Indigo Posted September 18, 2008 Report Share Posted September 18, 2008 Hello, My dd will be receiving the IVIG treatment soon...for parent who have btdt, what is the actual treatment like? I know my dd will need a sedative, she is 74 pounds and absolutely fights all medical tests/interventions...even getting her to walk into the hospital will be an impossibility without sedatives...I hope that they can find one that works. How long is the actual treatment itself? Does it hurt or make her feel funny in any way? Thanks for the help in advance! Link to comment Share on other sites More sharing options...
Indigo Posted September 22, 2008 Author Report Share Posted September 22, 2008 Hello, My dd will be receiving the IVIG treatment soon...for parent who have btdt, what is the actual treatment like? I know my dd will need a sedative, she is 74 pounds and absolutely fights all medical tests/interventions...even getting her to walk into the hospital will be an impossibility without sedatives...I hope that they can find one that works. How long is the actual treatment itself? Does it hurt or make her feel funny in any way? Thanks for the help in advance! Another question is how do you get a diagnosis code for IVIG for PANDAS treatment? My doctor is having a hard time with this. Link to comment Share on other sites More sharing options...
bmom Posted September 22, 2008 Report Share Posted September 22, 2008 Sorry no one has helped on this. I hope they do, yet I am not sure many have gone through IVIG yet. I can tell you I have spoken with some and a fever and some vomiting seems to be normal, but not bad. Please keep us updated as we are considering this route. Link to comment Share on other sites More sharing options...
peglem Posted September 22, 2008 Report Share Posted September 22, 2008 Hello, My dd will be receiving the IVIG treatment soon...for parent who have btdt, what is the actual treatment like? I know my dd will need a sedative, she is 74 pounds and absolutely fights all medical tests/interventions...even getting her to walk into the hospital will be an impossibility without sedatives...I hope that they can find one that works. How long is the actual treatment itself? Does it hurt or make her feel funny in any way? Thanks for the help in advance! Another question is how do you get a diagnosis code for IVIG for PANDAS treatment? My doctor is having a hard time with this. I can't tell you what IVIG is like-never been there. But, there is no dx code for PANDAS, nor is IVIG considered standard treatment for insurance purposes. Most insurance will only cover IVIG for immune deficiency or sometimes for autoimmune disorders. It has not been proven that PANDAS is autoimmune...so, in order to get insurance to cover, your doctor will need to dx something that insurance will approve it for. Link to comment Share on other sites More sharing options...
blake Posted September 30, 2008 Report Share Posted September 30, 2008 My son woke up a different child with PANDAS on Jan. 11, 2007. He has had IVIG now 2 consecutive days monthly for four months and is approved for 2 more months. The worst part of the procedure is getting the IV started. A home healthcare nurse comes to the house which is very convenient. Last year he did have 2 consecutive days at the hospital and did fine since I took his favorite movies and toys. At the hospital we were there a total of 7 hours each day. A lot of waiting for the IG, waiting to get started, being observed a while afterward..... At home, I already have the IG shipped to me and ready and all of the supplies ready for when the nurse walks in my door. After getting the IV started, he receives a saline drip for 15 minutes, then the IG for a little over 3 hours, then 15 more minutes of saline drip. The nurse checks his vitals every hour. His arm is wrapped on the first day so he can keep his IV in over night. I pretreat with tylenol to prevent headaches. I now pretreat with zofran for nausea because he did throw up twice after the first treatment. He now has no problems. I have seen no significant progress. But my son is more complicated - he has autism (was high functioning until this), his anti DNAS B titer was greater than 2720 when he was diagnosed, and he ended up unable to walk, lost all daily living skills, lost fine motor skills, and is now mute (was very verbal). He also was aspirating due to muscle incoordination with his throat and now eats solely through a feeding tube. He was diagnosed with sydenham's chorea in addition to pandas, though they do overlap with symptoms of OCD and tics. He now walks, but still in diapers and fed through a tube. His OCD is pretty close to the level before PANDAS and the tics are mostly facial tics still. I was told IVIG would take more treatments due to his autism (per Dr K). So as far as success or not, most probably can't compare because of the many other symptoms all related to strep throat. He is on penicillin until he's 21 and he sees a DAN doctor for supplements and different meds. We try everything and will continue until we get our son back. He had his tonsils out 3 weeks ago which were chronically inflammed due to repetitve strep. Hopefully that will help. Oh, also, his strep titers never returned to normal (ASO did, but not dnase and I have heard they would not be accurate unless it has been 3 months from his IVIG. After two more monthly treatments, we will look at what progress was made, and consider more treatments, or plasmapheresis. Has anyone had that? I know there are doctors out there who claim strep can't cause brain inflammation but I don't believe because how can all of us with overnight changed children and a recent strep illness be a coincidence? He has seen 5 neurologists of which none are helpful. He did recover fully last April after a 5 day steroid burst which I was told meant IVIG would work because of the significant improvement shown by that burst. So I'm still hoping. I never imagined strep to be the monster it is. I don't know if this helped at all, but at least you know the procedure of the IVIG. Link to comment Share on other sites More sharing options...
