasses in public, measurement compulsions disappear

Week 5: calm, quiet -- some social anxiety when at a large family party

Week 6: more calm -- no rages for a week

Week 7: calm -- willingly does homework -- is remembering math facts, spelling is eratic, getting along well with sister

Week 8: calm, happy -- able to brush teeth alone -- first time in 2 years.

Week 9: calm, happy -- enjoys school, likes trumpet, some handwriting issues still, very slight verbal tic

 

It's really odd having relative calm in the house again. It's not 100% "normal" but most assuredly better than anytime in the past year (probably 95%). She still has a slight verbal tic and some underlying social anxiety, but all other symptoms are gone.

 

On the CaM Kinase, we ran a mini-longitudinal study here. Our dd9 was at:

183% not in exacerbation (April),

253% during exacerbation (June),

and at 170.5% on post prednisone burst (Aug).

and 119% at 6 weeks postIVIG (Sept)

 

It is still very much a research topic what the above means, but CaM Kinase II did seem to correlate with symptom severity.

 

Best regards,

 

Buster

[peglem]

Thanks for the update, Buster! I've been missing your super-informational posts here.

 

Such exciting news!!!!

This one, especially, gave me a burst of joy:

Week 6: more calm -- no rages for a week

 

Wow, no rages for a whole week, wow!

 

Fascinating CamKII numbers...

[T_Mom]

I agree!!! Wonderful to hear this great news--Thankful for you all.

TMom

[Iowamom]

Hi Folks,

 

Thanks to all who have sent questions regarding our dd9. We remain in good shape two months post IVIG.

 

I will say that our initial 2 weeks were quite unnerving as all symptoms got suddenly much, much worse. It was like watching the last year on fast reverse. Symptoms came and went but interestingly in reverse order with the earliest symptoms being the last to leave.

 

Week 1: significant escalation of symptoms, movement disorders, tremor, contamination fears, vocal tic, very irritable

Week 2: continued escalation of symptoms. Very intense but short lived. Interestingly like watching last 6 months on fast reverse. Angry, lashing out, eating issues, handwriting issues.

Week 3: school starts. She's interested in school and handwriting has improved. Margins are much better. School teacher indicates dd9 is somewhat defiant in class.

Week 4: lots of itchiness. slight food restriction. dramatic fall off of symptoms. concerns about wearing glasses in public, measurement compulsions disappear

Week 5: some social anxiety when at a large family party

Week 6: more calm -- no rages for a week

Week 7: willingly does homework -- is remembering math facts, spelling is eratic, getting along well with sister

Week 8: able to brush teeth alone -- first time in 2 years.

Week 9: enjoys school, likes trumpet, some handwriting issues still, very slight verbal tic

 

It's really odd having relative calm in the house again. It's not 100% "normal" but most assuredly better than anytime in the past year (probably 95%). She still has a slight verbal tic and some underlying social anxiety, but all other symptoms are gone.

 

On the CaM Kinase, we ran a mini-longitudinal study here. Our dd9 was at:

183% not in exacerbation (April),

253% during exacerbation (June),

and at 170.5% on post prednisone burst (Aug).

and 119% at 6 weeks postIVIG (Sept)

 

It is still very much a research topic what the above means, but CaM Kinase II did seem to correlate with symptom severity.

 

Best regards,

 

Buster

 

Buster-

 

Your post gives me hope! Our 10 yo son completed IVIG with Dr. K on Sat. He is of particular interest to Dr. K because he (& we) believe he was a very early onset PANDAS that has been mis-dx'd for years. Anyway, today was AWFUL. We had had a period of relative calm for three weeks. Yesterday, he turned on a dime late afternoon. I unpacked a knife from his backpack he was taking to school tomorrow. This is not my boy. His CaM was 184%---in Late JUly. Had been on Zith. This last year since he has been dx'd has been one protracted exacerbation with a few short periods of calm. It appears our period of calm is over, for the moment. I sent in blood the day before the IVIG and will do a post one as well. Dr. K believes we had the IVIG soon enough to help him.

 

Dawn

[Buster]

Thanks for the update, Buster! I've been missing your super-informational posts here.

