ForyouCG

I'm sorry, let me clarify myself...when I say IVIG issue I mean IVIG dosage.

Hello everyone..please forgive me for bringing this topic up again as I know it has been discussed several times here and I have been advised from some of you so kindly but I am confused. I dislike feeling this way especially if I am trying to help my son heal. Some parents here have said high dose IVIG is more effective than low dose IVIG. Some parents have said low dose IVIG can make or made their child worse. Some have said high dose is anti-inflammatory and low dose is pro-inflammatory. Some doctors only do high dose IVIG. Some doctors start low dose and gradually increase to high dose. Please help me understand this...It's hard enough understanding PANDAS, well now I find myself wondering..if I am helping or hurting my child with this IVIG issue. Do I see improvement from just 2 IVIG infusions so far? Yes, baby steps..but I see it and he feels it. Four more IVIG infusions to go...so I want to believe I'm helping him. So please..any information will be greatly appreciated. Oh one more thing...Is there proof, such as on paper that says high dose IVIG is more effective for PANDAS than low dose IVIG? Thanks and best wishes to all.. Maribel

Thank you kimballot for your prayers and kind words, he is feeling better thank God. I too am praying for all of our children to be healed...

My son has both and I agree with peglem, I believe it was PANDAS all along that caused the autism. My son was diagnosed with PANDAS at 14, his present age and has regressed quite a bit. Looking back, I can see many PANDAS symptoms that were taken for autism as both of these symptoms may overlap. I was always puzzled as to why my son when very young and diagnosed with autism would improve dramatically with autism symptoms when on steroids, antibiotics or when he had a fever. Was it really autism...or was it PANDAS all along?

Yes, my son was very scared, we all still are. His life changed March 2010 but was diagnosed with Tourettes in October of 2009. Was it really Tourettes? More like PANDAS symptoms back then. I have 2 doctors treating my son, I have a very good DAN doctor who treats children with autism and PANDAS and also Dr. Trifiletti who diagnosed my son with PANDAS. Very blessed to have them both for my son's recovery..

Hello PhillyPA, just read your PM, thank you...my son is presently 14 yrs old and regressive autism just happened 8 months ago. My son changed from one day to the next. Being challenged with autism was never an issue. PANDAS struck and our world was turned upside down. I agree with what Peglem says in other post, she says that PANDAS is what may have caused her daughter's autism while very young. I too believe this is true for my son. It just doesn't add up sometimes...

Thank you so very much for your prayers and well wishes. I am deeply touched by all of you. 2nd IVIG was a toughy..he was poked 6 times with IV needle. Everytime they got the IV in a vein, the vein would blow. My poor guy was in pain and discomfort. The hardest part was holding him down through this while he was also having bad motor tics. It was sooo heartbreaking.. The infusion started at a slow rate but then within the hour the doctor infused it alittle faster and oh my gosh, my son started getting such a bad headache, holding his head and crying. Doctor immediately lowered the speed and gave him toradol and valium through the IV which helped. I was so scared and sad..So hard to see one's child suffer. Thank God today he has no side effects, just a mild headache which I am treating with meds and lots of hydration. He's feeling better.. Slow recovery but he's recovering.. Will never give up until I get my boy back. Thanks again and God Bless you and your children. Maribel

Tomorrow will be the 2nd IVIG infusion my son will be receiving. Please say a prayer for my boy Chris. I am trying not to feel nervous but I can't help but to feel that way. After the 1st infusion, he got a little worse and it is now that I'm hearing some words again. As I have mentioned, my son is autistic and was very verbal before but when PANDAS struck, he lost alot of speech, what I call regressive autism or probably PANDAS all along. Time will tell. You all have helped me tremendously...and my prayer is that I too can help others. Thank you and God Bless Maribel

Hi Melanie, may I ask you how many milligrams of celebrex you are giving? My son's doctor prescribed it also, he prescribed 100mg. Do you know if it can cause stomach discomfort? My son had to stop taking Ibuprofen because it caused this and he gets alot of headaches due to inflammation, motor tics and some ocd. Presently I am using natural anti-inflammatories. Will appreciate any information...Thank you Wishing you and your child the best...

Thank you all for great information..

