Feeling helpless

[memom]

Aarg,

 

I have to mirror Alex's remarks. But first, get your ducks in a row and be sure a thorough workup is done with a Pandas specialist (the two mentioned are great). Make sure you and the physicians are convinced it is Pandas and that it is Strep related vs Mycoplasma and strep. Given her symptoms, it is reasonable to consider she may be dealing with more than one culprit. Even with IVIG as a goal, a month of the correct antibiotics and maybe even a steroid burst prior to doing IVIG may help it to work. Getting two experts opinions even if you have to pay out of pocket for those consults are more than worth their weight in gold. You will pay more in copays for therapy and medications/phychiatrist appointments and with no hope for recovery.

 

I want to briefly share my regrets with my now 17yo daughter. I followed the path you are being led down with Zoloft (and yes, the highest dose we got to was 250mg daily!!!! with no cure), therapy for a year and here I am, still without cure. The only thing that has helped was to get her tonsils pulled in August, daily antibiotics since October (6 weeks of Augmentin 500 twice daily followed by another 6 weeks of 875 twice daily, and now Zithromax 500mg daily for the past 8 weeks), two month long steroid trials one in October and the second ending about 2 weeks ago. She is now at about 75-80% better. Now, after loosing almost 2 years of her life, we are finally hoping to hone in on IVIG, and you can bet if we do it it will be the high dose, not monthly low dose. I am so tired of defining my life as a parent struggling with 2 of my 3 kids with years of mental health and mental processing struggles that I would sell my soul for cure. I have tried gluten free, vitamins, methylation, you name it. No help. I too am not normally a drug pusher, but have been dealing with this for so many years, it is miserable. My poor son has missed two years of what should have been college years being disabled with mental processing and rage/anxiety and depression. All due to Strep and now we think possibly Mycoplasma. For the first time in 4 years, I am getting my son back after simply 6 weeks of antibiotics and 5 day steriod burst when 5 SSRI's, two Psychiatrists, two Psychologists and 4 years of his life lost. If i knew what I know now, I would have done things very differently. With these older kids, time is not on your side to wait it out.

 

Good luck,

 

memom

[reactive]

Wow, Alex so glad you said it....... IVIG is really no big deal. Our son is doing great. Age and length of illness can have an impact and some kids need more than one IVIG treatment BUT they do get better. Dr. K has treated our son and he is extremely knowledgeable in PANDAS with a lot of documented successes.

 

-W

Since we are on this topic; does anyone know...I know legnth of illness can impact success of IVIG and that worries me as my son has had symptoms for five years, possibly longer. But, my real question is, do kids with more "mild" symptoms get better sooner with IVIG vs those who are severe? I'm hoping that may be the case as my ds9 is mild currently, we could probably swing one IVIG but could not afford more. Is there any info on that?

[dut]

I'm still vacillating wildly, even as I type, between whether I want to respond to this or not but here goes.... I don't agree that IVIG is the only cure.

 

I don't believe there is a cure per se. I think that most kids outgrow this as (?) they reach puberty/the BBB matures/they get exposed less/the thymus atrophies who knows. (For some it remains throughout life. We have some adult posters on here who still get flares.)

 

Thing is we've got to get them to that point with as little damage as possible in terms of lost time, lost childhood, lost education and hangover behaviours.

 

Dr T explained it to me as some kids are further down the "poked immune system road" than others. Some really can do ok on abx, some need low level immune suppression such as steroids and some need the big guns IVIG/plasmapherisis/PEX.

 

Even after successful IVIG, these kids still need to be kept free of strep by abx and yes many will need IVIG, especially those who have had it longer, I believe.

 

We, I guess, were lucky. Although, in hindsight, our dd6 had shown signs since about 3, she had an obvious, fairly classic, onset at 4.5 and was treated quickly/effectively with abx. She has since had 1 major epsiode that didn't respond to abx but resolved in 2-3 months and her last flare was sat on completely by abx and steroids.

 

She is symptom free, to my mind, in between epsiodes. In the 2 years since we have been aware of this, she has been ill for about 6 months. I feel had we known of the treatment effect of steroids earlier, those 6 months would be down to maybe 1 month ( but who knows as each time can be so different).

 

I would absolutely do IVIG, if our dd didn't remit between episodes or if we couldn't shorten episodes with abx or steroids. For us they work and my hope is that as this disorder becomes better known, then those children and families facing it will get earlier recognition and treatment. And this, hopefully, will mean that the treatments can be less invasive.

