3 months post IVIg

[amy s]

Hi all,

I just wanted to give an update regarding my pandas dd. Quick history first: As most of you know she developed sudden and dramatic/debilitating OCD out of the blue August 2007 while we were living in Italy. She had a complete personality change (went from very smart, happy go lucky very funny kid to making suicidal statements, lining up her toys and bizarre behaviors) She had severe rages which at times lasted 3-4-5 hours long and needed maximum community assistance. She had hand tremors previous to this and when pandas OCD hit the tremors increased to her arms, head and upper body. She was extremely ill, had all the classic urinary symptoms, huge pupils, separation anxiety. PANDAS being as it is...nobody knew what was wrong with her, labeling her as possibly autistic (BAM! at age 6) , possibly schizophrenic and/or any other number of issues. This went on for a while with a few times over the days and months when things calmed down for whatever reason only to return more strange and bizzare. Long story short we made our way back to the USA.... and with a lot of work and email/telephone help from Dr. K (to me) and on to our new pediatrician she received IVIg 12 weeks ago. (Dr. K website is www.webpediatrics.com )

 

On to the update: She has had a unbelievable change and is now still nearly 95% better. We really don't even see the sub clinical OCD that we used to about a month or two ago. NO rages at all, NO skin picking (she did this pretty bad for a while) She has been back in school for the last 5 weeks with not one issue that required my assistance! We have not seen any major relapses. There has been 1-3 times that we wondered if she would get 'sick' again....once recently she wasn't feeling well...was acting just a bit off (but NOTHING like the above description of her previous pandas episodes), but she was definately 'off', including her coloring in her coloring pages. Anyway, she had very red ears, red cheeks...I took her temp and it was 100.4. I had her rest in her room (while I paced the floors) and as her temp slowly came down (nothing given to aid with that-- it just came down naturally), her behavior normalized; it was really phenomenal and I don't know what to attribute this to- maybe the antibodies beginning to act appropriately?

 

Today we had a meeting at school. Prior to the holidays she had to go to homebound school status and a teacher came out one hour 3 times per week to administer the testing, etc. And she had an IEP, for behavioral reasons only. She was labelled as "Emotionally Disturbed" for purposes of the initial IEP. Now, this really upset me, because to me this was a medical problem, not an emotional one, but it was the only thing they would give us so she could get services (prior to being homebound she had a full time para and multiple suspensions). Today's meeting was very positive and everyone on the 'team' felt she no longer needed or was even eligible for an IEP so services have been stopped! I agree...she really is just like a normal kid again. Totally amazing to me. Now, if a time comes in the future that a new IEP needs to be implemented, she will be qualified under "Other Health Impaired" as it should have been to begin with. Now we have all these people who have seen the transformation and nobody can deny the amazing difference.

 

I wanted to post this to offer hope to some people out there, probably some parents that haven't even registered on here yet (I lurked for months, too exhausted to put our story into words). I do realize that we could have an exacerbation of symptoms again and I feel for those on here who have... I have hope that my dd's immune system is beginning to respond appropriately. Before, there were times that I would wonder...."my dd's symptoms are not exactly like the others on here...what if my dd doesn't really have pandas, it is something else?" I bet others have wondered the same at times. But just remember that not every child's symptoms will be the same, although many have striking similarities, but every episode can be different even for the same child. Please, to you new parents out there dealing with these new, bizzare symptoms....stick with your gut feelings, educate yourself and push...if you can't get help from your current doctor go to one who can help you. But also remember to take care of yourself too.

 

Now what's left over as far as symptoms for my dd? Perhaps some low level anxiety, not much. Still has the hand tremors which she had prior to the pandas start (I read somewhere that certain signs such as milkmaid grip and tremors can/not always be a 'soft sign' in pandas patients prior to explosion of symptoms). She occasionally tells on herself, but really I don't know if that is a 'symptom' or a habit. Also she no longer has ANY urinary issues! She does still have loss of math skills--I guess you can't just expect those to just pop back into her head, especially since she missed so much school too. She also seems to have a low level issue with staying focused which she didn't have before. BUT, my dd doesn't seem to have what others here mention as far as the spaciness and stuff like that...if she does it is extremely minimal. She took Risperdol and Zoloft for a long time and no longer takes either of those, thankfully! We stopped those on advice from Dr. K prior to doing the steroid burst trial to see if IVIg would be effective for her.

