Here Goes... My son's Cam Kinase Results came in

[momtocole1]

Dear Faith, (and the rest of the forum),

Our two boys must have been in the same batch that Kathy Alvarez ran late yesterday at University of OK. My son's number was 165. I was happy to know that I'm not crazy that these symptoms are real, but sad to get the confirmation and realize that my son has suffered with this for so long.

 

I am in the same boat as Faith somewhat, though my son is 1 1/2 years older He will turn 12 in Novemer, and his OCD is much worse. I too am angry that he has suffered with this for so long. We just ordered copies of all his medical records and realized the first strep infection was when he was in 1st grade. I still know the date, 4/23/03. I will never forget his first grade teacher meeting me at the door one day and asking me if Ryan had Tourette's sydrome. I almost screamed. I had never even imagined that could be the case. He just had this one tic that came up overnight that was like a grunting sound, things were never the same again. He used to be so good at math and now he is so afraid of the letter X that he can't even do one math problem right now. He used to write long stories, by hand, I would find little books that he made all over the house and now he can barely lift a pencil.

 

I am also angry that my son and our whole family have suffered for almost 6 years with this horrible disorder. We took him to every doctor under the sun, he was diagnosed with Anxiety, OCD, PDD-NOS, Asperger's, High-Functioning Autism, Bipolar, you name it.

 

I am so sad that this has torn my family apart. We have to do everything separate because most of the time my son is too afraid to go to new places. It just broke my heart the other night again... I took my daughter to a magic show on Monday night at school and my son really wanted to try to go. I went to go get him and he just cried and cried and said that he really wanted to go but something told him that if he did his head would be smashed on the ground. ;)

I left him with my husband and pulled out of the driveway with tears in my eyes again. I don't even bother wearing eyeliner any more because I cry almost every day. I try to joke about this, just like some of the other Mom's here. It just helps me get through it somehow. We all know there is nothing funny about this, but if we don't try to make eachother laugh once in a while we will fold up and just give up I think.

 

I am also very, very angry at the "world renowned" pediatric neurologist that I saw at University of California Irvine that looked me in the eye when I begged him to treat my son for PANDAS 4 years ago and he told me "Oh I don't believe in that PANDAS stuff". He said he has high-functioning autism. Just hire a behaviorist.

 

I am sad that my son has not been able to hold onto a friend, that he is so sensitive and gets hurt or angry at the flip of a switch which alienates other children that just don't understand what is "wrong" with him.

 

I am sad that my father-in-law and mother-in-law came into my home and told my husband I that we better start being really tough on my son quick or that he would end up in jail someday. They wanted us to physically hurt him, MAKE him behave.

 

But what I am the saddest about is that my son has lost years of his development and I don't know how to get that back.

 

Okay, enough mad and sad stuff. We have an appt. next week with an immunologist and a phone consult with Dr. K. coming and I am hoping and praying that my son can get IVIG and that our insurance will pay for it.

 

I have the same worries that Faith does. Is it too late. My son has not "gone through" puberty yet completely, but it is starting. I feel like I am in a race against time. I am hopeful because he has gotten better in many ways with the high dose augmentin, but we have a lot of healing to do.

 

Thanks for listening to me vent...

 

Judy...

[dabel]

Dear Faith, (and the rest of the forum),

Our two boys must have been in the same batch that Kathy Alvarez ran late yesterday at University of OK. My son's number was 165. I was happy to know that I'm not crazy that these symptoms are real, but sad to get the confirmation and realize that my son has suffered with this for so long.

 

I am in the same boat as Faith somewhat, though my son is 1 1/2 years older He will turn 12 in Novemer, and his OCD is much worse. I too am angry that he has suffered with this for so long. We just ordered copies of all his medical records and realized the first strep infection was when he was in 1st grade. I still know the date, 4/23/03. I will never forget his first grade teacher meeting me at the door one day and asking me if Ryan had Tourette's sydrome. I almost screamed. I had never even imagined that could be the case. He just had this one tic that came up overnight that was like a grunting sound, things were never the same again. He used to be so good at math and now he is so afraid of the letter X that he can't even do one math problem right now. He used to write long stories, by hand, I would find little books that he made all over the house and now he can barely lift a pencil.

