update on our dd--we're planning on another IVIG

[EAMom]

Hi Everyone...

I just wanted to give an update on our (Buster's and my) dd9.

 

Here's a hx (I tried to be brief...it could have been a lot longer!):

 

2nd grade/all &*%$# breaks loose: At age 7.5 she had "sudden onset" (starting after a FEVER/strep in the class Jan 08 and worsening over 2 mo.) of PANDAS symptoms (tantrums, anxiety, suicidal statements, depression, tics, her behavior changed such that her teacher thought she had been sexually abused, full-blown anorexia nervosa/distorted body image, "measurement rituals"/checking body parts with her hands to see if she was fat) culminating in a 6 day hospitalization for malnutrition/acute food refusal/anorexia/ocd. It took Buster calling over 20 docs, mainly psychiatrists, b-4 anyone suggested we check her for strep. We googled "strep" and "anorexia nervosa" and learned about PANDAS. She had dropped from 50 pounds to 42 pounds in a matter of 2 weeks. At that point (March 08) she was culture positive for strep (throat and perianal...note, no sore throat, low titers). Her sister age 5 was also culture positive (throat, thought to be assymptomatic carrier).

 

After roughly 2 mo. (early June 08--things were bad enough where the eating disorder folks wanted to re-hosp.) we were finally able to clear sister and achieve a remission of PANDAS dd's symptoms with 250mg/day Azith plus advil (Augmentin, a cephalosporin, amoxcillin didn't work...although we did get some mood improvement with augmentin). She was also on 10mg/day prozac at that point (still is). We were also able to clear sister with Azith. (Augmentin didn't work). Mood started to improve after 5 days of Azith. Ocd/eating improved after 2 weeks. Tics took about 6 weeks to go away.

 

3rd grade/baseline changing: Starting in the fall of 08 we saw the return of symptoms (thankfully milder than what we went through in 2nd grade) with her sister getting strep (assymptomatic carrier--we tested due to strep notices) as well as viral illness (fifth's, later H1N1) for PANDAS dd despite continuing on 250mg/day Azith. We realized at that point we were seeing a change in dd's "baseline" and symptoms were becoming less and less controlled on meds alone (prozac, azith, advil), thus we opted for IVIG.

 

4th grade/current year: She had IVIG 2mg/kg (1mg/kg per day over 2 days) in August 09 (just before the start of 4th grade). After a rocky 1st week post IVIG (lots of "turning back the symptoms) dd did very well, improving week by week (still on Azith 250mg/day). We tried to discontinue the prozac in Nov. 09...but had lots of mood issues (not sure if that was return of PANDAS symptoms or if she was extrodinarily sensitive to prozac withdrawal), so we opted to continue. In Feb. 2010, dd got a 1 day FEVER (presumed viral) and cough....and PANDAS symptoms began to return...mood issues, irritability, concerns and questions about food (starting eating less, asking about what her sister is eating, etc). as well as "measurement rituals" (checking parts of her body, wrist, ribs, etc, to make sure she isn't fat). At this point (over the last couple of months), I don't think she's lost weight (now 58), but she is definitely thinner (she grew, and didn't gain). Her ped thinks she thin enough where it will delay the onset of puberty (health concerns there). Her teacher noticed that she had become more withdrawn.

 

In March 2010 we upped the Azith from 250mg/day to 500mg day (got mood improvement there) and in late March did a 5 day pred burst (50mg/day). I think the burst helped temporarily with mood/happy and eating...although it's a little tricky to say for sure since we were on vacation (spring break, visiting grandparents) for a week (last week) when the burst might have taken effect. She definitely still had the "measurement rituals". Now that we're back, it's obvious there are still eating issues plus other problems (math skill deterioration, still doesn't want to play with neighbors and hasn't for 2 mo).

 

Yesterday, dh got the "okay" from our local immunologist for another round of IVIG...so that is our next step, hopefully in the next month or so (I don't think we'll wait until summer).

Edited April 21, 2010 by EAMom

[laurenjohnsonsmom]

I'll be the first to say that I do not believe in the "one dose will do ya" theory with IVIG. As much as I do believe IVIG is showing to be very effective at getting our kids back to a functional place. This is a complicated auto-immune disease and every child is different. So much to research and learn.

 

I wish you all the best of luck with the IVIG. I have your family in my prayers every night.

 

Lynn

[EAMom]

I'll be the first to say that I do not believe in the "one dose will do ya" theory with IVIG. As much as I do believe IVIG is showing to be very effective at getting our kids back to a functional place. This is a complicated auto-immune disease and every child is different. So much to research and learn.

 

I completely agree with you. I wish I could say "one dose works for everyone", but our children have clearly demonstrated that is not the case! I think the older kids, and the ones with tics and/or eating disorders are the "tougher nuts" to crack.

[thereishope]

I hope everything works out. Your family deserves a happy ending. You are both so selfless and giving. Will keep your daughter and your family in my thoughts and prayers.

[EAMom]

I hope everything works out. Your family deserves a happy ending. You are both so selfless and giving. Will keep your daughter and your family in my thoughts and prayers.

 

Thanks Vickie! You are sweet. But we're not actually that selfless and giving...we just really hate PANDAS!

Edited April 21, 2010 by EAMom

[Megs_Mom]

I'm so sorry to hear that she has had issues this winter. It's my biggest fear, going back to that time, but it's actually quite good to hear you being matter of fact about it and moving to the next step. Thanks so much for sharing with us all. And for all that you both do for the PANDAS community. Hoping that IVIG can be scheduled soon.

