Please... help me understand this roller coaster ride..

[ForyouCG]

Hello everyone...it's been awhile since I have written, although I have been reading and getting all the knowledge and wisdom from you all..THANK YOU. I can definitely relate to alot of your stories, which at times can be heartbreaking or joyful.

 

First let me start by saying that it has been a very tough heartbreaking journey, at times very gloomy and at times there is a glimpse of hope. My son is presently 14yrs of age and was diagnosed in April 2010 with PANDAS. Besides PANDAS, he is also challenged with autism. My son was put on many abx that made symptoms worse instead of better. He did not improve on abx and symptoms actually increased. Children with autism have difficulty with antibiotics due to their gut issues, yeast, etc.

Autism is also an autoimmune disorder with it's many medical issues that also need to be treated so having PANDAS also can definitely overlap symptoms and make the immune system and child much worse.

 

I am presently seeing a DAN doctor who is treating him for the PANDAS as well as the autism autoimmune disorders. My son was diagnosed with ADHD, OCD, tics, Autoimmune disorder, metabolic disorder, PANDAS. We also tried several steroid tapers, short and long and both caused roid rage..horrible and frightening.

His present symptoms are seperation anxiety, ocd, vocal/motor tics, chorea movements, emotional lability, self injurious behavior(hits his head),excess saliva causing drooling at times, anxiety and adhd symptoms.

 

He just had his first IVIG infusion last Wednesday and thank God everything went well. Everyone was amazed how he sat for 6 hours and remained calm the majority of the time. He was well hydrated and I kept hydrating during and after IVIG. I also premedicated before and after. The very next day at 5am, he woke up with a fever, nausea, vomiting, headcahe on his crown and very lethargic. I know these side effects can occur so I was ready for them. Amazing thing was that even though he was feeling crappy..he did not tic or ocd at all while feeling this way. My son is the type of child that whenever he has a fever, his autism symptoms and PANDAS symptoms dissappear...amazing..doctor says that's proof enough that his symptoms are autoimmune related. He recovered in 24 hours with all side effects gone.

 

Now here is where I need help understanding this roller coaster ride. I have read on this forum that some children with PANDAS are treated aggressively with high dose IVIG. We did .5 grams which is a low dose but take into consideration that my son is 5'11 and weighs 220lbs, so I gather that is alot of IVIG going into him...right? Doctor did not want to start high dose in fear of bad side effects, my son is highly sensitive to many things and reacts to many medications so I can understand his reason. Doctor said depending on how he does with the 1st IVIG, he will gladly increase to 1.0 grams and eventually to 1.5. My son is getting IVIG every 28 days for six months. For children with PANDAS who are also autistic, this is a possible protocol.

 

Can anyone share some light as to why high dose IVIG is better than low dose? Is it different for children with autism who have PANDAS?

 

Has anyone seen a decrease in ocd, tics or rages once IVIG began and if so how long before the symptoms started to decrease?

 

If abx make my son worse, what can I use to prevent infections? I am presently using OLE, will this help?

 

Can anyone tell me if they are using spironolactone and if it is helping their child?

 

And last but not least Can anyone shed some light as to why my 14yr old son has excessive saliva and does not want to swallow, and will only swallow if he drinks. Can this be yeast related, GERD or clostridia?

 

Just want to say that this is a very difficult journey, many nights of helplessness and at times hopelessness. Sooo heartbreaking to see one's child suffer with symptoms that are so debilitating. Once had a high functioning child with autism and now he has regressed to the point where I feel like I'm starting over as when he was diagnosed with autism. I will never ever give up on my son as you all do not give up on your children. The battle is on.....and I am going to get my boy back!!!

 

Please help me understand some of the questions that I am asking, at times it all gets so confusing as to how to treat, what medications to use, how long to use them, what natural remedies to use, how long to wait, what not to use, what doctor to see, what to check for, what infections am I fighting..you all get my point right??

 

As always..I'm so grateful for you all..your help means alot to me and my son. Thank you all and God Bless you and your children....

[momaine]

Hello everyone...it's been awhile since I have written, although I have been reading and getting all the knowledge and wisdom from you all..THANK YOU. I can definitely relate to alot of your stories, which at times can be heartbreaking or joyful.

 

First let me start by saying that it has been a very tough heartbreaking journey, at times very gloomy and at times there is a glimpse of hope. My son is presently 14yrs of age and was diagnosed in April 2010 with PANDAS. Besides PANDAS, he is also challenged with autism. My son was put on many abx that made symptoms worse instead of better. He did not improve on abx and symptoms actually increased. Children with autism have difficulty with antibiotics due to their gut issues, yeast, etc.

Autism is also an autoimmune disorder with it's many medical issues that also need to be treated so having PANDAS also can definitely overlap symptoms and make the immune system and child much worse.

 

I am presently seeing a DAN doctor who is treating him for the PANDAS as well as the autism autoimmune disorders. My son was diagnosed with ADHD, OCD, tics, Autoimmune disorder, metabolic disorder, PANDAS. We also tried several steroid tapers, short and long and both caused roid rage..horrible and frightening.

