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14 yr. old daughter Pandas for 10 years! HELP!


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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 Completely withdrawn.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

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It does seem like your daughter had lingering issues from PANDAs. Was she on long term antibiotics after IVIG?

 

Our son has done 3 IVIG treatments with Dr. K, doing really well. Yes, some of our cost were covered by insurance after we met deductable. We expect our son to be on antibiotics for a minimum of a year but because we know he was exposed to RF, got sick and went untreated..... the recommendation is prophylactic antibiotics until 25 years of age.

 

I would definitely cut your loses and move onto a Dr. that deals with PANDAS on a regular basis. I highly recommend Dr. K based on our personal experience. He is very committed to helping these kids with a lot of experience.

 

-Wendy

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Hi Debbie,

 

I am exausted from reading your post. There is little doubt in my mind all the behaviors are connected and continued Pandas. I agree with SFmom. Dr. T., Dr. K, Dr. Latimer (Bethesda) are good choices. Getting on antibiotics seem to be a no brainer until this all gets teased out. As others have said, when treated appropriately with good follow up, these kids get better. You have had a long road that has had many turns, each one promising symptom relief and yet here you are. One of the symptoms that spoke with me was the mental changes. Many on this board found that when their kids came out of an exacerbation, the first thing to return was the clarity of their eyes and that distant look went away. When their brain is swollen, you get changes in their personality, anxiety, rage, difficulty processing cognitive thinking. My daughter was a little older when she had her first extreme pandas episode (but like your daughter had probably had for many years before but manageable symptoms). When she started getting better, the first thing I saw was the clarity in her eyes came back and that lost look was gone. My first chance for hope. Keep the faith. Get the best treatment you can from people who know Pandas. Get everybody in the house checked for strep with cultures and blood work if needed.

 

Good luck,

 

memom

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Okay...I admit I kind of scanned your post.

 

What is your dd's antibiotic history? I see a bunch of IVIG but no mention of antibiotics.

 

IMO your dd should try 1-2mo. of high dose augmentin xr (and if that doesn't do anything 1-2mo. of 500mg/day Azith.) before doing more IVIG. My theory is that IVIG isn't going to be that effective if strep is lurking somewhere in the body. This is what happened to worrieddad's son...he had several IVIG's (and low dose abs, prophylactic stuff). After several ivig's he started to make real progress when he added on high dose augmentin xr.

 

Also, when your dd had IVIG, what dose did she get?

 

I agree with memom about checking everyone for strep (including pandas dd). A neg throat culture doesn't 110% mean there is no strep hiding out elsewhere (like the sinuses) but it is a good/easy thing to check.

 

To do IVIG without prophylactic abs to follow is pretty pointless IMO. Even if IVIG "resets" the immune system, if strep is still lurking in your child's body (or if she gets a new strep infection) the wheels of pandas could be set in motion all over again.

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It does seem like your daughter had lingering issues from PANDAs. Was she on long term antibiotics after IVIG?

 

Our son has done 3 IVIG treatments with Dr. K, doing really well. Yes, some of our cost were covered by insurance after we met deductable. We expect our son to be on antibiotics for a minimum of a year but because we know he was exposed to RF, got sick and went untreated..... the recommendation is prophylactic antibiotics until 25 years of age.

 

I would definitely cut your loses and move onto a Dr. that deals with PANDAS on a regular basis. I highly recommend Dr. K based on our personal experience. He is very committed to helping these kids with a lot of experience.

 

-Wendy

 

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.

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Okay...I admit I kind of scanned your post.

 

What is your dd's antibiotic history? I see a bunch of IVIG but no mention of antibiotics.

 

IMO your dd should try 1-2mo. of high dose augmentin xr (and if that doesn't do anything 1-2mo. of 500mg/day Azith.) before doing more IVIG. My theory is that IVIG isn't going to be that effective if strep is lurking somewhere in the body. This is what happened to worrieddad's son...he had several IVIG's (and low dose abs, prophylactic stuff). After several ivig's he started to make real progress when he added on high dose augmentin xr.

 

Also, when your dd had IVIG, what dose did she get?

