brittanys mom

We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice. Oh we do the IVs at home Melanie What is the reasoning for monthly. I thought the IVIG treatments are recommended to be 90 days apart. What is the dosage he is getting? How many IVIG's has he had? Thanks for the info. We are going to need to get my 14 year old in for IVIG so I want all the info. I can get. She had 2 round back in 2006 30 days apart and had a bad reaction to the 2nd dose. The Dr. we had never followed through w/ antibiotics after the IVIG, so here we are. The second IVIG she had did help w/ her painful tics but all her other symptoms still persisted. Thank you and good luck.

First of all, we are not yet at 100% but the only path to any improvement started in August (17yo) with tonsils pulled, no antibiotics. Saw definate improvement within 10 days. October started Augmentin, but too low dose at 500 twice daily and a month of steroids. Saw another improvement to about 75% but back sliding as soon as steroids stopped. Increased Augmentin to 875 twice daily in mid November with no improvement for the next month and a half. January changed antibiotics to Zithromycin 500 mg daily, got brother treated with full strength antibiotics for very elevated strep titers, and repeated month of steroids. Day one of steroids this time saw improvement to 95% which lasted the entire month at 85%, (as the month goes on they step down each week with the steroid dose). Unfortunately, here we are, two weeks or so after stopping the steroids and dd17 last night told me she needs to be put back on the steroids because she is struggling again and is exausted. For us the steroids have been wonderful to get her baseline improved. We will be discussing IVIG at our next appointment with Dr. B. We have tried everything to date and believe IVIG is our only last step. I will say the second steroid month gave us such better improvement than the first I think due to her brother getting treatment. It was pretty amazing to see it work so fast. Good luck. memom I am not sure if this is absolutely true but, I heard that the steriods are only a temporary fix. Once the child goes off of them symptoms return. Did you ever hear that? This is maybe why she is slipping back every time she goes off of them. IVIG may have to be the answer for you.. Of course I have learned the hard way to make sure the antibiotics have to be continued for quite some time after the IVIG treatment. On common thing I have learned from all the reading and from this forum seems that if the PANDAS is not caught right away and treated IMMEDIATELY w/ antibiotics most kids end up needing IVIG. Good luck to you please keep me updated. We are in the same boat as you right now.

One reason Dr. K feels it should be done ASAP becuse of her age. 14 is I guess on the high end age spectrum of PANDAS. And for the length of time she has been sick(10 years). From what I understand, and please anyone who knows this is false reply, but, the older the child is and the longer the child has been sick the harder it is to treat.

Thanks for the reply. She weighs about 150lbs and is about 5'10". She is a big girl. Back when she had the IVIG done maybe she weighed 100lbs.? I really cannot remember. Thanks for the antibiotic info.

If you do not mind me asking, what helped your daughter get better? Dr. K mentioed dealing w/ older kids w/ PANDAS as with children that have had it for a long time is a little more difficult. I know we have a long road ahead of us but since your daughter was on the older age spectrum of PANDAS like my daughter, I am just curious as to what finally helped her.

Honestly there is no antibiotic history. Other then the Dr. maybe giving her a 14 day course of antibiotic when I knew she had strep in 2001 and again in 2006. She was never on them. There was no mention and she was not on them after the IVIG either. As I mentioned in another post I was very upset when I found out a few weeks ago from Dr. K that that is where we went wrong. Our Dr. never said anything about it. I do have her on regular Augmentin 875mg. 2x daily. She has been on it for about 16 days now and I will try to convince our pediatrician to keep renewing it until we decide what our next step will be. Thanks for the suggestion about getting the whole family tested for strep. Great idea. Also, why is everyone mentioning the augmentin XR? Is that better then the regular Augmentin? As far as how much IVIG she had. I am not sure. I know Dr. K mentioned 1 1/2 grams per kilo. When I mentioned that to my neurologist he though that was ridiculous, so my guess is she must of had less then that.