[dcmom]

EAMom and Buster,

 

SO sorry your daughter is going through this again. Really glad to hear it is not as bad as initial episode, though.

 

Pandas is so rough. I have a fourth grader who is battling with pandas ocd also. She had pex and is improved, but not to where she should be. It is a rough age, where they should be the wonderful combination of still innocent and worry free, yet blossoming with new ideas and independence. Pandas can really zap all that. It is so hard to see my daughter more anxious about separating from me now than she was in preschool.

 

Hoping that we are ALL in a better place when summer arrives. I know I (and my kids) can use a break from the everyday of school, just to hang out and enjoy the simple things in life.

 

Glad you are moving quickly on treatment, the combination of giving it a little time- but yet knowing not to give it too long, seems to me to be key in fighting pandas.

 

Thank you for the update, please stay positive, and keep us informed....

[sf_mom]

As you know, we have been very happy that we've moved forward with every single IVIG treatment we have had, 3 IVIGs, 1.5 m.g./kilogram over two days, eight weeks apart..... With each treatment we have seen resolution of symptoms and further healing occur! Our son's primary presentation was TICs and Dr. K told us from the beginning they would be 'tough' and he was right.

 

I know you'll have further healing post IVIG and I look forward to your positive updates. CONGRATULATIONS, on once again securing local treatment!! It will pave the way for many more children.

 

-Wendy

[mama2alex]

I'm so sorry to hear that she's been struggling the last couple of months! Glad they've agreed to give her another IVIG. Hope you're able to get in soon. Please keep us posted.

[Fixit]

Sorry your child is in such need...but as good parents you buster do what you need to do....

thank you for not shying away from the reality and posting not only good stuff but the not good stuff..it helps all who stumble and need to pick themselves up!!!!

[norcalmom]

Thanks for sharing. It’s painful to watch our kids go thru this. Hopefully you intervened quickly enough and she is young enough that she will heal completely. You and Buster have done everything humanly possible to make that happen, and you should have no regrets in your care for her.

 

I assume you like Dr. Lewis? I thought we might travel to Chicago or Connecticut to do IVIG, should we decided to go that way. I dread all the added stress of being out of the kids (and my) comfort zone, and having to subject him to all the germs in the airport /plane/hotel so soon after having it done. Also, having to consult over the phone. Makes me feel like I'm going to see a witch doctor or some charlatan that is offering me false hope. But if someone in Northern California is getting up to speed on this, I will definitely talk to him as we get closer. I'm going to post my son's story separetely. Thanks so much for sharing yours.

Kerry

[sf_mom]

Kerry,

 

Buster and EAMom have done a wonderful job at presenting Stanford Children's with a clear cut case of PANDAs. AND, as you know Buster can map out a very well informed perspective like no other. As a result, they were able to secure treatment locally. Not all of us have been that fortunate.

 

We have spent thousands, outside of our deductable and co-pays (close to $10,000) to see if we too couldn't receive treatment locally and minimally see if we couldn't lay ground work for future children requiring treatment in the Bay Area. All three of our children are considered PANDAS, we have very concise history that leads us back to Acute Rhuematic Fever in my friends son. As a matter of fact, Dr. L at Stanford was the first to suggest my friend's son had ARF due to his lab result. I live no more than 2 miles away from Stanford Children's. Our twins have abnormal labs results, with very low IGGS...... and at the end of the day, I did not feel comfortable wasting additional time and money educating especially when 'the child' does not have a clear cut case. With our older son he did not have elevated Anti-DNase-B but they did say they would treat if our son had a relapse. He was post his first IVIG when we first met with Dr. L at Stanford. Our twins have immune deficiencies and at 2 1/2 they wanted the direction of IVIG to come from a neuropsychiatric individual, redo test that had just been preformed at PAMF and mostly like treat with lower monthly IVIG dose? Our twins did not see Dr. L. Dr. MT is very aware of the difficulties and mostly likely the reason she could not point you in any one direction.

 

I can assure you from personal experienced that Dr. K is very committed to helping our children, extremely well studied on the topic, has treated the greatest number for PANDAS children, etc. etc. Even helping with the NIMH develop guidelines for the upcoming IVIG study for PANDAS. He does not offer false hope but provides his best experienced perspective based on his actual case history. No where close to a witch Dr. or charlatan. Unfortunately, to understand you would need to meet him in person. Truly the best of the best..... and we have met a lot of Dr.'s in the past year.

 

I also have several friends who's children are being helped by Dr. B. Although, he has not been treating for as long as Dr. K he has come up to speed quickly and helping many successfully. Very kind and well respected.

 

I DO UNDERSTAND your concerns put unless you are prepared to make a very, very knowledgeable PANDAS defense on your son's behalf, I recommend for the time being consulting with or seeing one of the PANDAS experts to ultimately save you time and money. Or, at the very least, PM the parents that have pursued Stanford's Children's prior to making an appointment. There are more than a handful of us.

Edited April 25, 2010 by SF Mom

[peglem]

Even helping with the NIMH develop guidelines for the upcoming IVIG study for PANDAS

 

Wha???? Can we hear more?

[sf_mom]

Peggy, Opps.... I thought it was general knowledge. Definitely in the works, not sure if its Yale/NIMH or just NIMH.... I don't have enough FIRST hand knowledge to say more than SOMETHING is in the works.

 

 

 

Even helping with the NIMH develop guidelines for the upcoming IVIG study for PANDAS

 

Wha???? Can we hear more?