Jump to content
ACN Latitudes Forums

Recommended Posts

I'm new to forums and so I'm not real clear on using this system, but I was trying to reply to a post from March of this year by Pandas_chicago. I tried to enter the name in search, but nothing came up. Leslee is the name of the person who had posted im March about her son who was diagnosed with PANDAS in 2005, he had a steroid burst, then 4 months later IVIG - apparently has been symptom free since then. She mentioned her son was being followed as a case study by someone at Yale and she also said that even though her doctor thought he was cured, she thought that PANDAs is for life. I would like to communicate with her to find out more about the last few years. We are hoping to do IVIG with the same doctor for our 8 year old daughter. - am interested to hear about long term successes and what this study at Yale is yielding.

 

There was also a posting by Caryn in May 2006 where she wrote that this same doctor had been discussed in another forum and that his ideas about IVIG for PANDAs should be scrapped. I'd like to know more about what exactly was written that would bring her to that conclusion. She cited something like http://p069.ezboard.com/Miroslav-Kovacevic...opicID=33.topic but when I type this in it brings me to a search screen and I don't know how to proceed. I am always interested in hearing both sides to any argument - with pros and cons you can make a more informed decision.

 

Until I stumbled onto this website, I didn't realize that there were that many other people out there dealing with these issues. My pediatric group and a neurologist we've seen make me feel like I'm a raving lunatic and I keep hearing that it's still controversial whether PANDAs really exists. I will share a little about our situation:

My daughter was normal (except for a speech delay shared with her twin sister) until last November (she was 7) when she had a week long fever and strep like symptoms. We did get a strep test which was negative (I was told that the strep could have been on her tonsils & they swabbed the back of the throat, that the speciman was not collected correctly or that possibly the test was done prematurely) In any case, thereafter she stopped sleeping through the night, developed odd hand movements, started squinting or blinking, imagined odd tastes or smells, couldn't write or draw, was emotionally inappropriate. This peaked in December and January (I even had her admitted to inpatient child psych because I was desperate)They didn't know what to make of it - gave her ativan, trazadone, prozac. Nothing worked - it just made things worse. She was seen outpatient by a psychiatrist & psychologist. I took her off the meds within a few weeks and she very gradually got better (over months). By end of April she was back to concentrating in school - writing & reading amost back to normal - although she had lost most of the school year. She was drawing beautifully again - no more odd tics or movements, slept well, etc. May, June and July were great - completely normal. However, she did have a strep infection in June and received antibiotics. The beginning of August she started the odd behaviors again and until now they seem to be getting more frequent - eyes blinking & squinting - hands drawn up into claw like position - stares at her hands, can't get dressed, can't write, cant draw, can't read, doesn't hear what your saying (have to repeat directions 3 or 4 times) I had her ASO titer drawn and it was 330 (normal ref range 0-249). Her Antidnase B is 50 which is normal (I don't really understand how that can happen. But today we started the steroid burst (which is prednisone given over 5 days). I'll let everyone know how that goes. If it turns her behavior around, I'm sure we will go for the IVIG. We have to do something because she's completely non-functional right now - no point in even going to school.

Link to post
Share on other sites

Some questions out of curiosity, how many mg of prednisone do you give each day? How do you administer it once or twice per day? Which Dr. prescribed this steroid burst treatment? I agree with feeling like a lunatic, someone here posted to me it is as if people look at you like you are making this up? Munchenhausen ssyndrome is how the school is making me feel saying he's been to so many Dr.'s and had more diagnosis then other kids his age. Did your child originally remain on the antibiotic after the first strep/behavior episode. I know now that the symptoms are not as bad when they are exposed and on the antibiotics. They still get a small change in behaviors but it doesn't last as long or get as dramatic. Because of this I want him to stay on the antibiotics long term. Possibly the damage wouldn't be as permanent if we had started prophylaxis antibiotics sooner. I hope and pray we don't need the IVIG. Have you contacted the Dr. who would do the IVIG? Who would it be? Please keep us informed what you discover. I think it is wonderful to find other parents here who are going through similar situations. It is a scary thing when your child is having a mental change and nobody knows why or what to do to help them. It sounds as if your daughter had a very severe episode this time. Good luck with your research and I hope she recovers soon.