 

I agree with memom about checking everyone for strep (including pandas dd). A neg throat culture doesn't 110% mean there is no strep hiding out elsewhere (like the sinuses) but it is a good/easy thing to check.

 

To do IVIG without prophylactic abs to follow is pretty pointless IMO. Even if IVIG "resets" the immune system, if strep is still lurking in your child's body (or if she gets a new strep infection) the wheels of pandas could be set in motion all over again.

 

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.

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Hi Debbie,

 

I am exausted from reading your post. There is little doubt in my mind all the behaviors are connected and continued Pandas. I agree with SFmom. Dr. T., Dr. K, Dr. Latimer (Bethesda) are good choices. Getting on antibiotics seem to be a no brainer until this all gets teased out. As others have said, when treated appropriately with good follow up, these kids get better. You have had a long road that has had many turns, each one promising symptom relief and yet here you are. One of the symptoms that spoke with me was the mental changes. Many on this board found that when their kids came out of an exacerbation, the first thing to return was the clarity of their eyes and that distant look went away. When their brain is swollen, you get changes in their personality, anxiety, rage, difficulty processing cognitive thinking. My daughter was a little older when she had her first extreme pandas episode (but like your daughter had probably had for many years before but manageable symptoms). When she started getting better, the first thing I saw was the clarity in her eyes came back and that lost look was gone. My first chance for hope. Keep the faith. Get the best treatment you can from people who know Pandas. Get everybody in the house checked for strep with cultures and blood work if needed.

 

Good luck,

 

memom

 

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.

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With Augmentin XR you can do higher doses since with reg. augmentin you can be limited b/c you don't want too much clavulonic acid (there is less in xr).

 

Ughh. so 2 big reasons why IVIG didn't work for your dd

--lack of abs

--too low a dose of IVIG

 

sigh

 

How much does your dd weigh?

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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.

 

I absolutely agree with you!

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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.

 

I absolutely agree with you!

 

Yup...people are on long term abs for many reasons, not just acute rheumatic fever. I had a friend whose dd (young child) was on abs for years b/c of a bladder reflux problem. And another (elderly) who was on Azith. for a year for dental problems. But, if you mention long term abs for PANDAS (ya know, prevent and treat mental illness) suddenly abs are "dangerous" and "contraversial".

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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.

 

I absolutely agree with you!

 

Yup...people are on long term abs for many reasons, not just acute rheumatic fever. I had a friend whose dd (young child) was on abs for years b/c of a bladder reflux problem. And another (elderly) who was on Azith. for a year for dental problems. But, if you mention long term abs for PANDAS (ya know, prevent and treat mental illness) suddenly abs are "dangerous" and "contraversial".

 

If you were a cow, your whole life would likely be spent consuming antibiotics!

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To the point, I have United Healthcare, they did not cover Dr. K's office visit which was 350 but did cover IVIG after pre approval which takes 32 days unless its urgent then a mere 12 days! We are in the process of trying to get another IVIG approved for my 13 year old son. Third exaberation since September with breaks in between. Frankly I think its the same episode we're not fully rid of each time. Good Luck.

 

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

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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.

 

 

My son was on abx basically for 7 years. At the time we did not know about PANDAS, but knew that every time we took him off abx his sinus infections raged and his behavior became unmanageable. Some of the long term negative effects were an increase in yeast & fungus in his GI system and in his sinuses. Basically, the yeast and the "good" bacteria need to be in balance and when abx kill the bacteria, the yeast/ fungus is given free reign. Once we figured this out we had his tonsils out - which turned out to be the main source of the bacterioa. This decreased the need for abx, and then we spent a good bit of time with probiotics, antifungals, and dietary restrictions. Now, whenever he needs to go on abx we do acidophilus for the entire treatment time (and usually a couple of weeks after abx end), along with an antifungal mid-way through the abx treatment. So far, seems to work. My lesson: Abx are serous drugs and no one should go on abx without good reason. PANDAS is good reason. Best of luck to you!

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Hi Debbie, Sorry to hear your d has suffered so long with this too. I am contemplating moving to the next step of IVIG too. It scares me though. My S is 15 and has suffered for 6 years with this. Why does Dr. K think the IVIG should be ASAP?

 

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

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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.

 

 

 

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

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