 

I know, I know... I sort of went into retreat for a while -- even with all the data we had, it was hard to go through IVIG. Lots of worries about blood products and all the things we just don't know yet. Those first two weeks post-IVIG were the worst. I really started to worry we had just made things worse. I do think the mini-longitudinal data is really interesting. I realize it is totally anecdotal at this point but still, the shift from 183 to 119 somehow was really comforting.

 

I also want to stress that not everything is back to "normal." There's still a slight verbal tic -- a sort of irregular breathing. There also remains some separation anxiety. It's unclear to me whether these are learned behaviors i.e., now comfortable habits rather than obsessions/compulsions. Hard to say and we'll just have to see. But all the true obsessional items and complex movement/measurement rituals are gone.

 

Wishing everyone on this forum some quiet time,

 

Buster

[peglem]

Glad you took a break when you needed it. Its a scary prospect, especially when the 1st result you see is worsening of symptoms. So, glad you're seeing great improvements now. 100% would be fabulous, but in my daughter, even 20% better would be a miracle! Right now, I need to hear the anecdotal stuff, but, yeah,the CamK levels going down are impressive! So do you just have a closet full of those Cunningham blood draw kits?

[thereishope]

Even though you are intelligent, full of information, support, and a help to many....you are still a daddy taking care of his little girl. You deserve a break. Enjoy your family and those quiet moments when you sit and look at you daughter and realize what you have all accomplished.

 

 

 

 

Thanks for the update, Buster! I've been missing your super-informational posts here.

 

I know, I know... I sort of went into retreat for a while -- even with all the data we had, it was hard to go through IVIG. Lots of worries about blood products and all the things we just don't know yet. Those first two weeks post-IVIG were the worst. I really started to worry we had just made things worse. I do think the mini-longitudinal data is really interesting. I realize it is totally anecdotal at this point but still, the shift from 183 to 119 somehow was really comforting.

 

I also want to stress that not everything is back to "normal." There's still a slight verbal tic -- a sort of irregular breathing. There also remains some separation anxiety. It's unclear to me whether these are learned behaviors i.e., now comfortable habits rather than obsessions/compulsions. Hard to say and we'll just have to see. But all the true obsessional items and complex movement/measurement rituals are gone.

 

Wishing everyone on this forum some quiet time,

 

Buster

[faith]

I don't know Buster's child's history as I'm new over on this end of the board, but is the worsening of symptoms the norm with IVIG? did this happen to all who had it? This post scares the bejesus out of me. I would be sick thinking I made the wrong choice and this just made my child worse. But was this expected and everything has settled now? What was she like before the IVIG? were the symptoms especially difficult?

 

sorry to ask all this, I am just preparing myself for what may come. thanks.

 

Faith

[sf_mom]

Congratulations on your daughter's improvement. It is truly great news! I was planing on doing the Cunningham test at 6 months post IVIG but I think I'll follow your lead and have them redraw at 6 weeks as a comparative. We are now 17 days post treatment.... with only an occasional cough and blowing on the back of his hand when tired. We had two consecutive TIC free days on Saturday and Sunday and currently no anxiety or OCD.

 

By the way, I've been talking with Diana a lot and I think we live fairly close to each other..... we are over in Lindenwood. We have an appointment with Dr. Lewis on the 21st and I think he'll find my son's history very interesting as there is a strong link between Scarlet Fever that went undiagnosed, Kawasaki's and two children that are not genetically related and both are PANDAS. I know Fredrick Lloyd at PAMF found the information fascinating and can't wait to hear Lewis's response. Dr. K seemed think its possible that Kawasaki's is an extreme presentation of PANDAS but because the child is treated 5 days into high fever with IVIG the strep bacteria is stopped in its tracks. Sometimes they treat Kawasaki's with several doses of IVIG.... until fever subsides.

 

I've attached a brief history as I think you'll find it interesting too.

