JoyBop

Well we got our culture results and there were many gram positive anaerobic bacteria found. The dr said it was consistent with strep. We are beyond thrilled that she is 100% cured and are praying that it holds.
 
Just thought you would all be I retested in hearing some hopeful news...

Bridget it s so worth it! Yes the recovery is awful but even while in terrible pain I saw the twinkle in her eye and knew she was back. The thig you will want to ask is if the dr will culture the tonsils to see what infections may have been hiding. The second is medications. Much has changed recently when it comes to post tonsillectomy pain. They no longer give codeine as several children have died from it. The only med other than Tylenol(which does nothing!!) is oxycodone but it is risky for anyone with central sleep apnea so you will want to discuss the pain plan. They also give pain meds during surgery and you will want to kmow about those as well, even though the child will be itubabated.
 
We participated in a sleep study at mass eye and ear. We were given a mystery medicine post op which was either Motrin or Tylenol. It could only be given every 6 hours and was a study not on pain management but bleeding post to sillectomy. These docs believe Motrin is as safe as Tylenol. I can tell you I think we had the Tylenol because the pain was horrendous. She could have had Tylenol every 4 hours but the study only allowed for every 6. As soon as the 8 th day passed and the study was over I gave her Motrin and she slept through the night for the first time. Thank goodness for the oxycodone which we reserved for the wee hours of the night when she woke thrashing in pain and med time was hours away.
 
I also recommend you stay over night off they will allow. Its a horrendous night and its a godsend to have iv fluids as they can not swallow a thing that first night or so.
 
My DS was a trooper and we are so happy to have her sweet self back. It was worth it even if it doesn't last. at least we know that no matter how bad either of our kids may get, this has proven to us that they are still there and WILL get better. There is always that fear in all of us that we may have seen the last of who we once knew. Now I can put that fear to rest, celebrate the good days and get through the bad.

I think there are many different kinds of seizures. Have a look at this and see if anything rings a bell. My son has temporal lobe seizures which are considered partial complex seizures. Read here. http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy
I would never have thought to even google the symptoms, they are so strange. But fortunately for me a doctor saw him have one on Sunday and explained what was going on.

I think my son was tested for thyroid and it was normal but not Dd. its very rare for kid to have thyroid problems but they do happen. Dd is now in full remission. We will be testing again in nov. I'm having my adrenal glands tested as well for some new symptoms I'm having. Interestingly low adrenal causes anxiety and depression....worth checking in the kiddos. I don't have those symptoms but have some funky things going on.

We see all the docs at MGH and they are beyond fabulous!! We had the work up with the immunologist and she did a brilliant job. My child had a positive ANA (speckled). This is a non specific finding and is nothing to worry about. The NIH noted to me that up to half of all of their pandas cases are testing positive to the ANA but it is not something to worry about. You will most likely have to repeat the bloodwork when you go back to see the immunologist. Try not to worry, especially if your child seems to remain healthy most of the time. My child has low white blood cells and neutrophils which should also make him susceptible to illness yet he is almost never sick. You are in great hands!

I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough.
 
I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place.
 
It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live.
 
Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.

I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough.
 
I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place.
 
It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live.
 
Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.

I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough.
 
I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place.
 
It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live.
 
Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.

I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough.
 
I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place.
 
It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live.
 
Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.

You should call your insurance co and ask about coverage for IVIG, but be certain not to mention PANDAS. many insurance company's outlaw this procedure with any mention if it. Ask them to email you their policy for IVIG coverage. You don't have to tell them anymore than your physician mentioned that your child might be needing it. You don't want to give them any red flags.
Do you have an HMO or PPO? Did bc cover your visits to dr t? If you have an HMO you are stuck in your network unless you can win an appeal. If you have a PPO you may be in luck, but again, it all depends in your plan. Another question for your insurance co. Do I have coverage with a participating doc in NJ? If dr t is not and he does it at his office or surgical center it may not be covered. Its very complicated.
The risk in having your ped order it without knowing everything I'm suggesting you know upfront, you may be banned from the IVIG when they hear about pandas. Every plan if different and some DO cover it. You want to know that before your dr goes for a pre auth. I work in a dr office and deal with these issues a lot, but every state is different.
Where I live, insurance plans specifically exclude pans/pandas and any experimental treatment with IVIG. My plan goes so far as to exclude anything post infectious. (Encephilitis). If your company allows coverage for post infectious encephalitis that may be the way to go. If not, your doc will have to be a little more creative.
Some have no problem getting coverage but for most of us this isn't the case
 
I have heard the code for autoimmune encephalitis of an unknown cause with mental status changes has been successful for some.
 
