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....