 

I am also angry that my son and our whole family have suffered for almost 6 years with this horrible disorder. We took him to every doctor under the sun, he was diagnosed with Anxiety, OCD, PDD-NOS, Asperger's, High-Functioning Autism, Bipolar, you name it.

 

I am so sad that this has torn my family apart. We have to do everything separate because most of the time my son is too afraid to go to new places. It just broke my heart the other night again... I took my daughter to a magic show on Monday night at school and my son really wanted to try to go. I went to go get him and he just cried and cried and said that he really wanted to go but something told him that if he did his head would be smashed on the ground.

I left him with my husband and pulled out of the driveway with tears in my eyes again. I don't even bother wearing eyeliner any more because I cry almost every day. I try to joke about this, just like some of the other Mom's here. It just helps me get through it somehow. We all know there is nothing funny about this, but if we don't try to make eachother laugh once in a while we will fold up and just give up I think.

 

I am also very, very angry at the "world renowned" pediatric neurologist that I saw at University of California Irvine that looked me in the eye when I begged him to treat my son for PANDAS 4 years ago and he told me "Oh I don't believe in that PANDAS stuff". He said he has high-functioning autism. Just hire a behaviorist.

 

I am sad that my son has not been able to hold onto a friend, that he is so sensitive and gets hurt or angry at the flip of a switch which alienates other children that just don't understand what is "wrong" with him.

 

I am sad that my father-in-law and mother-in-law came into my home and told my husband I that we better start being really tough on my son quick or that he would end up in jail someday. They wanted us to physically hurt him, MAKE him behave.

 

But what I am the saddest about is that my son has lost years of his development and I don't know how to get that back.

 

Okay, enough mad and sad stuff. We have an appt. next week with an immunologist and a phone consult with Dr. K. coming and I am hoping and praying that my son can get IVIG and that our insurance will pay for it.

 

I have the same worries that Faith does. Is it too late. My son has not "gone through" puberty yet completely, but it is starting. I feel like I am in a race against time. I am hopeful because he has gotten better in many ways with the high dose augmentin, but we have a lot of healing to do.

 

Thanks for listening to me vent...

 

Judy...

 

Hey Judy - this is DeAnn. I totally understand and share your feelings! As you know we went through every type of doctor we could think of to find help for my son. Our story is a little different in that the doctors basiclly said that my child was an enigma. We had some different diagnosis (food allergies,pyroluria,zinc deficiency,copper/zinc imbalance,some heavy metals, etc.) but even with those issues being addressed we continued to have problems on and off to varying degrees. Even the clinic that treated him for those problems said he was their most difficult case and there was only so much they could do. After he was inpatient last year the psychiatrist kept giving me these canned responses to his problems. I told him about the horrible nightmares and he would say that it was a sign of being in a manic phase. I would ask why my son would be fine for awhile and then crash - he would say that bipolar kids cycle but yet my son didn't fit the bipolar profile. When I was just in to see him after we were diagnosed with PANDAS he said well he doesn't have any facial tics so.... This is also the guy that wanted to put my 11 year old child on Lithium!!! He reserves that for those with severe mood disorders. This is also the guy that looked at my sons ASO levels a year ago and said that they were not that high.....when we bring him the results now he says it's not PANDAS! He suspected it a year ago but now it's not! Now he says that this may all be the beginning of schizophrenia! Oh my God!!! I am sooooo glad that I refused to put him on Lithium (it fries your liver and brain) and kept on searching! I am sad about all the things that my son has missed too. He has been living with this for about 10 years! PANDAS affects the whole family! My other children have thought that he is just bad etc. To be totally honest there were times that I wondered too - although I knew that something was wrong! It is also sad that these kids know they are not "normal" and want to be so badly!!! How horrible it must be to think about killing your friends and family, ruining everything that has ever been special to you, etc. I guess those of us with the older children have every reason to be mad, sad, and frightened! I now have a 12 1/2 year old child whose brain has been attacked for the last 10 years and now we have to move ASAP because it might be too late! Judy I guess we need to be thankful that we now know what has been causing all of this and that there is hope! I am also thankful that I found you and the others here so that I no longer feel alone in the world and that there are many out there that can relate to our situation. I am rambling and did not plan on it but I am mad too!!! I think of you daily and hope that your upcoming appointments will move you closer to a cure for your little guy!! We have to focus on the future as we can not change the past. Our kids now atleast have hope of having a somewhat "normal" life. My son has his IVIG treatment scheduled for December 3rd and 4th. I pray it works! It will be the best Christmas gift ever!!!!! DeAnn