Bottom line: get the coverage policy, it might even be listed online. Google it for your specific plan.
Find out if you can have a non emergent procedure out if state. Find out the facility it would be done at with either doc. If you find that it had to be done by your ped, have him email or call dr t to get advise on how to bill. I'm sure he's the master!!
If you have any specific questions pertaining to insurance feel free to ask.

I hunk it's encouraging that the numbers are going down. However the antibodies are still high. The way I see it, it's those antibodies that are wreaking havoc, so it makes sense you are still seeing a flare. Time and patience, you will get there. It sounds like you are doing everything right and the numbers are coming down.

I know what you mean about the Pandas anxiety. Maybe they will come up with a new "Stress anxiety disorders for adults....induced by Pandas children" Ha...On a serious note, what has helped me a lot after my ds has recovered from a flare and doing well is accepting the reality that he will have another flare. I have no control, or not a lot over that...It helps me to enjoy one day at a time and reduces the pins and needles feeling of "oh oh..is it staring again?" Living like that is horrible. I tell myself, yes, he is going to have another flare someday, and we got through the last one, we will get through another one.....It's all I have to hang my hat on at this point....

We were at the NIH participating in a PANDAS study. It was the most wonderful experience and I'm so glad we went. My son was not in a flare and was able to participated in all of the procedures, and even enjoy himself. This particular study was about sleep in PANDAS patients, and was limited to 15 patients. DS was number 14 and the final patient has already been selected.
 
Basically DS had all of the same tests and procedures that the IVIG study participants had done, with the exception of the IVIG of course, and the addition of the sleep study. My maternal blood was also taken, with my consent, for use in future studies.
 
I asked if they wanted me to spread the word, or keep it under my hat, since there isnt any recruitment calls out there. They said that the sleep study was complete, but there is what they are calling the Natural History study that is PANDAS specific. They are also including autism and other neuropsychiatric disorders within this study, but they are obviously very interested in PANDAS.
 
If anyone is interested you should contact Swedo office. You should know that anyone who has had IV Ig may be excluded, from what I understand. The study has a very high number of patients that it can accommodate (unlimited if you consider the number of patients that actually know they have it!) you should also know that the cost of travel and meals are not covered, and no compensation is available.
 
We had the most positive experience and my son was treated like a rock star and never wanted to go home. We were able to stay at the Children's Inn Which was a little like being in Disney. Words can not describe how special, loved, and accepted this made my child feel.
 
We had hours of time with all of the doctors involved and I got to ask them questions and get their opinions on everything. The results of our particular tests will be mailed to us in a week or so and I look forward to learning even more. At the end of our intake conference, dr. Swedo herself told me my son has PANDAS Plus. I'm not sure what the plus meant and I forgot to ask, but I should be hearing from them soon as my question was forwarded to her. My son has had autoimmune radiated GI problems and I'm guessing she was referring to the bigger picture of his immune system.
 
It was a fantastic experience for him, and for that alone it was all worthwhile. For me, it was amazing to speak with these doctors personally, Get validation that my child has PANDAS ( no surprise but still great to hear) and get their personal recommendations for my child's treatment.
 
Feel free to ask any questions.

Please add Joybop DS and DD. what a great idea!

I am sorry Joybop....what you have experienced is just so wrong.