 

Michele

I'm new to forums and so I'm not real clear on using this system, but I was trying to reply to a post from March of this year by Pandas_chicago. I tried to enter the name in search, but nothing came up. Leslee is the name of the person who had posted im March about her son who was diagnosed with PANDAS in 2005, he had a steroid burst, then 4 months later IVIG - apparently has been symptom free since then. She mentioned her son was being followed as a case study by someone at Yale and she also said that even though her doctor thought he was cured, she thought that PANDAs is for life. I would like to communicate with her to find out more about the last few years. We are hoping to do IVIG with the same doctor for our 8 year old daughter. - am interested to hear about long term successes and what this study at Yale is yielding.

 

There was also a posting by Caryn in May 2006 where she wrote that this same doctor had been discussed in another forum and that his ideas about IVIG for PANDAs should be scrapped. I'd like to know more about what exactly was written that would bring her to that conclusion. She cited something like http://p069.ezboard.com/Miroslav-Kovacevic...opicID=33.topic but when I type this in it brings me to a search screen and I don't know how to proceed. I am always interested in hearing both sides to any argument - with pros and cons you can make a more informed decision.

 

Until I stumbled onto this website, I didn't realize that there were that many other people out there dealing with these issues. My pediatric group and a neurologist we've seen make me feel like I'm a raving lunatic and I keep hearing that it's still controversial whether PANDAs really exists. I will share a little about our situation:

My daughter was normal (except for a speech delay shared with her twin sister) until last November (she was 7) when she had a week long fever and strep like symptoms. We did get a strep test which was negative (I was told that the strep could have been on her tonsils & they swabbed the back of the throat, that the speciman was not collected correctly or that possibly the test was done prematurely) In any case, thereafter she stopped sleeping through the night, developed odd hand movements, started squinting or blinking, imagined odd tastes or smells, couldn't write or draw, was emotionally inappropriate. This peaked in December and January (I even had her admitted to inpatient child psych because I was desperate)They didn't know what to make of it - gave her ativan, trazadone, prozac. Nothing worked - it just made things worse. She was seen outpatient by a psychiatrist & psychologist. I took her off the meds within a few weeks and she very gradually got better (over months). By end of April she was back to concentrating in school - writing & reading amost back to normal - although she had lost most of the school year. She was drawing beautifully again - no more odd tics or movements, slept well, etc. May, June and July were great - completely normal. However, she did have a strep infection in June and received antibiotics. The beginning of August she started the odd behaviors again and until now they seem to be getting more frequent - eyes blinking & squinting - hands drawn up into claw like position - stares at her hands, can't get dressed, can't write, cant draw, can't read, doesn't hear what your saying (have to repeat directions 3 or 4 times) I had her ASO titer drawn and it was 330 (normal ref range 0-249). Her Antidnase B is 50 which is normal (I don't really understand how that can happen. But today we started the steroid burst (which is prednisone given over 5 days). I'll let everyone know how that goes. If it turns her behavior around, I'm sure we will go for the IVIG. We have to do something because she's completely non-functional right now - no point in even going to school.

Link to post
Share on other sites

Your daughter certainly sounds like PANDAS! (You most certainly are not a lunatic!)

 

Don't too fret much about the titer numbers...my daughter's were (on 3/21/08 which is 2mo. after FEVER and behavior change) 31 ASO and 149 anti-dnase . A month later her titers even lower 28.1 ASO and <60 anti-dnase and she was still completely "wigged out" by PANDAS.

 

"Buster" has a post called "All about titers" (or something like that) which explains more about the strep titers.