 

 

• Novemember 2007 (IMPORTANT HISTORY): Sunday, Novemember 4, 2007 we had a playdate with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Exactly 10 days after playdate our son had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Eactly 10 days after the start of our son's illness our 5 ½ month old baby boy started showing signs of a similar illness. However, our 5 1/2 month old symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 24 hours of our youngest getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. I believe the bacteria was stopped in its track due to the IVIG treatment provided to our son at day 5 of high fever. I asked if Kawasaki’s was contagious and explained my older sons symptoms. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s the week prior. I have recently discovered that our son‘s friend had peeling palms and feet (skin coming off in sheets) with a prior fever and rash at the time of playdate as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was diagnosed with strep throat Monday, Novemeber 5th, 2007 and treated with several courses of antibiotics. It was eventuallly determined he had weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. THE SWOLLEN GLAND DID NOT RESOLVE ITSELF UNTIL ADRIAN’S ADENOIDS WERE PULLED. Our sons friend, still suffers from headaches, daily joint pain, weak immune system, extreme shyness, seperation anxiety, OCD behavior, TICS, chapped lips with cold sores and is repeating Kindergarden. Our son's CaM Kinase score 124 – lower range PANDAS, blood draw taken 11 days post Predisone Burst which might have lowered his score. We had our son's STREP PNEUMOCOCCAL ANTIBODY TITER checked and he is deficient in 10 of 14 serotypes, ADRIAN’S CaM Kinase score 147 – mid range PANDAS. Adrian’s STREP PNEUMOCOCCAL ANTIBODY TITER were tested in 2008 and he has similar deficiencies. Thankfully, our other son who was diagnosed with Kawasaki’s seems to be fine. He is 2 years, 4 months old.

 

• July 2008: We believe that our son at 4 ½ years old contracted strep again but went undiagnosed. All I remember was, he was sick, had an ongoing cough/clearing of throat for 3 weeks so we finally took him to the Dr. He was diagnosed with sinusitis prescribed Amoxicillian, one to two days after starting amoxicilian he had a full body rash, neck to ankle and was switched to Azithromycin. Cough/clearing of the throat continued to persist so we took him back to the Dr. and was told at the time the clearing of throat was psychosamatic and that it would eventually go away (no additional antibiotics were perscribed)… Cough/clearing of throat did eventually wane after another 6 to 8 weeks but would crop up occasionally throughout year. Our son had NOT been prescribed antibiotics prior to this time frame. He was healthy, healthy… Only prior illnesses were Croup x 3, Flu – March 2006, Illness/Flu November 2007 outlined above.

 

• June 24th -27th, 2009: High Fever and Sore Throat. Had to sleep in his room to get him to settle. I thought he was restless due to fever.

 

• July 1st - 4th, 2009: Noticed Tic Behavior: Rapid eye blinking, clearing of throat, inability to sleep, moodiness. We had company this particular week so I might have missed some of his symptoms. Our son had a playdate on the 1st with a friend who immediately took ill afterwards. Rowan’s illness consisted of headaches, fever, full body rash but was never formly diagnosed of anything.

 

• July 2nd, 2009: I remember that our son was very moody this particular day – I took him to the Academy of Science Museum. On our way home, he slept the entire way which is very unusual for him to nap during the day.

 

• July 6th – 17th, 2009: Multiple-Tics: Shrugging of shoulders, heading tilting to left, flicking back of ears, clearing of throat, grunting, eye blinking, etc. OCD Behavior: sneeking off to wash hands (does not know why), insistant that he has to clean his hands prior to touching baby blanket (does not want to get germs on it), concerned about germs from a friend who spent the night. Other Symptoms: moody liability, separation issues at school, ongoing fears of a story about a snake, inability to fall asleep, bad dreams, night waking, complaining of aches, pains and itchiness every morning. I was so concerned I video taped his behavior at this time.

 

-Wendy

[EAMom]

I don't know Buster's child's history as I'm new over on this end of the board, but is the worsening of symptoms the norm with IVIG?

Buster is my dh. I e-mailed Dr. K. 1 week post IVIG b/c of the irritibiliby/mood issues and he said to give her 1-2 mo. He was right. After that first week she started to improve. Healing takes some time. The first week post IVIG was a hassle but really nothing compared to what we went through in Spring 08.