 

I'm just not sure we can or should be saying to pparents new to this that there is a cure. Yes, absolutely,we should expect 100% symptom free but with the rider it can return. Maybe there are things that can be done to turn around the autoimmunity but I'm not sure we're fully there yet in terms of treatment for that.

 

And I'm not sure we can say IVIG is the only way. Especially to parents of kids who are having their 1st episodes. They could possibly be managed with aggressive abx or steroids. I know how panicked I was when we first realised what we were dealing with. If I had been told IVIG was the only way, I would have done it. I wouldn't now, as currently, I don't believe we need it and am glad we didn't go that route. Equally, I realise we may need to in the future, just not now and hopefully, never.

 

I do agree that parents need to get to a good PANDAS dr straight away, though, and not mess with local drs unless you have an exceptional one, who knows their PANDAS stuff.

 

God.. what a rant... sorry... must have triggered me in some way, my bad

[reactive]

I'm still vacillating wildly, even as I type, between whether I want to respond to this or not but here goes.... I don't agree that IVIG is the only cure.

 

I don't believe there is a cure per se. I think that most kids outgrow this as (?) they reach puberty/the BBB matures/they get exposed less/the thymus atrophies who knows. (For some it remains throughout life. We have some adult posters on here who still get flares.)

 

Thing is we've got to get them to that point with as little damage as possible in terms of lost time, lost childhood, lost education and hangover behaviours.

 

Dr T explained it to me as some kids are further down the "poked immune system road" than others. Some really can do ok on abx, some need low level immune suppression such as steroids and some need the big guns IVIG/plasmapherisis/PEX.

 

Even after successful IVIG, these kids still need to be kept free of strep by abx and yes many will need IVIG, especially those who have had it longer, I believe.

 

We, I guess, were lucky. Although, in hindsight, our dd6 had shown signs since about 3, she had an obvious, fairly classic, onset at 4.5 and was treated quickly/effectively with abx. She has since had 1 major epsiode that didn't respond to abx but resolved in 2-3 months and her last flare was sat on completely by abx and steroids.

 

She is symptom free, to my mind, in between epsiodes. In the 2 years since we have been aware of this, she has been ill for about 6 months. I feel had we known of the treatment effect of steroids earlier, those 6 months would be down to maybe 1 month ( but who knows as each time can be so different).

 

I would absolutely do IVIG, if our dd didn't remit between episodes or if we couldn't shorten episodes with abx or steroids. For us they work and my hope is that as this disorder becomes better known, then those children and families facing it will get earlier recognition and treatment. And this, hopefully, will mean that the treatments can be less invasive.

 

I'm just not sure we can or should be saying to pparents new to this that there is a cure. Yes, absolutely,we should expect 100% symptom free but with the rider it can return. Maybe there are things that can be done to turn around the autoimmunity but I'm not sure we're fully there yet in terms of treatment for that.

 

And I'm not sure we can say IVIG is the only way. Especially to parents of kids who are having their 1st episodes. They could possibly be managed with aggressive abx or steroids. I know how panicked I was when we first realised what we were dealing with. If I had been told IVIG was the only way, I would have done it. I wouldn't now, as currently, I don't believe we need it and am glad we didn't go that route. Equally, I realise we may need to in the future, just not now and hopefully, never.

 

I do agree that parents need to get to a good PANDAS dr straight away, though, and not mess with local drs unless you have an exceptional one, who knows their PANDAS stuff.

 

God.. what a rant... sorry... must have triggered me in some way, my bad

I posted on another part in this thread also, and that is what is hard for us as our DS9 is so mild compared to some of these other kids...if we did IVIG once and that would be it, I would do it no problem...but if our son reacts to some viruses too and we think he might, antibiotics after IVIG won't help that...so I am afraid of doing IVIG; which we would have to pay for ourselves, and he would do better but have a relapse from virsuses.

 

I'm getting ahead of myself here as ds had immuno workup drawn last Thurs and I don't even have those results yet. But immuno doc does not think we will find anything in the labs...

[dut]

reactive - yeh, I believe that my dd is in a different place to many on here but not all.

 

When our dd is bad, she is bad. 1st episode was sudden onset moderate/severe OCD/tics/chorieform movements and a host of behavioural stuff but she really does remit fully in between epsiodes. I'm not saying I wouldn't do IVIG if needed, I'm just not sure all kids need it or if we will need it. For me, it wouldn't be severity that would make my mind up, unless it was so low level. Our dd knows when she is getting it and is super aware and even at low levels it totally interferes with her relationships and with learning and she is just miserable ( in addition to 2 major we have had a couple of low flares that no one else would notice but she does and we do.)