Thanks Nancy, my son is also challenged with autism and he's allergic to alot of things. He is presently on a gluten and casein free diet which has been very beneficial in lowering gut inflammation as well as brain inflammation. He doesn't eat things with dyes, artificial flavors, high fructose corn syrup, etc. I have been giving him an excellent natural product called Acid Ease and it has been helping. If I give him any medication, it has to be dye-free so the majority of the time I have to get his meds through a compounding pharmacy. Antibiotics and any NSAID's cause him severe stomach discomfort. I do give him enzymes and probiotics. Ever since he was diagnosed with PANDAS, he has been having headaches. If there is brain inflammation going on, headaches can occur, if the vocal/motor tics are present and they are non-stop, he gets a headache, if there is ocd (repetitive phrases all day), he gets a headache. Believe me..I understand why.. I also blame it on heredity, as my grandmother, my mother and myself get headaches more than often. Just wish I can give him something to prevent them that won't hurt him.

Hello everyone, I need your help with headache medications. Previously I was givig my son Ibuprofen for headache pains but now the Ibuprofen has caused stomach discomfort..more like acid reflux. I was giving it to him with meals but it still caused discomfort. He suffers from headaches, which to me is basically PANDAS brain inflammation. Ibuprofen did help take away the pain and relax him when experiencing any exacerbations..and now I cannot give him any NSAID's. His doctor does not want me to give him Tylenol because tylenol depletes glutathione which he has little of. Soooo...what am I to give him for inflammation and have it not cause any stomach discomfort? What medications or natural alternatives can I give my son to help with these debilitating headaches? He's due for his second IVIG on Wednesday and I'm very scared for him. What will I use for pre-med against a headache and after IVIG? His doctor does use Toradol in the IV which bypasses the stomach this way, but what am I to use at home? Please..help.. Thank you all.. God Bless Maribel

"IT"..I dislike this "IT"...no...I HATE "IT". I hate it for trying to take my son captive with it's tics..ocd..anxieties..rages. I hate it for causing my son to suffer in such horrific ways. I hate it for keeping him homebound..when before "it" came into our lives, he was free. I hate it for trying to make me feel hopeless, helpless and heartbroken. I hate it for it's mystery and confusion. I hate that I don't know what infectionS my son is fighting at times. I hate that I have to give my son medications I'd never thought to give him. I hate the thought of taking my son to a hospital and confronting the non-believing doctors who would rather treat your child with antipsychotics and not an antibiotic. I hate it for coming into our lives...as if autism wasn't enough for my son to live with. BUT.... It can never take away the love in our family. It can never take away the faith we have in God. It can never take away our peace and joy even when we walk through the dark valley. It can never take my son's strength and bravery. It can never take away my son's purpose in life. It can never take away my fire to keep fighting and never give up. It can never take away My Son...I won't let it!!!!! God Bless you all... Maribel

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....

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....

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....

Hello everyone, Please..I'm hoping someone can shed some light as to why my son is having bad headaches everyday. This has been going on and off since the PANDAS diagnosis but has really been getting worse for the past 3 weeks. I know I mentioned this before but for those that don't know, my son also has autism which is also an autoimmune disorder. Let me start by catching everyone up on what's been going on with my son. I finally went to see a D.A.N doctor and he is very compassionate and also very experienced with PANDAS and autism. He treats both..children with PANDAS and children with autism. He is God sent..an angel. I also want to mention that I got my son's labs from Dr. T...another God sent angel... where it's showing very low IGG subclass 4 (5.7), ASO was high, lyme 39KD (IGG) BAND is reactive, Ebstein-Barr VCA AB IGG is high and Streptozyme titer was high. Clearly he's showing immune deficiencies. For the past 4 weeks his OCD symptoms ( phrases he constantly repeats for a certain amount of times and wants me and only me to say "Okay" to, and if I don't, he will fall apart) has gotten worse and when I say worse I mean he can do this for the whole entire day which causes him severe anxiety and frustration. He has also developed extreme anxiety when he is taken outside (this is also due to his extreme sensory sensitivities), so I have to turn right back home regardless of how far we've driven. I can't go anywhere with him and I can't go anywhere without him due to his severe seperation anxiety. I can't leave his side and if I do he becomes really anxious and comes looking for me. The OCD symptoms are the most debilitating of them all. His vocal and motor tics sometimes creep in but he can go days without them. Getting back to the DAN doctor, my next appt is next week. DAN doctor sent us to get some blood labs done and urine, blood labs were 20 tubes, I almost fainted just watching 20 tubes of blood being drawn from my dear son, but he is a warrior and did well. Presently my son is on abx and I give him Ibuprofen 400mg when I see irritability setting in as I have seen that Ibuprofen calms him and takes the edge off. I also give it to him to prevent the headaches he's been having lately. Now as far as these headaches, they come on all of a sudden. He starts holding his head and says "Oh my aching head" and then goes on to say "Sad...crying". At this point I will give him Ibuprofen and sometimes he's taken the Ibuprofen already but it hasn't kicked in yet. While this is happening the OCD (repetitive phrases that he wants me to say "Okay" to) increase and cause him great distress. At this point...this is what makes me freak out and very nervous the most..he starts punching the top of his head and crying unconsolably, the pain becomes unbearable for him. My heart of course breaks into bloody pieces just seeing him go through this. If I try to stop him from hitting his head, he gets more frustrated and can become aggressive with me, which then he apologizes for afterwards. I do manage to put a cold rag on top of his head and he allows this as I see it brings comfort. I also immediately have to drop lots of pillows on the floor for safety because he falls to the floor and tries to bang his head on the floor. Prior to PANDAS, my son never had bad headaches such as these or hit his head or was aggressive, now this has been going on for the past 3 weeks. I spoke to another mom with a PANDAS autistic child and she said the headaches were a symptom of brain inflammation. I believe this to be true. What can someone tell me about these headaches..Are headaches PANDAS symptoms?...Are there other parents out there that are experiencing this with their child?...Are the headaches a symptom of brain inflammation? and if so does that mean the BBB is open? What are you giving as a medication to relieve these headaches? Dr T and DAN doctor mentioned IVIG for my son, and that is will be considered. I also want to mention that my son suffers from nasal allergies which have gotten worse and every morning he wakes up with a congested nose and sneezing which I know also contributes to the headaches and PANDAS symptoms. He was on flonase for nasal allergies but made things worse and not better. Can strep live in your nasal passages? I've heard this before and I wonder if this is why my son seems to be getting worse at times. Please..if I can get my questions answered and some advice, my heart appreciates it. You all have helped me help my son tremendously as I try to read as much as I can. I apologize if I don't get to post often..it's been really rough and heartbreaking lately.Sometimes I just drop to my knees and cry..wondering if I can make it through another day. It breaks me up to see my son go through so much and feel there is nothing I can do to bring him comfort. There is not a day that goes by that I don't shed tears for him and all the children battling this crippling disorder. I thank God for you all and may we continue to advocate for our children and do everything we can to help them get better. God bless you all....Thank you