 

I agree that cultures aren't 100%. For example, there are several strains of strep which are anaerobic (live w/out oxygen) and difficult to grow on culture.

 

Additionally, in the future, I would insist on a 48 hour culture if the rapid is negative (don't know what was done on your dd).

 

My daughter was also in the hospital for a week (malnutrition/anorexia nervosa) thanks to PANDAS. Clearly, this is not a benign disease.

 

Here is more info which I (being lazy) cut and pasted from one of my other posts:

 

I just want to warn you that strep titers can be neg/normal and it can still be PANDAS. Our dd got strep (FEVER) January. Our dd's titer's were all normal/low (in March and April) even when she was competely full blown PANDAS (anorexia nervosa, OCD, contamination fears, tics, psychotic behavior) and her throat culture was postive in March (rare growth after 48-72 hours, plus her 5 year old sister was positive on the rapid).

 

We tried 3 other antibiotics (March until June) before she went into remission on Azithromycin. She is still on Az. (since June). The ped. rheumatologist and ped. neurologist both agree it is reasonable to keep her on 1 year...then maybe we'll think about switching to pen. prophylaxis which is not so broad spectrum. Even, with the Azithromycin, her turnaround wasn't overnight. After 3-5 doses she was yelling at us less. After 8-10 doses she "decided she wanted to get better" and started eating 3 meals a day. After 1 mo. she was 97% normal but there was still and "edginess" to her (and tics still present, but OCD and anorexia nervosa gone). After 2 mo. on Azithromycin she was pretty much 100% (no more tics, "edginess" gone). I think it just takes a while for the inflamed basal ganglia to "recover" once antibiotics are started. Also, I wonder if it takes a while for the strep toxins to leave their system?

 

We think dd is a strep carrier (strep was living in her throat for 2mo...normally her immune system should have cleared it). This may be why she responded to the Azithromycin and not the other antibiotics. Also, the Azithromycin has some anti-inflammatory/immonodoulating effects that the others don't have.

 

Re low titers...some kids don't make a lot of titer even if they do have strep (postive culture and pharyngitis). Other kids have titers that rise and fall very rapidly so by the time the blood is drawn (after a couple of months) the values are "normal". Some kids have a very low baseline so even when their titers rise the values are still "normal".

 

For a PANDAS diagnosis, it really doesn't matter if your child's titers are "normal" if throat culture is postive...that is all the evidence of strep that you need. Where titers are useful is when you child is no longer culturing positive and you are looking for "evidence" of a prior strep infection. Also, some people notice their child becomes symptomatic when titers rise above a certain number. In Swedo's studies, titers rose *after* OCD/tic increases...which makes me believe it's not the titers themselves that was the direct cause of the PANDAS, but more of a marker of strep. Perhaps PANDAS is more directly from the strep (toxins) vs. the antibodies themselves.

Link to post
Share on other sites

Hello & welcome to my world...

I am Pudgeo9999 or Sarah and my son had a fever in Jan 07 and has never been the same since...I don't have much time to write but I will reply more later...

Leslee@bandbservices.com is Leslee from the forum and if you want to email her she is very nice..

My email is PUDGEO@aol.com

 

I'll write later...Sarah

Link to post
Share on other sites

Dear PMoreno,

Just wondering where you live?? I live outside SF, Ca.

Anyway..my story is quite the same but my son has slowly gotten worse since this all started.

He had a 3 day fever(he was 9) and when the fever left he was a zombie! Kaiser(my HMO) thought it was seizures and he actually improved somewhat on some of those meds(depakote, lamicital) but then last summer he got really bad again and we took him off everything and that's when I found out it was PANDAS. I had to go to a private DR. (DAN! DR) because they understand immune dysfunction and over-active immune system issues MUCH better than traditional Dr's. My private Dr was very instrumental in getting Kaiser to do 3 IVIG for me and I hope to get one more at the end of this month!!