 

No need for response, I just thought it was a good time to post an update. Wanted a positive story on the front page for those parents who need it.

[Worried_Dad]

Amy, thanks so much for sharing this. These are the stories that give the rest of us hope!!!

 

Our son had IVIG with Dr. K just over 4 months ago. Our son is older (12 going on 13) and had very severe symptoms prior to IVIG, so Dr. K did warn us that the treatment might not be as effective or recovery as rapid for him. We also saw rapid improvement for first 3 weeks, slower improvement for next month, then progress stagnated at about 60-65%. First week of January, our son got a sinus infection, and things went backward. He's regained some of the ground he lost, but not all.

 

Anyway, Dr. K has strongly recommended a 2nd round of IVIG, and we've scheduled it for next week (Feb 19 & 20). We're hoping this will finish the job, and Dr. K seems very optimistic. We'll share our progress in the coming weeks.

 

Dr. K says that he learns from each patient, and the older ones in particular present new challenges. Amy, we are praying that we'll be able to share a wonderful success story like yours soon!!!

[T_Mom]

Amy--What a wonderful post to read. Thank you for sharing that news.

Please keep us updated, it is very helpful--

 

I guess we wonder now about IVIG.

 

Since our dd is now about 85% clear (of OCD) but it is lingering this time-- and she had two earlier incidents which were very severe, at what point does one decide enough is enough.

Because our dd had such severe episodes, to be at 85% seems better than that certainly--she is walking and talking.

--but she is not herself still, still struggling with some OCD, and internally struggling against the compulsions (stepping, rewriting,

leaving test problems blank when she knows them, not saying something when she wants to, or not feeling like she is free to eat something.)

 

Best,

 

T.Mom

[michele]

Thank you for the update. It is so important that we find out what can work for our PANDAS kids. Please keep us informed to how she responds over time. Did Dr. K email your ped or talk to her over the phone? I just wondered how that process went. I did talk to Dr. K and he emailed me but I am not sure how to get my ped on board next? Did your ped contact Dr. K ? We are so happy to hear you daughter is doing so well. Yeh!

 

Michele

Hi all,

I just wanted to give an update regarding my pandas dd. Quick history first: As most of you know she developed sudden and dramatic/debilitating OCD out of the blue August 2007 while we were living in Italy. She had a complete personality change (went from very smart, happy go lucky very funny kid to making suicidal statements, lining up her toys and bizarre behaviors) She had severe rages which at times lasted 3-4-5 hours long and needed maximum community assistance. She had hand tremors previous to this and when pandas OCD hit the tremors increased to her arms, head and upper body. She was extremely ill, had all the classic urinary symptoms, huge pupils, separation anxiety. PANDAS being as it is...nobody knew what was wrong with her, labeling her as possibly autistic (BAM! at age 6) , possibly schizophrenic and/or any other number of issues. This went on for a while with a few times over the days and months when things calmed down for whatever reason only to return more strange and bizzare. Long story short we made our way back to the USA.... and with a lot of work and email/telephone help from Dr. K (to me) and on to our new pediatrician she received IVIg 12 weeks ago. (Dr. K website is www.webpediatrics.com )

 

On to the update: She has had a unbelievable change and is now still nearly 95% better. We really don't even see the sub clinical OCD that we used to about a month or two ago. NO rages at all, NO skin picking (she did this pretty bad for a while) She has been back in school for the last 5 weeks with not one issue that required my assistance! We have not seen any major relapses. There has been 1-3 times that we wondered if she would get 'sick' again....once recently she wasn't feeling well...was acting just a bit off (but NOTHING like the above description of her previous pandas episodes), but she was definately 'off', including her coloring in her coloring pages. Anyway, she had very red ears, red cheeks...I took her temp and it was 100.4. I had her rest in her room (while I paced the floors) and as her temp slowly came down (nothing given to aid with that-- it just came down naturally), her behavior normalized; it was really phenomenal and I don't know what to attribute this to- maybe the antibodies beginning to act appropriately?