It is GREAT that you are seeing some positive changes with medication! It is always hard to know what to look for when you start, but any it sounds like you are seeing less irritability and that is good. I would not get TOO nervous about some temporary increases in symptoms shortly after taking the antiiotic. It is interesting that this is happening one hour after taking the medication each day. I am wondering if this is some sort of Herxing, which happens when there is die-off of bacteria (I beleive it also happens with die off of yeast) and toxins enter the blood (http://en.wikipedia.org/wiki/Herxheimer_reaction) Chemar has made some good suggestions of things to do to help with herxing - see http://www.latitudes.org/forums/index.php?...art=#entry68890 . Regarding diflucan and augmentin - I've wondered about that myself. I believe it is OK to give them both at the same time (others may have heard differently and it would be great to hear that)... but right now I am separating them when I give them to my son. From what I understand (and this is limited) the important thing is to separate the probiotics from the antibiotics by several hours as the abx can reduce the effectiveness of the probiotics. I think you mentioned in a previous post that you were going to see a DAN! Doc. Have you been able to do that yet? Would post and let us know what the DAN! doc says about this when you hear. I would love to find out. It sounds like you have a very good picture of all the gut issues and your son's specific sensitivities- he is a very lucky boy. Finally... please be sure to journal your son's behaviors. Sometimes I have trouble "seeing the forest for the trees" ...and I get so caught up in each behavior that I do not realize that the overall trend is moving in a positive... or negative direction! Thank you for your response, so glad you told me about the die-off reaction, it can be a possibility. For die-off reactions I give him epsom salt baths and Ibuprofen. I'm alittle skeptical about giving him charcoal tablets because he is on Intuniv 2mg which is a time release med to help with the tics and impulsiveness. Can the charcoal tablets affect the intuniv med in anyway? You mentioned you seperate the diflucan from the antibiotics, how many hours apart do you wait to give the diflucan? And do you also give a probiotic while giving Diflucan? As far as the DAN doctor, yes I have an appt within two weeks...so looking forward to seeing this doctor. He also addresses PANDAS as well as autism. Expensive..ouch..but hopefully and prayerfully worth it. I will definitely keep everyone posted on the treatment and outcomes. You are right about keeping a journal, I do write daily about everything..positive or negative. This is so important for us to see progress or not and the doctors to see it also, it helps to put the pieces together. I have another quick question..I'm noticing my son's allergies are acting up so far since the exacerbations..congestion, runny nose, sneezing, itchy nose, etc. This can also be a possibility that he's been having exacerbations right? Strep can live in the nasal passages right? Virals or allergies can cause exacerbations also and can also cause the BBB to open right? So what about an anti-allergy med. Do you or anyone know about Singulair and how heplful it can be? Again so sorry with the questions, but I trust that you all are sooo helpful and informative, thank you. You're son is also very lucky to have you for his mom...God bless you and your son..