 

I was hoping for a miracle with the IVIG but it hasn't happened. So I am now resigning myself that I will have to put my son on meds...His concentration is terrible and he can't remember anything from school. He has not made any progress in a year..He still does not have his happy & vibrant personality..he is full of anxiety & OCD. He has had vocal tics at times but they wax & wane. The only med that has helped us is ativan...

 

I just had 3-D brain scan done at AMEN clinic in Fairfield CA and am meeting them on Tues to find out results & med recommendations...

 

If there's any thing I can help you with let me know.There are lots of folks going through all this..I have posted that it is definitely different for every kid ..what they need to get well from this!

If you do see private Dr get a PANDAS panel run..through Neurosciences..a DAN! Dr could do it. Also alot of traditioanl Dr base everything on ASO titers & anti-dnase(or what ever it is) because they don't look at the symptoms..just the numbers on the paper...no one ever tested my son for strep in the beginning of this and then when they did it was 6 months later!!So he numbers were just slightly elevated and my Kaiser Dr said...he doesn't have PANDAS....and then I did the private PANDAS test and guess what!!! he did!!!!high antibodies!!! HELLO!!

 

Sarah

Link to post
Share on other sites

Thanks to all who have replied and shared valuable information. To Michelle who had some questions about the steroid burst: We are giving prednisone (it's calculated by body weight and this particular doctor recommends 1 mg. per kg. of body weight) since my daughter weighs about 60 lbs, it's roughly about 30 mg. per day for 5 days. I'm told that if this is effective, we should see a significant change in her behavior sometime between 3 and 10 days after starting the meds. Unfortunately, it does not last long (maybe a couple of weeks I've heard - am I right?) but it's more of a diagnostic tool, not really a solution to the problem. The point is that if the child reacts favorably to the steroids, then it must mean that the inflammation in the basal ganglia is going down and henceforth the improved behavior - which would then mean that PANDA's diagnosis would be confirmed and the next step is IVIG.

I'm sorry to hear that things didn't work out for your little 9 year boy (in California) after the IVIG. I had hoped that this would work for everyone across the board who truly had PANDA's. Since IVIG is an immune modulator, it should theoretically restore the immune system and prevent these overactive antibodies from attacking the host brain cells. Can you tell me a little more about what happened with that - was there any improvement at all? I've heard things ranging from improvement in a few hours to after a few weeks. What makes this so hard to accept is that one minute you have a normal functioning child, and then after an illness, it's almost as if you have a stranger with you. At least with most autistic children who have been diagnosed early on, you have a chance to get used to the diagnosis gradually. Of course, I'm not saying this is easy either. I have found out most of what I know over a period of many months by checking info on the internet. We also visited Dr. Jeff Bradstreet's clinic in Melbourne this summer. At that time my daughter had fairly normal behavior, but it was thought that her previous odd behaviors were PANDA related. Now that she is back to these behaviors, I did speak with them about IVIG - they do it there, but its too difficult for us to make many trips back & forth to FL, since we live in Michigan. I did find some info about Dr. K in Chicago (only 4 hrs. away for us), so I have communicated with him and hope to do the IVIG there possibly after we finish the prednisone. I don't think there has been a lot of research about this treatment (first because it hasn't been used that long and also because there probably haven't been that many cases diagnosed (even though they're out there) and besides that I'm sure cost is a big factor for most people. I understand it's roughly $8,000 for 2 days of IVIG and most insurances won't cover since its still considered experimental. Any cost is worth the life and health of your child, but what would be especially sad would be to spend that amount of money and then not have any positive results. I imagine its kind of a gamble. I just don't understand why all these kids (who have very similar stories) react so differently - some seem to have complete recoveries - others get worse, from what I've read here. I don't know about putting my child on long-term antibiotics. I'm concerned about the resistance to antibiotics and other side potential side effects. Besides, in studies that I've read about, even some kids on antibiotics got strep infections. As I had said earlier, my daughter had a strep infection in June for which she was treated with abx, but she has her OCD symptoms back now. She also had a minor upper resp. infect. late July so I'm not sure if she is now reacting to the earlier diagnosed episode of strep or to the milder infect. she just had. They say it does not always have to be strep, that they can react to other infections too or viruses. I remember that with the first infection (which did not yield a positive strep culture) she had a mouth full of cold sores and on her lips too. I must say that this episode is not as severe as the last one (but it has only been a month, so I don't know if she will get worse for a while or if this is as bad as its going to get) The first time she was extremely paranoid about her twin contaminating her food and touching her clothes. She would get angry about nothing and have major temper tantrums & outbursts and yelling (not her normal personality at all - she's very mild mannered) At least that has not happened this time, but maybe its premature for me to say anything yet. We'll see. Anyway, we'll know more in a week or so after the prednisone takes effect. Again, I'd like to hear more from others who have used IVIG and hear pro's & cons. The doctor in Chicago seems to have a good track record of a lot of successes. I have not talked with him yet about the failures. I will do that in the future to be able to see both sides of the coin. Sorry for being so verbose. Pat