Q, very wisely and eloquently said!!! Its true, that that doesn't kill us makes us stronger. I think if the amazing and inspirational people I have met on this journey. I have learned not to take life's little moments for granted, and I have had to relearn the virtue of patience again and again...and again. I think we will be a much stronger and closer family for all that we are going through. Would I have ever asked for PANDAS? No way! we don't get to choose what happens in life, but we do get to choose how we handle it. If our children see us wallowing in misery asking why us? Hiw do we expect them to learn perseverance, faith and strength? There are plenty times I get depressed and frustrated and angry. But eventually I realize that I love my children for who they are and know that this disorder does not define them. And then I think to myself of all the children who have in curable cancers and diseases that will take their lives. We Re actually very lucky!!

Time for a new therapist !

Wow! That was interesting! We actually just enrolled in a new study at the NIH. We are going in early January for two full days of testing. It does not include treatment but its intent is diagnostic and includes natural history of childhood onset of OCD. I had responded to the family study but found out that that particular study is not yet enrolling. We feel very fortunate to have this experience.

I didn't get to read the while study but I'm not buying it. Who's to say those are the antibodies that are even causing the damage? Read this by Dritan Agillou. He's the scientist who has proven what cells are crossing the BBB and how they get there. If you scroll down you'll get to the part about pandas. His research is currently undergoing peer review and will hopefully be published within the next 6 months. It should change everything! A and by the way, its TH17 cells that are infiltrating the BBB.
 
http://devcell.bio.uci.edu/faculty/dritan-agalliu/

I didn't get to read the while study but I'm not buying it. Who's to say those are the antibodies that are even causing the damage? Read this by Dritan Agillou. He's the scientist who has proven what cells are crossing the BBB and how they get there. If you scroll down you'll get to the part about pandas. His research is currently undergoing peer review and will hopefully be published within the next 6 months. It should change everything! A and by the way, its TH17 cells that are infiltrating the BBB.
 
http://devcell.bio.uci.edu/faculty/dritan-agalliu/

Have you done another rapid strep test? Certainly your doc is willing to do that. It took 30 days of abx to wipe out infection. Also, there is a wax/wane pattern that emerges as kids are healing. One day good, one day bad, one day with 2 hours symptoms, etc...What you should see though is a continued progressive movement forward during the healing phase which can last several weeks to fully recover. If your child is less then 70% consistently better, then I would say more rounds of abx. The roller coaster ride of two steps forward, one step back is in my opinion the hardest part of this disorder to get used to. Get the rapid strep for sure.

I can appreciate how hard this a as been for your family. I just wanted to say, wow! Your child has had two IV IGs. That is very impressive! That's a feat many if us here in the US are trying relentlessly to do. You have done amazingly well with your resources and I find your story very inspirational. I also wanted to say, enjoy and celebrate every day that your child is well. Maybe the tics won't come back. If they do, we all know you will come back fighting for the next treatment or direction. But give it a chance. Maybe he will begin on a path to healing. I also thought llms suggestion on the book was a fabulous one.

Is this Dr. N at NYU? If so, I would personally be willing to try anything he says, and then if it goes awry you still have a very valuable piece of information. I dont know him personally but it sounds like he is absolutely amazing at figuring these very difficult cases out. I myself have had to try some things that have been outside of my comfort zone like trying medications that I never thought I would give to an 8 year old child. Some have been beyond amazing and some not so much. But you will never know until you try. They are all short lived, but the information gained is permanent.
You make the final decision...Best of luck!

There are studies proving that Amox is no longer effective in many people. Does someone have the study handy? I know my ID doc told me that many people now make an enzyme that counteracts the Amox and that is why it may work in a petri dish but not in the body. There are also many known resistant strains to Amox.
IF you could come up with the studies perhaps your doc would be willing to trail your child on a different abx and for a longer period of time.
 
Before we realized my DD had PANDAS and an active strep infection (her behaviors were out of control but we chalked it up to toddlerhood) she incidentally had a few ear infections. She was given a 10 days course of Amox but nothing much changed. 10 days later her other ear became infected and she was given a longer course of Azith. Magically, her behavioral symptoms greatly improved, however we credited a psychologist for the miraculous improvement. We realized several months later that both of our kids had PANDAS and have been on abx ever since. But it was hindsight that we realized it was that second round of abx that helped and that the Amox was not effective.

This should clear things up with titers.....http://www.latitudes...?showtopic=3756