To answer your question, no she was not on long term antibiotics after either one of her IVIG treatments. Was never mentioned by anyone. Do not forget this was back in 2006. In fact my daughter was the first patient that this neurologist ever sent for IVIG let alone 2 rounds. I am very disapointed that I never knew this. I guess it is water under the bridge now. However, I did ask her pediatrician to prescribe 875mg. of Augmentin 2x daily. She put her on it for 14 days and then I had her renew it. She has been on for about 16 days now. I am hoping that she will continue to renew it until we get somewhere w/ one of these Dr.'s and decide what our next step will be. I figured antibiotics in the mean time could not be bad for her. My daughter does not see a difference but I see quite a difference. She has clarity in her eyes like one of the moms posted. She is engaged, not at all as irritable, seems happier, and will even let me touch her. She does not like close contact and I always wondered why. I think it's the PANDAS. I feel like I am getting little glimpses of my girl back. Let me ask you. Do you know what the long term effects are of having a child on prophylactic antibiotics for that length of time? Believe me people ask me and I really do not know the answer but, it can not be as bad as what we have all dealt w/ with the PANDAS. What is the antibiotic your son is on and what is the prophylactic dosage???? Thanks so much. I agree with the choice of Dr.'s. Dr. K in my opinion definately seems like he knows what he is talking about.