Link to post
Share on other sites

Dear Pmoreno - I can contact Leslee in Chicago if you would like. My son is getting the IVIG with Dr. Kovacevic at the end of the month.

I have talked to rheumatologist, neurologists and a hemotologist. The IVIG should work theoretically. Of course, it may not.

These info boards are very helpful but one persons success and one person's failure cannot be compared unless really you know about each individuals medical history, the course of illness, etc. I'm sure you know that...just thought I'd mention it....to remind myself too.

 

I would be glad to get your email directly and help you out or connect you with Leslee. I'm at pohlmandiana@yahoo.com take care, diana

Link to post
Share on other sites
Dear Diana - thanks for replying. I think someone did give me the e-mail for Leslee and I plan to write her later today when I have time. Right now I'm running to get to an activity with my older kids. As you say, every case is individual and I'd love to hear your story to compare with what's going on with my daughter. Did you do the steroid burst? If so, did you notice results and when? My daughter started hers yesterday so I've just given her the second dose a few minutes ago - too early to see anything, I know. As you say, also the IVIG should work theoretically - it just makes sense. Don't know why it wouldn't - unless its not PANDAs. Talk to you later. Pat

Dear Pmoreno - I can contact Leslee in Chicago if you would like. My son is getting the IVIG with Dr. Kovacevic at the end of the month.

I have talked to rheumatologist, neurologists and a hemotologist. The IVIG should work theoretically. Of course, it may not.

These info boards are very helpful but one persons success and one person's failure cannot be compared unless really you know about each individuals medical history, the course of illness, etc. I'm sure you know that...just thought I'd mention it....to remind myself too.

 

I would be glad to get your email directly and help you out or connect you with Leslee. I'm at pohlmandiana@yahoo.com take care, diana

Link to post
Share on other sites
Dear Sarah:

I was just wondering - you said you tried IVIG before and it didn't work - do you know what brand they used. I've been told that some work better than others and its good to get irradiated. The doc I originally was working with in Florida only uses a specific kind (can't remember off the top of my head now, but think its something like gammox? I can check on that - but I believe the doc in Chicago who we're hoping to see soon uses that same brand). Also, did your son have the 5 day prednisone first? If so, what happened with that? Pat

 

 

Dear PMoreno,

Just wondering where you live?? I live outside SF, Ca.

Anyway..my story is quite the same but my son has slowly gotten worse since this all started.

He had a 3 day fever(he was 9) and when the fever left he was a zombie! Kaiser(my HMO) thought it was seizures and he actually improved somewhat on some of those meds(depakote, lamicital) but then last summer he got really bad again and we took him off everything and that's when I found out it was PANDAS. I had to go to a private DR. (DAN! DR) because they understand immune dysfunction and over-active immune system issues MUCH better than traditional Dr's. My private Dr was very instrumental in getting Kaiser to do 3 IVIG for me and I hope to get one more at the end of this month!!