 

P.S. I just received my test kit today. I have to wait a little bit though because we just finished the steroid burst and that will lower the numbers.

[momtocole1]

Faith,

 

Thank you for the nice note. You are right,at least now we know, and we can get them help. I wish I could go back to every doctor I saw and ask them for a refund because so much was not covered by insurance. I would take all that money, and it is thousands and I would use it for IVIG. If I had any left I would give it to another parent that needs it for treatment for their child.

 

If I wasn't so caught up in all of this and my son was recovered I would write a book and give every dime to research for PANDAS. I don't want anyone else to search and search like we did. I don't want other people to give up and just believe what the doctors tell them. I feel like because we never gave up we found our answer. We found the key, now we just have to use it and hope and pray that it will help them overcome this.

 

Let's make a pact that in a year from now when they ARE doing so much better we will travel somewhere fun, and meet in the middle of the country between our two states and celebrate! We can bring the boys and they can share their triumph over this!

 

Talk to you soon,

 

Judy...

 

Dear Faith, (and the rest of the forum),

Our two boys must have been in the same batch that Kathy Alvarez ran late yesterday at University of OK. My son's number was 165. I was happy to know that I'm not crazy that these symptoms are real, but sad to get the confirmation and realize that my son has suffered with this for so long.

 

I am in the same boat as Faith somewhat, though my son is 1 1/2 years older He will turn 12 in Novemer, and his OCD is much worse. I too am angry that he has suffered with this for so long. We just ordered copies of all his medical records and realized the first strep infection was when he was in 1st grade. I still know the date, 4/23/03. I will never forget his first grade teacher meeting me at the door one day and asking me if Ryan had Tourette's sydrome. I almost screamed. I had never even imagined that could be the case. He just had this one tic that came up overnight that was like a grunting sound, things were never the same again. He used to be so good at math and now he is so afraid of the letter X that he can't even do one math problem right now. He used to write long stories, by hand, I would find little books that he made all over the house and now he can barely lift a pencil.

 

I am also angry that my son and our whole family have suffered for almost 6 years with this horrible disorder. We took him to every doctor under the sun, he was diagnosed with Anxiety, OCD, PDD-NOS, Asperger's, High-Functioning Autism, Bipolar, you name it.

 

I am so sad that this has torn my family apart. We have to do everything separate because most of the time my son is too afraid to go to new places. It just broke my heart the other night again... I took my daughter to a magic show on Monday night at school and my son really wanted to try to go. I went to go get him and he just cried and cried and said that he really wanted to go but something told him that if he did his head would be smashed on the ground.

I left him with my husband and pulled out of the driveway with tears in my eyes again. I don't even bother wearing eyeliner any more because I cry almost every day. I try to joke about this, just like some of the other Mom's here. It just helps me get through it somehow. We all know there is nothing funny about this, but if we don't try to make eachother laugh once in a while we will fold up and just give up I think.