 

Today we had a meeting at school. Prior to the holidays she had to go to homebound school status and a teacher came out one hour 3 times per week to administer the testing, etc. And she had an IEP, for behavioral reasons only. She was labelled as "Emotionally Disturbed" for purposes of the initial IEP. Now, this really upset me, because to me this was a medical problem, not an emotional one, but it was the only thing they would give us so she could get services (prior to being homebound she had a full time para and multiple suspensions). Today's meeting was very positive and everyone on the 'team' felt she no longer needed or was even eligible for an IEP so services have been stopped! I agree...she really is just like a normal kid again. Totally amazing to me. Now, if a time comes in the future that a new IEP needs to be implemented, she will be qualified under "Other Health Impaired" as it should have been to begin with. Now we have all these people who have seen the transformation and nobody can deny the amazing difference.

 

I wanted to post this to offer hope to some people out there, probably some parents that haven't even registered on here yet (I lurked for months, too exhausted to put our story into words). I do realize that we could have an exacerbation of symptoms again and I feel for those on here who have... I have hope that my dd's immune system is beginning to respond appropriately. Before, there were times that I would wonder...."my dd's symptoms are not exactly like the others on here...what if my dd doesn't really have pandas, it is something else?" I bet others have wondered the same at times. But just remember that not every child's symptoms will be the same, although many have striking similarities, but every episode can be different even for the same child. Please, to you new parents out there dealing with these new, bizzare symptoms....stick with your gut feelings, educate yourself and push...if you can't get help from your current doctor go to one who can help you. But also remember to take care of yourself too.

 

Now what's left over as far as symptoms for my dd? Perhaps some low level anxiety, not much. Still has the hand tremors which she had prior to the pandas start (I read somewhere that certain signs such as milkmaid grip and tremors can/not always be a 'soft sign' in pandas patients prior to explosion of symptoms). She occasionally tells on herself, but really I don't know if that is a 'symptom' or a habit. Also she no longer has ANY urinary issues! She does still have loss of math skills--I guess you can't just expect those to just pop back into her head, especially since she missed so much school too. She also seems to have a low level issue with staying focused which she didn't have before. BUT, my dd doesn't seem to have what others here mention as far as the spaciness and stuff like that...if she does it is extremely minimal. She took Risperdol and Zoloft for a long time and no longer takes either of those, thankfully! We stopped those on advice from Dr. K prior to doing the steroid burst trial to see if IVIg would be effective for her.

 

No need for response, I just thought it was a good time to post an update. Wanted a positive story on the front page for those parents who need it.

[joyfulshout]

Thank you, Amy, for your update.

I am one of those new parents you were talking about wondering if my son really has PANDAS. Well, after reading some of these posts and going on Dr. K's website, I really felt we were on to something here - so many things sounded just like my son. My ds is 13 now and has been having OCD symptoms since he was 6. So we are not new to the OCD, just to the PANDAS. I had heard about it before, but disregarded it because I don't remember my son having strep throat. So, I didn't give it much thought. But, the wonderful parents who have posted here strongly recommended that I try looking into it further.

 

I have written Dr. K and he responded this morning saying that it is VERY likely that my ds has PANDAS and recommended having his AntiDNAse B titer done. I didn't have much luck today in getting through to talk to a nurse about it at our pedatrician's office, but will try again Monday. I'm hoping they will do that for him.

 

I still have so many questions though. Like, if he does test positive and it confirms his diagnosis, how do we get the doctors to prescribe an IVIG as Dr. K. recommended in his email? And even if it comes out negative, Dr. K. and other parents who've posted said PANDAS was still a very likely diagnosis. Wouldn't that be even harder to convince drs to treat it if it came back negative?

 

I guess those are things we will have to deal with when we get to that point. I just need to focus on getting my ds tested first.

 

Thanks for the encouraging update!

[EAMom]

Hi Joyfulshout,

 

definitely do throat cultures (including other family members), not just titers.

 

our PANDAS dd definitely shows mild symptoms (tics, movements, weird mood, find motor issues; nothing "full-blown" thanks to the Azith.) when her sister (strep carrier) is culture positive. This is despite the fact that PANDAS dd is on 250mg azith/day. When we treat sister, her symptoms (so far) have improved.

 

Our PANDAS dd never had high titers, so we don't even bother with them anymore, we just culture her sister!

 

In one of the studies by Ed Kaplan (WHO strep expert), there were some kids (strep carriers) that were positive the full 2 years of the study! So, it's very possible your son (or siblings) are still culture positive (even without sore throat/etc.).