 

 

 

What was she like before the IVIG? were the symptoms especially difficult?

Just b-4 the IVIG she wasn't too bad. It was summer and there wasn't school stress. She had had an exacerbation the month b-4 (from the flu) where her CaM kinase ll was 253...but that was controlled with a 6 day steroid burst, so right b-4 IVIG she was pretty good.

 

Our dd was originally diagnosed with PANDAS in March 08, behavior changes started 2 mo.previously (Jan 08) after a 3-4 day FEVER (age 7.5 years); we found out later that several members of her class had strep at the time. By March 08 she had 2 months of worsening behavior: tantrums, emotional lability, anorexia nervosa (severe enough to require 6 days of hosp. for malnutrition/acute food refusal--she dropped from 50 pounds to 42 pounds in 2 weeks) which started with refusal to eat breakfast and cascaded from there, distorted body image, ocd, demanding/defiant behavior, ocular migraines where she saw "ghosts", "measurement" compulsions, fear of sugar, fear of weighing more than 50 pounds (at 50 pounds she was 25th percentile for body weight, at 42 she had fallen off the charts), social anxiety, she stopped playing with kids at school, depression, called herself a "bad person", suidicidal statements, fine motor/handwriting issues, and some mild vocal tics. (Her teacher thought the dramatic change in her personality/behavior was b/c she had been molested!) In the hospital dd cultured positive (throat and perineal) for GABHS. Her titers (aso, anti-danse b ) were normal/low. I had the rest of the family throat cultured at the time and her younger sister was also positive (assymptomatic carrier). Dd had initial mood improvement with Augmentin (10 days) but still had lots of OCD/issues...she regressed again when we switched her to Amoxicillin (250mg 2x daily) for prophylaxis.

 

By June 08 we were eventually able to gain remission by 1) clearing her strep carrier younger sister with Azith. (augmentin had failed) 2) putting PANDS dd on Azith. 250mg/day (also Advil). Just b-4 we started the Azith, the eating disorder clinic had recommended re-hosp. There were a few days were she only ate 2 pieces of bread and some water in a 24 hour period . After 5 days of Azith, we noticed her mood was a bit better and she was yelling at us less. It took about 10-14 days of full-strength Azith, to get rid of the majority of the OCD/eating issues. It took 6 weeks of Azith. to get rid of tics/movement compulsions. After 2 mo. of the Azith. she was pretty much back to normal. She stayed on 250mg/day Azith. (also 10mg/day prozac....that's part of the "longer version" of the story http://www.pandasnetwork.org/case2.html).

 

Starting in 0ct 08 we noticed a return of symptoms (not full-blown, nothing compared to Spring 08) when her assymptomatic sister tested positive for strep (Nov08 and Dec 08), when I had strep (April 09), and when pandas dd got fifth's (Feb 09) and H1N1 (June 08). Also, over the course of the year we were experiencing a "baseline change" despite staying on 250mg/day Azith. If we decreased to 125mg/day we also noticed a difference. This is what led us to IVIG...we could see that her symptoms were returning despite full-strength Azith and that her baseline was creeping up. Dr. Cunningham's numbers really confirmed what we had been seeing.

 

At, this point our dd is probably as good as she has ever been. School is going well, much better than last year. Usually when I ask her how it went she says "good". She is still not crazy about math/spelling but seems to like school in general. Her anxiety is way down and told her psychiatrist that she no longer "wants to be invisible". She loves to read and is reading now more than ever. (She also read more when her steroid burst kicked in.)

 

We suspect she had undiagnosed PANDS episodes when she was younger (ages 4-6) which included episodes of urinary frequency, handwashing, anxiety, sensory issues (had to cut tags out of all her shirts etc.). Neither she nor her sister had never had a strep throat culture prior to March 08 (when we requested it, the docs were only going to do the ASO/anti-dnase b ). It appears that her neither child gets the classic red sore throat when they get strep so nobody had ever bothered to culture either one (even when they've come in for high fever, vomiting, other symptoms of strep.)

[EAMom]

oh..our post IVIG blood draw was actually 7 weeks post (not that it makes much of a difference).