 

I am also very, very angry at the "world renowned" pediatric neurologist that I saw at University of California Irvine that looked me in the eye when I begged him to treat my son for PANDAS 4 years ago and he told me "Oh I don't believe in that PANDAS stuff". He said he has high-functioning autism. Just hire a behaviorist.

 

I am sad that my son has not been able to hold onto a friend, that he is so sensitive and gets hurt or angry at the flip of a switch which alienates other children that just don't understand what is "wrong" with him.

 

I am sad that my father-in-law and mother-in-law came into my home and told my husband I that we better start being really tough on my son quick or that he would end up in jail someday. They wanted us to physically hurt him, MAKE him behave.

 

But what I am the saddest about is that my son has lost years of his development and I don't know how to get that back.

 

Okay, enough mad and sad stuff. We have an appt. next week with an immunologist and a phone consult with Dr. K. coming and I am hoping and praying that my son can get IVIG and that our insurance will pay for it.

 

I have the same worries that Faith does. Is it too late. My son has not "gone through" puberty yet completely, but it is starting. I feel like I am in a race against time. I am hopeful because he has gotten better in many ways with the high dose augmentin, but we have a lot of healing to do.

 

Thanks for listening to me vent...

 

Judy...

 

Hey Judy - this is DeAnn. I totally understand and share your feelings! As you know we went through every type of doctor we could think of to find help for my son. Our story is a little different in that the doctors basiclly said that my child was an enigma. We had some different diagnosis (food allergies,pyroluria,zinc deficiency,copper/zinc imbalance,some heavy metals, etc.) but even with those issues being addressed we continued to have problems on and off to varying degrees. Even the clinic that treated him for those problems said he was their most difficult case and there was only so much they could do. After he was inpatient last year the psychiatrist kept giving me these canned responses to his problems. I told him about the horrible nightmares and he would say that it was a sign of being in a manic phase. I would ask why my son would be fine for awhile and then crash - he would say that bipolar kids cycle but yet my son didn't fit the bipolar profile. When I was just in to see him after we were diagnosed with PANDAS he said well he doesn't have any facial tics so.... This is also the guy that wanted to put my 11 year old child on Lithium!!! He reserves that for those with severe mood disorders. This is also the guy that looked at my sons ASO levels a year ago and said that they were not that high.....when we bring him the results now he says it's not PANDAS! He suspected it a year ago but now it's not! Now he says that this may all be the beginning of schizophrenia! Oh my God!!! I am sooooo glad that I refused to put him on Lithium (it fries your liver and brain) and kept on searching! I am sad about all the things that my son has missed too. He has been living with this for about 10 years! PANDAS affects the whole family! My other children have thought that he is just bad etc. To be totally honest there were times that I wondered too - although I knew that something was wrong! It is also sad that these kids know they are not "normal" and want to be so badly!!! How horrible it must be to think about killing your friends and family, ruining everything that has ever been special to you, etc. I guess those of us with the older children have every reason to be mad, sad, and frightened! I now have a 12 1/2 year old child whose brain has been attacked for the last 10 years and now we have to move ASAP because it might be too late! Judy I guess we need to be thankful that we now know what has been causing all of this and that there is hope! I am also thankful that I found you and the others here so that I no longer feel alone in the world and that there are many out there that can relate to our situation. I am rambling and did not plan on it but I am mad too!!! I think of you daily and hope that your upcoming appointments will move you closer to a cure for your little guy!! We have to focus on the future as we can not change the past. Our kids now atleast have hope of having a somewhat "normal" life. My son has his IVIG treatment scheduled for December 3rd and 4th. I pray it works! It will be the best Christmas gift ever!!!!! DeAnn

 

P.S. I just received my test kit today. I have to wait a little bit though because we just finished the steroid burst and that will lower the numbers.

[Debbie1]

Dr. L. told us at our first visit with her that she does not believe in the "puberty cut off". My dd is 12 so it was a big concern for us as well. I hope this puts your mind at ease a bit.