 

For me it would be if she can remit in between. For our dd, it would seem that abx and time will do the trick. So if we can keep her trigger free with abx and then if she does have breakthroughs, treat with steroids, then for us we don't need to move on o stronger immuno suppressives. And yes, that might change but if we need to do IVIG I want to keep that option for when we really need it 'cos insurance will only probably pay for so many (for us) and we could only afford so many treatments if we had to pay. Also, she is so young and there's many a slip twixt cup and mouth. Our dd is 6 and our possible PANDAS son only 2. We could do IVIG on both and find ourselves hit by strep a couple of times per year for the next decade and need to repeat and repeat..

 

maybe my understanding of IVIG is faulty and the risk associated with strep exposure falls after a while , dunno... anyway i'm ranting again ..sorry

[thereishope]

If it means anything, my son had strep triggered PANDAS 3 times. All 3 times, he remitted with just antibiotics. Honestly, I know if I had gone to DrK in his second or third exacerbation, I probably would have been told he needed IVIG because of the severity and the timeline in recovery. Not that I actually had a consult with him, but from following everyone else stories, I probably would have been told that. I have mainly been through those 3 journies w/o this forum or any support. it's intersting to think how things might be been approached different if I had visited this site earlier on.

 

Anyway, like I said, my son has had strep triggered exacerbations 3 times and he is doing well now. No PANDAS symptoms. He has been strep free (knock on wood) since March 2009. All PANDAS symptoms and residual OCD gone since Aug 2009. So even though I do have a lot of respect for Dr K, my son is proof that abx alone can work. However...I don't say he's cured. he's in remission. I do not think anyone can be cured.

 

Side info...my son was 5 at age of onset. We realized he had strep about 2 1/2 weeks after sudden onset. We caught the strep in excaerbation #2 and #3 within a day of sudden onset. So I realize we caught we caught it fast every time.

 

I really believe each child is different. There is no set rule or set treatment. What works for one may not work for another. A lot is following your parental instinct and just hoping and praying for the best.

 

I think it's important for those who cannot ever afford IVIG to know there is hope and for those who would rather not to do IVIG (for whatever reason) to know some kids do get better w/o it.

[sf_mom]

Dr. K can give you better statics with regards to age and length of illness. Although, I think he is starting to treat older children past puberty with success. Unfortunately, these older children are still in the recovery process so a little hard to say if its only one treatment, two treatments, etc.

 

-Wendy

 

 

Wow, Alex so glad you said it....... IVIG is really no big deal. Our son is doing great. Age and length of illness can have an impact and some kids need more than one IVIG treatment BUT they do get better. Dr. K has treated our son and he is extremely knowledgeable in PANDAS with a lot of documented successes.

 

-W

Since we are on this topic; does anyone know...I know legnth of illness can impact success of IVIG and that worries me as my son has had symptoms for five years, possibly longer. But, my real question is, do kids with more "mild" symptoms get better sooner with IVIG vs those who are severe? I'm hoping that may be the case as my ds9 is mild currently, we could probably swing one IVIG but could not afford more. Is there any info on that?

[momaine]

Hey all, We are fairly new to PANDAS Syndrome. My 15yo daughter was diagnosed in December, right before christmas. we honestly thought she was having a breakdown with the very bizarre thoughts she was having. We took her to the ER, they recommended her going to a mental health facility for three day observation. (that was a horrible experince in itself) She was put on Zoloft, Risperdal, and Penicillin. On the last day she was diagnosed with Pandas, and was released. They made appointments for Sleep deprivation EEG, and MRI. gave us a pediatricians name who was familiar with pandas (but has never seen or treated it)and we were sent on our way. Well, we still haven't heard about the EEG or MRI, she has been taken off the Penicillin after a month. We have seen a psychologist, who is very nice but has never heard of pandas. She has been taught coping skills, but the OCD's seem so overwhelming sometimes, that they don't help.

 

My daughters seperation anxiety is getting worse, she cries in the morning when she has to go to school and I have had to literally pull her off me a sometimes, night time she cries because she doesn't want to go to bed and be alone. Must be around me at all times and if shes not she worries something will happen to me. Being social at school is non existent, she has no desire to talk to her friends and doesn't want anyone in her "bubble" Joint pain, can't sleep, ear aches that have been going on for months, mood swings. depression,

 

Took her back to the pediatrician, who always just checks her breathing, ears and wants to up her zoloft. She now thinks that its more than Pandas. ????? We finally found a psychologist in Atlanta but he doesn't take insurance, the pediatrician wanted his number and called him. now my daughter is on Clonidine to help her sleep.