Thank you, I just emailed Dr. T "URGENT", in these situations you want to do the right thing and know that while in desperation to help prevent PANDAS symptoms in your child, you are doing and taking the neccessary steps to help. A mother's heart can never go wrong and I truly believe when our children are in danger or sick we are "Mother Warriors", we will do what it takes to save and heal our children. To walk by faith especially... Did you use probiotics or an anti-fungal for your dd while on antibiotics?

Thank you, your response is very helpful, your support means so much. So glad your son is doing well on Augmentin XR and may he continue to do so. God Bless you and your son....

Hello to all, I need some advice on what to do with this situation. My son was experiencing an exacerbation of ocd and some tics, he's also been more irritable than usual. I was so scared again, I QUICKLY called Dr. T for help and I was told to put him on the Augmentin XR 2000 mg right away. I was also concerned about the yeast as he so easily gets Candida everytime he's on antibiotics, even if he takes probiotics, so Dr. T told me to give him Diflucan at the same time. This will be the second day and he has only taken two dosages and I have seen the irritability decrease, he seems more relaxed but everytime I give him the antibiotic, his ocd (repetitive phrases that he wants me to repeat) skyrockets and it will last for an hour or two and at times throughout the day. He also becomes more anxious and the seperation anxiety increases. I guess my question is how do you know when the Augmentin XR starts working? What am I to look for? I worry when within one hour of the antibiotic, I see he gets more anxious and can't stop repeating phrases and pacing. Is this a side effect to the medication? Does this mean it's working? After all of this then eventually comes the calm with ocd and anxiety decreasing just alittle. Is there a possibility that they can get worse before getting better on the AugmentinXR? Do I give him the Diflucan at the same time I give him the Augmentin XR? I know I should of asked Dr. T at the time, but my son was having a moment and my mind was on overwhelmed so please forgive me. I just want to help him get well and not suffer another episode, we've been through so much since March. Please God no..... One more thing, I mentioned this before...my son is challenged with autism so he's very sensitive to all medications, especially antibiotics. He has gut issues which I treat with enzymes, probiotics and natural anti-inflammatories. Want to do what's best for him, but I have to treat both..the PANDAS and the Autism and not cause harm. Please.. any advice and answers to my questions would deeply be appreciated. Thank you all and God Bless..

Thank you Stephanie2 and God Bless your two boys...I am going to make an appt with a DAN doctor by the name of Dr. James Neubrander, he's in New Jersey. From what I have researched, he's really good. My son is on a GFCF diet and takes a great multivitamin with minerals and anti-oxidants, probiotic and ezymes. It's amazing how I must treat both..the autism and the PANDAS..both autoimmune disorders. Double whammy If you don't mind telling me, what is the name of the probiotic you're giving your boys? As far as the spironolactone, is that a prescribed medication? Is it used for autism or PANDAS? Or both? How would the doctors detect the bad bacteria in the gut? Is it through a blood test or some other test? How was the IVIG procedure done for your son? Was it done in the hospital by a doctor or nurse? Did you see any side effects? I apologize in I'm asking too many questions, I hope you don't mind. I wish you and your precious boys the very best....

Fixit...IVIG is an option I'm sure, but I have to educate myself more about it before I make that decision. If it comes to that and it's something that will help heal him then I will do it. I must be honest and say once again that this is all very new to me and I am learning day by day about PANDAS. Some of the treatments can be a little scary but I don't want to see my son suffer with this disorder neither. This is why I like getting advice from you all. I need it...it helps me understand...it helps me figure things out. Thanks.....

Peglem...that is so interesting. I feel that may be true with my son. When my son was a baby, he had eczema and severe colic and would spit up quite a bit. Then when age 3, he had many ear infections, allergies, sinus infections, strep throat, one negative posititve which turned into scarlet fever, asthma and diagnosed with PDD-NOS at age 3 1/2. I've always had a feeling in my heart that would make me feel something went horribly wrong with his immune system. He is 14 yrs. old now and the drastic PANDAS symptoms really started to occur in late March, prior to this in October he was diagnosed with Tourettes and as months went by, the vocal tics got worse. Prior to October, in September he had another strep infection. Now looking back at things the pieces of the puzzle are starting to fall in place. It's tough....Heartbreaking...but we must continue to go on and do the very best for our children no matter how hard it gets. At times it feels like an unending battle and you're sinking in deep waters, but I also know that there is a merciful God who will never forsake us.