[faith]

Judy,

The above was from DeAne, but I will echo her words. Let's just hope that the path to healing continues and we don't get any doors closed. Interesting that my son's number is higher than yours. don't know if that means anything. In one way yours has worse ocd, and mine has the worse tics.

 

Well good that you're going to talk with Dr. K? One thing I think we shouldn't get hung up on is the doctors and people that are NOT helpful, just try to focus on who IS, you know? I gotta do the same about my child, I'm trying to focus on the now, and I'm worried more about the future than the past. Keep us updated.

 

Faith

[sf_mom]

Judy,

 

So sorry your son is sick, I 'we all' understand, as you probably know.... I'm angry too. Hopefully, tomorrow we'll find the anger that turns into motivation. You are on the right path to getting your son help.

 

-Wendy

[mama2alex]

Judy,

 

I've read so many posts now that I was surprised to find tears welling up when I read yours. I think it's because you just laid out what we're all feeling or have felt at some point - the grief, fear, anger, frustration and tears. I hope Dr. K and your immunologist are able to give the help he needs immediately. Don't waste any time with doctors who don't "believe" or can't help you. You are on the right path, just keep going and you'll get your son the help he needs. Please keep us posted.

 

Jennifer

[PatAnne]

Dear Judy (and everyone!),

I have never read a story more identical to ours, thank you for writing it! My HFA son got get a diagnosis of PANDAS almost five years ago by a very well respected immuno in NJ. It never seemed to impress a single specialist we saw after that( you know, the old "internal eye roll thing!)

I have been VERY fortunate however to have an MD husband who has written scripts for prophil abxs after we could longer make trips to see this immuno.

There really was not any other therapy offered to us so when we finally saw Dr. L. a couple of weeks ago I was shocked to hear her ask if we would be willing to consider Pex or IVIG if the cam kinase results were positive. God, I would have done ANYTHING for that option 5 or 10 years ago (which was our first strep nightmare).

My son is now thirteen and well into puberty and the OCD has also gotten worse with illness. Cognitive Behavior therapy is helping the intrusive catastrophic worries.

Last fall the strep had my son on his hands and knees cleaning underneath carpets and falling apart when I left him just to take a shower. In the spring he got pneumococcal pneumonia and was hospitalized. We saw a serious regression following this with depression and panic attacks so bad we took him out of school. The new psych said "bipolar" which Dr. L. just shook her head over...said she hears this all the time.

School has been a constant struggle because he goes so far down when ill. He refuses to try to learn anything because he is so anxious. Only when staff sees the change in him with abx's do they realize this is a very unique kid.

So, we are waiting to draw the serum for Cunningham's test when he is in a dive (and time is running out till January when the lab opens again) but I feel maybe, just maybe, we can still help him. Dr. L told me she had a patient who did not get PEX till way into his teens and it permanently lowered his horrendous anxiety.

It's funny when someone actually offers you help you are too afraid that this too will just be a figment of your imagination! Like, if that test says no, we're nowhere again.

thanks for listening!

P

 

 

Dear Faith, (and the rest of the forum),

Our two boys must have been in the same batch that Kathy Alvarez ran late yesterday at University of OK. My son's number was 165. I was happy to know that I'm not crazy that these symptoms are real, but sad to get the confirmation and realize that my son has suffered with this for so long.

 

I am in the same boat as Faith somewhat, though my son is 1 1/2 years older He will turn 12 in Novemer, and his OCD is much worse. I too am angry that he has suffered with this for so long. We just ordered copies of all his medical records and realized the first strep infection was when he was in 1st grade. I still know the date, 4/23/03. I will never forget his first grade teacher meeting me at the door one day and asking me if Ryan had Tourette's sydrome. I almost screamed. I had never even imagined that could be the case. He just had this one tic that came up overnight that was like a grunting sound, things were never the same again. He used to be so good at math and now he is so afraid of the letter X that he can't even do one math problem right now. He used to write long stories, by hand, I would find little books that he made all over the house and now he can barely lift a pencil.