His present symptoms are seperation anxiety, ocd, vocal/motor tics, chorea movements, emotional lability, self injurious behavior(hits his head),excess saliva causing drooling at times, anxiety and adhd symptoms.

 

He just had his first IVIG infusion last Wednesday and thank God everything went well. Everyone was amazed how he sat for 6 hours and remained calm the majority of the time. He was well hydrated and I kept hydrating during and after IVIG. I also premedicated before and after. The very next day at 5am, he woke up with a fever, nausea, vomiting, headcahe on his crown and very lethargic. I know these side effects can occur so I was ready for them. Amazing thing was that even though he was feeling crappy..he did not tic or ocd at all while feeling this way. My son is the type of child that whenever he has a fever, his autism symptoms and PANDAS symptoms dissappear...amazing..doctor says that's proof enough that his symptoms are autoimmune related. He recovered in 24 hours with all side effects gone.

 

Now here is where I need help understanding this roller coaster ride. I have read on this forum that some children with PANDAS are treated aggressively with high dose IVIG. We did .5 grams which is a low dose but take into consideration that my son is 5'11 and weighs 220lbs, so I gather that is alot of IVIG going into him...right? Doctor did not want to start high dose in fear of bad side effects, my son is highly sensitive to many things and reacts to many medications so I can understand his reason. Doctor said depending on how he does with the 1st IVIG, he will gladly increase to 1.0 grams and eventually to 1.5. My son is getting IVIG every 28 days for six months. For children with PANDAS who are also autistic, this is a possible protocol.

 

Can anyone share some light as to why high dose IVIG is better than low dose? Is it different for children with autism who have PANDAS?

 

Has anyone seen a decrease in ocd, tics or rages once IVIG began and if so how long before the symptoms started to decrease?

 

If abx make my son worse, what can I use to prevent infections? I am presently using OLE, will this help?

 

Can anyone tell me if they are using spironolactone and if it is helping their child?

 

And last but not least Can anyone shed some light as to why my 14yr old son has excessive saliva and does not want to swallow, and will only swallow if he drinks. Can this be yeast related, GERD or clostridia?

 

Just want to say that this is a very difficult journey, many nights of helplessness and at times hopelessness. Sooo heartbreaking to see one's child suffer with symptoms that are so debilitating. Once had a high functioning child with autism and now he has regressed to the point where I feel like I'm starting over as when he was diagnosed with autism. I will never ever give up on my son as you all do not give up on your children. The battle is on.....and I am going to get my boy back!!!

 

Please help me understand some of the questions that I am asking, at times it all gets so confusing as to how to treat, what medications to use, how long to use them, what natural remedies to use, how long to wait, what not to use, what doctor to see, what to check for, what infections am I fighting..you all get my point right??

 

As always..I'm so grateful for you all..your help means alot to me and my son. Thank you all and God Bless you and your children....

I have a couple thoughts to throw out there. First, high dose IVIG is believed to reduce inflammationi while lower doses actually can cause inflammation. That is why they believe high dose works better for PANDAS because its also helping with the inflammation in the basal ganglia.

 

Sometimes kids who have lyme as an underlying infection worsen on prednisone as well as antibiotics. With the antibiotics is because of the die off of bacteria flooding which initially worsens symptoms but that means the antibiotics are working. Could also be true with pandas if he had a present infection of strep and had a high die off, I would think??

 

The reason kids with lyme worsen on prednisone is because it lowers their immune response so the bacteria can take hold better.

 

There is one lab that does a lyme western blot that checks all bands, including those that were taken out because of a lyme vaccine they were trying to develop and they didn't want everyone who was vaccinated with it to test positive for lyme so they removed some bands from the traditional western blot. Obviously those bands can cause problems or they wouldnt' have been trying to make a vaccine that would protect you from them. The lab that does that test is called IGenex. They can also check for other bacteria like babesia. (sp)

 

If you do a higher dose IVIG in the future, I would suggest you ask your doctor for prednisone to prevent headaches and nausea. Our doctor also gives benedryl and Motrin to prevent side effects. Between those three things she did not suffer any side effects with two high dose (1.5g/kg) ivig treatments.

 

I'm so sorry you are dealing with autism and PANDAS. I do wonder if some issues that you think are from autism are really pandas issues that will go away in time, with treatment for the pandas. I'd be interested in hearing more about what you learned (a web site maybe) about autism as an autoimmune disorder becasue I have a nephew and a friend's son with autism. One of them was developing normally till age two and I wonder if it was infection mediated. And his sister has a stutter which I've read can also be from infection or autoimmune, possibly, but never found anything that I could really share with them for information other than causual mentioning of it on PANDAS sites.

 

Best of luck.

[ForyouCG]

Thank you...Doctors tested my son for Lyme and it's co-infections and all were negative, but I do have the IGENEX test kit and I will be doing it soon. I believe it's very complicating when PANDAS overlaps with autism. Alot of children with autism have autoimmune issues, gut issues, detoxification issues, multiple allergies, etc. My son was tested for immune deficiencies and his immune system fighting cells are not working effectivelyat all. His immune system is not strong enough to fight the infections and if it does, it continues to fight (attacking self), even when the infection has been eradicated by abx. It's a long story..and it started when he was just a baby.