 

I was hoping for a miracle with the IVIG but it hasn't happened. So I am now resigning myself that I will have to put my son on meds...His concentration is terrible and he can't remember anything from school. He has not made any progress in a year..He still does not have his happy & vibrant personality..he is full of anxiety & OCD. He has had vocal tics at times but they wax & wane. The only med that has helped us is ativan...

 

I just had 3-D brain scan done at AMEN clinic in Fairfield CA and am meeting them on Tues to find out results & med recommendations...

 

If there's any thing I can help you with let me know.There are lots of folks going through all this..I have posted that it is definitely different for every kid ..what they need to get well from this!

If you do see private Dr get a PANDAS panel run..through Neurosciences..a DAN! Dr could do it. Also alot of traditioanl Dr base everything on ASO titers & anti-dnase(or what ever it is) because they don't look at the symptoms..just the numbers on the paper...no one ever tested my son for strep in the beginning of this and then when they did it was 6 months later!!So he numbers were just slightly elevated and my Kaiser Dr said...he doesn't have PANDAS....and then I did the private PANDAS test and guess what!!! he did!!!!high antibodies!!! HELLO!!

 

Sarah

Link to post
Share on other sites
What makes this so hard to accept is that one minute you have a normal functioning child, and then after an illness, it's almost as if you have a stranger with you. At least with most autistic children who have been diagnosed early on, you have a chance to get used to the diagnosis gradually.

 

Wow, that was harsh. I guess 4 years later I still haven't gotten used to the autism diagnosis. 4 years isn't gradual enough. In my son's case I had a normal functioning child, then he got his MMR and within a week he was gone.

 

4 years later, my son who was getting much better and close to functioning like a typical child (is anyone really "normal?" My son is "normal" he just happens to not have developed typically) got slapped in the face with PANDAS too. So I lost my child twice.

 

Please choose your words carefully. There just may be other parents of children with autism, who also have PANDAS, and my not have had that chance to get used to things gradually. It wasn't any easier for us. The way I look at it, you had a typical child and know what it's like, and know what your child could say, think and feel. I never had that, and may never, and I don't think I'll ever "get used to" that

 

 

We've done 5 IVIG's and will have # 6 in 12 days. Gradual improvements. It's not a magic bullet. I've only heard of one kid that was miraculously cured by IVIG and it took 17 infusions.

Link to post
Share on other sites

I am sorry for what you have been going through. Sometimes we get so caught up in our own little pitty party that we forget about the ones who are going through much more difficult times then us. Than you for sharing. I pray your treatment brings success and healing. Blessings to you. I am sure we could all learn from your experiences here, especially with the IVIG you have had done. It sounds like you have been through a lot. We need to count our blessings, thanks for pointing this out.

 

Sincerely,

Michele

What makes this so hard to accept is that one minute you have a normal functioning child, and then after an illness, it's almost as if you have a stranger with you. At least with most autistic children who have been diagnosed early on, you have a chance to get used to the diagnosis gradually.

 

Wow, that was harsh. I guess 4 years later I still haven't gotten used to the autism diagnosis. 4 years isn't gradual enough. In my son's case I had a normal functioning child, then he got his MMR and within a week he was gone.

 

4 years later, my son who was getting much better and close to functioning like a typical child (is anyone really "normal?" My son is "normal" he just happens to not have developed typically) got slapped in the face with PANDAS too. So I lost my child twice.

 

Please choose your words carefully. There just may be other parents of children with autism, who also have PANDAS, and my not have had that chance to get used to things gradually. It wasn't any easier for us. The way I look at it, you had a typical child and know what it's like, and know what your child could say, think and feel. I never had that, and may never, and I don't think I'll ever "get used to" that

 

 

We've done 5 IVIG's and will have # 6 in 12 days. Gradual improvements. It's not a magic bullet. I've only heard of one kid that was miraculously cured by IVIG and it took 17 infusions.