 

I'm so frustrated at this point. If it wasn't for this website I would totally be in the dark about what this dreaded syndrome is even about. We can't afford to take her to the Dr in atlanta. I'm tired of trying to educate everyone with the little that I know. Its taking its toll on the whole family. Does anyone out there have any advice or anything? Any vitamin supplements that might help? I have read through alot of the information that is posted and honestly can't really understand some of it but I geuss thats because I haven't been through as much as some of you and my daughters symptoms aren't as severe as some of your situations.

If nothing else thanks for listening and letting me be heard!

Where are you located?

[aaarrrgh]

Hey all, We are fairly new to PANDAS Syndrome. My 15yo daughter was diagnosed in December, right before christmas. we honestly thought she was having a breakdown with the very bizarre thoughts she was having. We took her to the ER, they recommended her going to a mental health facility for three day observation. (that was a horrible experince in itself) She was put on Zoloft, Risperdal, and Penicillin. On the last day she was diagnosed with Pandas, and was released. They made appointments for Sleep deprivation EEG, and MRI. gave us a pediatricians name who was familiar with pandas (but has never seen or treated it)and we were sent on our way. Well, we still haven't heard about the EEG or MRI, she has been taken off the Penicillin after a month. We have seen a psychologist, who is very nice but has never heard of pandas. She has been taught coping skills, but the OCD's seem so overwhelming sometimes, that they don't help.

 

My daughters seperation anxiety is getting worse, she cries in the morning when she has to go to school and I have had to literally pull her off me a sometimes, night time she cries because she doesn't want to go to bed and be alone. Must be around me at all times and if shes not she worries something will happen to me. Being social at school is non existent, she has no desire to talk to her friends and doesn't want anyone in her "bubble" Joint pain, can't sleep, ear aches that have been going on for months, mood swings. depression,

 

Took her back to the pediatrician, who always just checks her breathing, ears and wants to up her zoloft. She now thinks that its more than Pandas. ????? We finally found a psychologist in Atlanta but he doesn't take insurance, the pediatrician wanted his number and called him. now my daughter is on Clonidine to help her sleep.

 

I'm so frustrated at this point. If it wasn't for this website I would totally be in the dark about what this dreaded syndrome is even about. We can't afford to take her to the Dr in atlanta. I'm tired of trying to educate everyone with the little that I know. Its taking its toll on the whole family. Does anyone out there have any advice or anything? Any vitamin supplements that might help? I have read through alot of the information that is posted and honestly can't really understand some of it but I geuss thats because I haven't been through as much as some of you and my daughters symptoms aren't as severe as some of your situations.

If nothing else thanks for listening and letting me be heard!

Where are you located?

I am in NW Georgia.

[pixiesdaddy]

You asked about IVIG and other's experience with it. Here's ours.

 

We have a 9 year old daughter. She was diagnosed at age 9 with PANDAS, but we believe she has had it for at least 4-5 years. We saw Dr. K as we live relatively locally to him.

 

After a 10-day steroid burst alleviated her symptoms, he diagnosed PANDAS and recommended IVIG.

 

It was expensive ($10,000) and insurance has yet to cover it, though we are fighting with them.

 

However, we have seen such benefit from it that we never question our choice to do it. Many of our DD's symptoms disappeared very rapidly after IVIG and have yet to come back, though of course we know they can.

 

IVIG stands for intra-venous immunoglobulins. It's an IV treatment over a two day period of time. It took 5-6 hours each day for the treatment. Basically, our DD was hooked onto an IV the entire time and that was it. There was no pain associated with the treatment other than the insertion of the IV and the boredom of sitting around.

 

She did have extremely bad nausea and headaches (actually requiring an ER visit) after our IVIG but was much better by the following morning.

 

If you have more specific questions, feel free to ask and I'll share more of our experience.

Pixiesdaddy

[dabel]

My son is 12 1/2 yo. He has had this since about age two but went undiagnosed and misdiagnosed until this past October. We saw Dr.K and decided to do IVIG ASAP due to my child's age and the progression of the disease. He hit puberty early and we saw NO signs of this going away permanantly (symptoms did wax and wane over the years - this is typical with PANDAS). He had IVIG the beginning of December and the change is amazing! This was my childs's only shot at a happy and productive life! Dr.K explained that the length of illness does not appear to affect the recovery. My child had this a long time and was very severe. His age concerned both Dr.K and myself but so far so good! With your daughter being 15 yo I would recommend that you address this soon as time is against her if she does indeed need IVIG.