My daughter has been sick since 2001. 2001 started w/ recurrent sore throats, strep, & she immediately started slight tics, and we started to notice some OCD. Tonsils removed end of 2001. In 2002 teachers noticing focusing problems, has trouble breathing was misdiagnosed as having asthma. Put her on Advair, abuterol, and singular for the asthma. Of course tics get worse, they are changing though now she has vocal tics and rolling her eyes. Trouble breathing lands us in the ER @ least three times. End up she is having panic attacks. Take her off all asthma meds. continues having a lot of trouble focasing and staying on task in school for the next few years. Tics still continue she is getting frustrated and smashing her head into the desk @ school and into walls @ home. Begin seeing a psycologist. EVERYTHING is a struggle for her. Horrible seperation anxiety and has to sleep w/ us every night or she throws up. 2003 her neurologist diagnoses her w/ ADHD and starts Straterra. She immediately goes off because it is bothering her stomach. She then starts on 0.1mg. Cataprese(1/2 in AM, 1/2 @ noon, 1 in PM) Fortunately it does help the tics a little and the ADAD slightly. We begin testing her in school to get her classified in 2004 so she can get extra help and an IEP. Takes most of the school year to do but she did qualify and began getting the extra help in school by the end of 2004. 2005 anxiety is still a major issue and tics were being controlled pretty well by the cataprese. 8/05 gets a strep infection and sudden onset of severe tics last for a few weeks. Starts taking Zoloft beginning of Sept 2005 for her anxiety. 12/05 two days before Christmas another strep infection and worse tics she has ever had. Opening her mouth as wide as she could MULTIPLE times a minute. She is giving herself TMJ and is severe pain. Completely withdrawn. Sleeping all the time because that is the only time she is not doing the tics. Mid. Jan 2006 neurologist puts her in hospital for IVIG. It helps initially for a week then after a week the tics return full force. Trying to give her mustle relaxers for the pain, nothing is helping. Went to CHOPS they did nothing but give her Tylenol and told us to make an appt. w/ their neurologist. We were in crisis mode and our daughter was in severe pain. Crying constantly from the pain and unbable to go to school. We contacted Dr. K in Chicago and he said that he was not suprised that the effects of the IVIG only lasted a short time due to the fact that she has been sick for so long. He told us to wait 30 days from the last IVIG treatment and to repeat the IVIG. On the 30th day we put her back in the hosp. for another round of IVIG. Had a bad reaction(her body was uncontrolably trembling almost like convulsions, but she was not having convulsions). Turns out at that time they were recommending to go every 30 days for the IVIG treatment if need be. Now they recommend at least 90 days between treatments. I think her body just got to much of the IVIG. Anyway the second IVIG did help the tics and she was finally not in excrutiating pain and able to function again. We were so happy to see the tics get better that we never thought a thing about any of the other lingering symptoms. As the years have gone on it has been a constant struggle for her. Thank goodness the tics have improved and all she does now is roll her jaw and it clicks from the damage she had done to it. She does not tic constantly though like she had in the past. Her OCD continues although not severe every thing has to be in pairs(if you kiss her you have to kiss her twice, when she puts her glass down she has to tap it twice ect..).In 2007-2008 we started to see more of a change in her behavior in school. She was "zoning out" a lot. Seemed like 80-90% of the time her behavioral outbursts were out of her control. She would throw pencils, slam books, jump over desks; impulsive behaviors. Physical activity seemed to help a little(walk around the school, go to the weight room). After she would have these outbursts she would be very remorsful and get very angry at herself because she did not understand why she was doing what she was doing. She was always very truthful and rarely lied about actions and often told an adult prior to being "caught". She had bad mood swings throughout the day. She embarrasses easily and will respond to teachers especially when she trusts that adult. She has very sloppy handwritting, has dificulty making decisions, and gets a lot of headaches. She gets angry and frustrated easily, and feels panicky quite often. To put it mildly she is really having a tough time in school. She is a freshman in HS now and her case manager thought it would be a good idea to have a psycological eval. done. We did and the Dr. of course saw depression and anxiety and wanted to start her on Prozac and Xanax right away. I got to thinking. Maybe this is all still the PANDAS. Maybe she was still not better. Maybe all we did is just make the severe tics go away and all these other symptoms are still effects of the PANDAS. The more I read, and the more research I did I realized it was. HOW STUPID!!!! I refused to just treat the symptoms now and realize we need to get her better. I contacted Dr. K again out in Chicago and he recommended another round of IVIG and at least 1 year of antibiotics to follow. I contacted my daughters neurologist the next day and he refused to do the IVIG and said that he would not go on another Dr.'s recommendation and has read lately that long term antibiotics do not help to ultimately cure PANDAS. I asked him what his recommendation was and he said, "Treat it symptomatically, if she needs antidepressants put her on antidepressants." Well, needless to say that did not sit well w/ my husband and I. I did speak w/ Dr. Trifiletti today and faxed him a bunch of info. and will be doing a phone conference w/ him on Friday and also have an appt. w/ an infectious disease Dr. next week. My questions are what has truely helped some of you who's children are better? Do any of you have any opinions of Dr. K and/or Dr. T? I have only heard good. Did any of you who went to see Dr. K in Chicago was it covered under insurance? was the IVIG? I have heard so much lately about kids who are completely better! Thank goodness because that is hope for all of us who's children are still sick! But what truely helped? I and Dr. K are concerned about my daughter because of her age (14) and because she has been sick for so long that we should try and get the IVIG done ASAP. I just want to do the right thing though. Any one who has advice or who feels they could help I would love to hear from you. Thanks, Debbie

I do not mean to sound stupid. I am new to this forum, but my daughter has been living w/ PANDAS for 10 years. I want to ask you, when you talk about Dr. T who are you speaking about? We are in a situation that we have spoken to Dr. K in Chicago, are seeing a local infectious disease Dr. here next week, and have also spoke w/ Dr. Trifiletti in Ramsey, NJ and I am wondering if that is who you are speaking about.

Only positive on the (IgG) This is the Mycoplasma IgM 0.57 (nl < 0.90). My dd also has trouble eating. I have to watcher her eat every bite to make sure she chews right. It scares the ###### out of me because she's already very thin. Will definitely keep you updated. Can't wait to hear from Dr. T and see what he wants her on for antibiotcs and start them. I hope this is the answer. Do you also have Dr. T? Angela