Link to post
Share on other sites

You are completely right! Strangely, even during my dd's PANDAS episode (which was horrible), I did think many times "at least this is not autism, that would be a million times worse".

 

Is the IVIG mainly for the autism or PANDAS or both?

Link to post
Share on other sites
Hello,

 

I am honestly very sorry if I sounded insensitive with my choice of words. I guess I use the word "normal" loosely - meaning typical or "not out of the ordinary". I know that no one can ever really understand what someone else is experiencing unless they've been there, I can't say that I have first hand knowledge of autism, but I was making a statement that I felt that if you have been exposed to something for a long period of time, it seems that eventually you come to terms with it - or at least you are not in a frantic state all the time (which most people would be when they first have to deal with something like this). I was definitely not trying to minimize the pain that someone feels about autism - just comparing how I might have coped differently with something I could have been exposed to gradually and over a long period of time.

 

Certainly having both autism and PANDAS must be so overwhelming. It would be hard to be able to sort out the behaviors at times. I'm so sorry for you and your child and for mine and everyone else who is going through this. It just seems like there should be some effective therapy out there. It appears that they've identified the inflammation of the basal ganglia as the cause for the symptoms of PANDAS, so I don't understand why the IVIG is not making more of a difference across the board.

 

You mentioned that your child has had quite a few IVIG infusions already. Where did you go? I've heard that sometimes success depends on the brand used and the dosage. I've heard that Dr. K near Chicago has had a high success rate. He does 2 consecutive days of IVIG and a lot of his kids have been symptom free for years. We are in the midst of doing a steroid burst right now and then will consider IVIG. Did your child have the steroid burst prior to the IVIG? I found Dr. K's website to be pretty helpful - it's www.webpediatrics.com/ivigCRO.html Pat

 

 

What makes this so hard to accept is that one minute you have a normal functioning child, and then after an illness, it's almost as if you have a stranger with you. At least with most autistic children who have been diagnosed early on, you have a chance to get used to the diagnosis gradually.

 

Wow, that was harsh. I guess 4 years later I still haven't gotten used to the autism diagnosis. 4 years isn't gradual enough. In my son's case I had a normal functioning child, then he got his MMR and within a week he was gone.

 

4 years later, my son who was getting much better and close to functioning like a typical child (is anyone really "normal?" My son is "normal" he just happens to not have developed typically) got slapped in the face with PANDAS too. So I lost my child twice.

 

Please choose your words carefully. There just may be other parents of children with autism, who also have PANDAS, and my not have had that chance to get used to things gradually. It wasn't any easier for us. The way I look at it, you had a typical child and know what it's like, and know what your child could say, think and feel. I never had that, and may never, and I don't think I'll ever "get used to" that

 

 

We've done 5 IVIG's and will have # 6 in 12 days. Gradual improvements. It's not a magic bullet. I've only heard of one kid that was miraculously cured by IVIG and it took 17 infusions.

Link to post
Share on other sites

Ratlenhum and I are old IVIG friends..meeting on another forum to discuss PANDAS & IVIG. She helped me alot...she saw Dr Gupta first for IVIG and I went shortly after. Dr Gupta does IVIG about every month for PANDAS & immune dysfunction where Dr K has a different protocal.

 

I have another friend in my area who is doing the 2 day IVIG for her sons PANDAS. They just did the 2nd round. Unfortunately he gets very sick the day they come home for a day and then seems to be fine . He gets flu/fever symptoms.I've heard this is a normal reaction to 2 day IVIG. I don't think there is really a "for-sure" protocal to get rid of PANDAS.

 

I am meeting Dr at Amen CLinic today to go over my sons brain scans...his comment during the phone consult before we started was that IVIG wouldn't help...so I am going to ask him to elaborate on that...He has worked with several children who have suffered regression after viral/bacterial illness and has a son on the spectrum so I think he gets it...

Sarah

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...