Pudgeo Posted September 30, 2008 Report Share Posted September 30, 2008 Wow Blake, my sons fever was at the end of Jan 07..around the same time and we are still dealing with symptoms too! He did a good job of describing the IVIG..They give my son benedryl and it wipes him out..I'm very lucky..my son loves going into the hosp. and picking out videos and laying there being pampered by the nurses. He was nver sick after ward..my friend's son had 2 day IVIG and was very sick for a day after..flu like symptoms but then was fine. We have had 3 and I wish it was the magic cure but so far no and we are doing HBOT. I would like to possibly do one more IVIG after the HBOT...Sarah Link to comment Share on other sites More sharing options...
Indigo Posted October 2, 2008 Author Report Share Posted October 2, 2008 My doctor is considering using the subcutaneous IVIG in his office. My insurance said they will cover it when I called. But I'm still nervous about it! Link to comment Share on other sites More sharing options...
EAMom Posted October 2, 2008 Report Share Posted October 2, 2008 Wow Blake! I hope things turn around for your son soon. Have you considered using Azithromycin instead of Pen (or even with Pen)? Azithromycin gets at intracellular strep (Pen, Augmentin, Cephalopsorins don't) and it is also immunomodulating/anti-imflammatory. That was the antibiotic (the 4th one we've tried) that sent my dd into remission (no IVIG but would certainly consider if things get bad again) after 5 mo. of PANDAS. Others have had success with it too. My dd is about 50 # and she is still on 250mg/day. The rheumatologist said to do that for another year...and then we'll decide our next step. Link to comment Share on other sites More sharing options...
Chemar Posted October 2, 2008 Report Share Posted October 2, 2008 Indigo I know nothing about IVIG other than that a young girl from our church is having it for complications from Lyme Disease and is having really bad side effects. They are continuing the treatment tho but I know it is proving hard going. This could be related to the severity of her condition (possible Lyme induced MS suspected at this point) and so again I dont know how relevant this is to what is done with PANDAS kids. I guess the benefits must be outweighing the side effects if they are continuing tho. Link to comment Share on other sites More sharing options...
Indigo Posted October 2, 2008 Author Report Share Posted October 2, 2008 EAmom....is that similar to clarithromycin? My dd's PANDAS suddenly came back today...it was her first day off of the prednisone...ahhhhhh...grrrrrr. She was doing so great on the prednisone. If only that were a cure!! She's back on the clarithromycin but it doesn't seem to be doing a thing. I gave her an Advil this evening as well. Link to comment Share on other sites More sharing options...
P_Mom Posted October 3, 2008 Report Share Posted October 3, 2008 Cheri, What kind of side effects is she having? Link to comment Share on other sites More sharing options...
guy123 Posted October 3, 2008 Report Share Posted October 3, 2008 Isn't staying on antibiotics for years generally not recommended? Also, why do I keep hearing about people throwing up from IVIG? Link to comment Share on other sites More sharing options...
Pudgeo Posted October 4, 2008 Report Share Posted October 4, 2008 I think when kids throw up after IVIG it is because it is such an internal shock to their system....their immune system is being flooded with new antibodies. My son has always been fine after..maybe a little sleepy and a headache. My friends son was flu-like after a 2-day IVIG but was fine after the feeling yucky day... As for the poor little girl with Lyme..she will probably need several IVIG's to get better. I think it is rare one will do the trick.. Alot depends on age of the child too.. I am considering going back on azith since I feel it did help ( and now we have the outbreak of impetigo..aarghh) Some kids immune systems are so out of whack they need the azith to stay regulated. I do worry about the long term effects of all this too... I am trying a product by VRP called Epicor..would love to hear feedback from others if they have tried it? It's an immune modulator & anti-inflammatory... Sarah Link to comment Share on other sites More sharing options...
pmoreno Posted October 7, 2008 Report Share Posted October 7, 2008 Is it the high dose IVIG? Which doctor did you use? Dr. K told us that generally it just needs to be done once (for 2 days) - very rarely does it need to be repeated. Pat Wow Blake, my sons fever was at the end of Jan 07..around the same time and we are still dealing with symptoms too! He did a good job of describing the IVIG..They give my son benedryl and it wipes him out..I'm very lucky..my son loves going into the hosp. and picking out videos and laying there being pampered by the nurses. He was nver sick after ward..my friend's son had 2 day IVIG and was very sick for a day after..flu like symptoms but then was fine. We have had 3 and I wish it was the magic cure but so far no and we are doing HBOT. I would like to possibly do one more IVIG after the HBOT...Sarah Link to comment Share on other sites More sharing options...
pmoreno Posted October 7, 2008 Report Share Posted October 7, 2008 Isn't staying on antibiotics for years generally not recommended? Also, why do I keep hearing about people throwing up from IVIG? My daughter just went through it this past weekend, and she threw up about 5 times & had a horrible headache and stomach ache for about 5 -6 hrs. It has something to do with the intra cranial pressure. Pat Link to comment Share on other sites More sharing options...
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