[aaarrrgh]

Thank you all so much for all the support, and everything. I got a responsse from Dr T. we are going to have a phone consultation and said he would be willing to be my daughters doctor, getting tests done, etc. While I'm not ruling out IVIG just yet, I have to look at all the options. I know that with her age, we can't wait and need to do something ASAP as her symptoms seem to get worse on a daily basis. I am feeling a little less helpless now and its all thanks to you all and this wonderful site. I don't know where I would be without it at this point. I will continue to update you all on what happens. If your reading this as a new member looking for answers, don't give up!! Your in the right place and while opinions may vary here, there is hope!!! I feel like I have gotten my second wind and while yes, I still cry at the drop of a hat sometimes, I'm coming out swinging!!

[momaine]

You asked about IVIG and other's experience with it. Here's ours.

 

We have a 9 year old daughter. She was diagnosed at age 9 with PANDAS, but we believe she has had it for at least 4-5 years. We saw Dr. K as we live relatively locally to him.

 

After a 10-day steroid burst alleviated her symptoms, he diagnosed PANDAS and recommended IVIG.

 

It was expensive ($10,000) and insurance has yet to cover it, though we are fighting with them.

 

However, we have seen such benefit from it that we never question our choice to do it. Many of our DD's symptoms disappeared very rapidly after IVIG and have yet to come back, though of course we know they can.

 

IVIG stands for intra-venous immunoglobulins. It's an IV treatment over a two day period of time. It took 5-6 hours each day for the treatment. Basically, our DD was hooked onto an IV the entire time and that was it. There was no pain associated with the treatment other than the insertion of the IV and the boredom of sitting around.

 

She did have extremely bad nausea and headaches (actually requiring an ER visit) after our IVIG but was much better by the following morning.

 

If you have more specific questions, feel free to ask and I'll share more of our experience.

Pixiesdaddy

how long has it been since she had the IVIG?

[Kayanne]

First, I want to say welcome, and that I am sorry you are going through this.

 

I think Alex is absolutely right when he says that most of the parents on this forum are still struggling to help their PANDAS children, and therefore, you cannot make an accurate assessment of outcomes based on reading this forum.

 

Once in a while we do hear from parents whose children are doing well.

 

I also agree that most children with this have suffered TOO LONG to just get well with antibiotics.

 

However, I do think that some children (probably the minority) do not need to go right for IVIG or plasmaspheresis. Dr. K has tons of experience treating this with IVIG, and he has gotten his current protocol for children under puberty pretty well established.

 

My daughter's PANDAS episode last year consisted of severe OCD that shut her down...no talking, no writing, standing still in the school yard. Over a few weeks, she went from a successful, thriving kindergartner to a child that couldn't do anything without intervention from an adult. Had she been 2 years old and not 6 years old, I believe we would have been looking at an autism diagnosis.

 

Dr. L treated my daughter with a longer course of prednisone. At the end of the month, she only seemed to be about 70% improved, and then with only three doses left, she seemed to come back alive overnight! She has had minor allergies, a few colds, the flu and one dose of the the H1N1 vaccine WITHOUT any uptick in PANDAS symptoms...because I believe that this was caught early, and that her immune system was not able to get too messed up.

 

We have had some strep in the house that last few weeks, and we have seen some very minor symptoms return....but the school continues to report that they are not seeing anything unusual. From reading other people's accounts, even her uptick with THREE of my children positive for strep is much less severe than the uptick described from parents whose children did recieve IVIG, when their classmates or playmates (more casual exposure) had strep.

 

I do not think it is unreasonable (In fact I think it is more ethical) to try an intermediate treatment such as a steroid for cases caught early, and that seem to be more mild. If the response from a treatment (not a 5 day diagnostic) dose of a steroid is not really good, then the child should definitely be moved on to more aggressive treatments such as IVIG or Plasmapheresis. However, I think that it is up to the doctor to determine where a child fits in the severity and length of time...certainly not something that we parents can speculate about on a forum.

 

ALL treatment options should be on the table.

 

I would highly recommend that you listen to the following three interviews of Dr. K., Dr. L and Dr. T. It will give you an idea of their treatment ideas.

 

God Bless ALL of these doctors for going to bat for our kids!

 

~Karen

 

January 10, 2010

PANDAS and PITAND: The medical basis for behavioral symptoms with Dr. Miroslav Kovacevic:

 

http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934

 

February 9, 2010

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS) - A Clinical View and Treatment Options with Dr. Latimer and Laura Matheos:

 

http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44414

 

February 16, 2010

Not so Black and White: The Many Faces of PANDAS with Dr. Rosario Trifiletti and Lynn Johnson:

 

http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44551