 

Here are some links to autism/autoimmune:

http://www.vetmed.ucdavis.edu/cceh/pubs/vandewater.pdf

http://www.the farrellfoundation.org/

www.chicagonow.com/fightingautism

http://www.healing-arts.org/children/vaccines/vaccines-auto-immunity.htm

http://www.autismautoimmunityproject.org/

http://www.jleukbio.org/cgi/content/full/80/1/1

 

Momaine...if you need any furthur assistance with information or help for your nephew, I will love to help..

 

All the Best....

[peglem]

I have an autistic daughter, nonverbal, rages in exacerbation (including SIBs and aggression against caregivers). We did not discover the strep until she was 10 years old (because as you probably already know, autistic kids have a difficult time getting even routine medical care). Between ages 8 to 10, my daughter lost a lot of skills that we had painstakingly helped her to develop.

My daughter got much worse w/ the LD IVIG, we think because of the pro-inflammatory properties. She has 2 LD infusions, 3 weeks apart. She has done much, much better on the 1.5g/kg dose. She's had 5 of those, 4 weeks apart. Not sure which treatment is responsible for diminished rages- IVIG or prednisone followed by rifampin/augmentin combo. She seems to slip back a bit every 3 months or so, even w/ the IVIG, though she is no where near as bad as she was a year ago- so we're trending in the right direction. She's learning again- something that frequency of rages would not permit in the past.

[nevergiveup]

Low dose is not inflammatory, this is ridiculous!!! This theory has come about by an article in a medical journal read by some, but the article did NOT say low dose ivig is inflammatory. Ivig can take up to 6 months to see improvement. And if the child has a bad reaction to the ivig, then panda symptoms will be worse short term. It is prudent to start with a lower and raise to a higher, keep raising until symptoms and behaviors are minimized. My immune doc does several autism and panda kids, slowly increases doses so side effects are minimal, measures igg levels, families see behaviors remit around 1700 to 1900. These troughs need to remain high always. I would suggest you talk with doc about every 21 days, ivig half life is really 21 days. Your doc is doing a good thing right now by not starting out to high, a friend of mines child had high dose with pandas and autism, and had such bad asceptic meningitis the child was admitted to hospital for two weeks and very sick and in pain. Some kids just have a harder time than others. My dd had a very bad reaction first dose and I would say it was medium strength. Definately get up to about 1.25 or so but every 21 days, our doc sees this is better timing and again maintains troughs at the levels that minimize behavior. Although, many on this forum, get ivig, it is not done monthly, and mostly for pandas. I think you will find that with both autism and pandas the protocol is different.

[matis_mom]

Not a lot of wisdom to offer, but just hang in there! You are already doing so much for your son, it looks like you have a good doctor too, I hope he seems some relief from IVIG. I don't know if you've caught this yet, but I think IGENEX tests results may be affected by IVIG? You might want to check before you go through the expense, but definitely worth looking into Lyme (I just read something about Lyme-induced Autism, had never heard of it before!).

 

All the best!

 

Isabel

[Iowadawn]

The IGeneX testing would be worth a shot. My PANDAS ds11 came back positive for lyme, Babesia, Bartonella. We have been treating lyme halfway as we have been treating PANDAS for 2 years with really no lasting success. Some symptoms have gone & stayed away, but the anxiety, aggressive/volitile behavior hadn't. The lyme doc said they are finding more & more autistic kids turning up positive for lyme. The thinking is they get it in utero and this compromises their very immature immune system, setting the stage for hypersensitivities to everything under the sun and then the autistic symptoms set in. My WB will be back in about a week. Hope it lights up like a C'mas tree. Strange, but that is what I hope.

 

Dawn

[ForyouCG]

Thank you all for your replies, I truly appreciate it.I was worried about the low dose IVIG being pro-inflammatory, as I read many times in this forum that it can be. If there is such a thing..then can someone please send me the weblink to show my son's doctor. Like "nevergiveup" said, some kids have a harder time than others with IVIG and with children with autism it may be different..don't know, just my opinion.

 

I have a dear friend in another state who's child is 6 yrs old with autism and PANDAS and has gone in total remission from both with just 6 IVIG's. Makes you wonder if it was PANDAS all along. I also wonder about that with my son, as when he was very young, how autism symptoms would dissappear when he would be on prednisone for asthma and how when he would get a fever, there was no autism...hmmmmm.

 

As far as yeast issues in the gut...what are some of you using to eradicate the yeast?

Presently, I am using diflucan made from a compounding pharmacy, because my son cannot tolerate any dyes or additives and a good strong probiotic. Don't quote me on this but I read that Nystatin is made from a form of strep bacteria so that scared me enough not to use it. Whether good or bad strep...can't use it for my son. If anyone looks into this..can they clarify this information. Would not want to misinform anyone here...everything is already soooo confusing as is.

 

Once again...Thank you all and God bless....