 

I am also angry that my son and our whole family have suffered for almost 6 years with this horrible disorder. We took him to every doctor under the sun, he was diagnosed with Anxiety, OCD, PDD-NOS, Asperger's, High-Functioning Autism, Bipolar, you name it.

 

I am so sad that this has torn my family apart. We have to do everything separate because most of the time my son is too afraid to go to new places. It just broke my heart the other night again... I took my daughter to a magic show on Monday night at school and my son really wanted to try to go. I went to go get him and he just cried and cried and said that he really wanted to go but something told him that if he did his head would be smashed on the ground.

I left him with my husband and pulled out of the driveway with tears in my eyes again. I don't even bother wearing eyeliner any more because I cry almost every day. I try to joke about this, just like some of the other Mom's here. It just helps me get through it somehow. We all know there is nothing funny about this, but if we don't try to make eachother laugh once in a while we will fold up and just give up I think.

 

I am also very, very angry at the "world renowned" pediatric neurologist that I saw at University of California Irvine that looked me in the eye when I begged him to treat my son for PANDAS 4 years ago and he told me "Oh I don't believe in that PANDAS stuff". He said he has high-functioning autism. Just hire a behaviorist.

 

I am sad that my son has not been able to hold onto a friend, that he is so sensitive and gets hurt or angry at the flip of a switch which alienates other children that just don't understand what is "wrong" with him.

 

I am sad that my father-in-law and mother-in-law came into my home and told my husband I that we better start being really tough on my son quick or that he would end up in jail someday. They wanted us to physically hurt him, MAKE him behave.

 

But what I am the saddest about is that my son has lost years of his development and I don't know how to get that back.

 

Okay, enough mad and sad stuff. We have an appt. next week with an immunologist and a phone consult with Dr. K. coming and I am hoping and praying that my son can get IVIG and that our insurance will pay for it.

 

I have the same worries that Faith does. Is it too late. My son has not "gone through" puberty yet completely, but it is starting. I feel like I am in a race against time. I am hopeful because he has gotten better in many ways with the high dose augmentin, but we have a lot of healing to do.

 

Thanks for listening to me vent...

 

Judy...

[EAMom]

Great post Judy.

I think we should all get together and write a book when this is over.

 

Does anyone have any input on whether plasmapheresis would be better for your son (due to age?). Have you ever contacted Dr. Gupta at UC Irvine (is that who you are seeing)? Maybe he could do it? I wonder if he would be willing to contact Dr. Latimer (or Cunningham?) to discuss?

 

BTW...are you still on high dose augmentin (or did you switch to azith?)...I dont' remember. How is that going?

[matis_mom]

Judy,

I understand your frustration, but try to focus on the good stuff for now. At least now you have a clear path to follow. You know what you are dealing with. You know you are not going crazy. And you know your son is not being naughty or difficult, his brain is just sending him the wrong signals. Did you say he is about 12? My PANDAS ds just turned 12. I am surprised at how well he understands what is going on, and how knowing what is going on has helped him not be hard on himself. We are working on the OCD (trying to limit/delay the handwashing and anxiety about germs). He understands it doesn't make sense, and he is pretty cooperative when we try to help him.

About lost time in terms of development, do not be discouraged. The brain can heal. Not long ago I read "The Ultra-Mind Solution" and among other interesting things they mention, they state that they've even been able to REVERSE dementia in patients over 70 years of age (which until recently it was thought to be irreversible). It's a good book to read, it will give you ideas of what more you can do to help him in terms of nutrition, exercise, and supplements.

 

Maybe once your son is doing better you can go back to those doctors and let them have it. At least they will think about it twice before they blow another PANDAS child off!

 

I'm still trying to gather enough courage to go face my pediatrician, whom we saw three or four times since my ds started going down hill, and tell her that all the different complaints she just dismissed were all part of the same picture, she just couldn't connect the dots! As soon as flu season is over (N1H1 is doing the rounds in our county so I don't want to walk into a busy pediatric practice in the middle of it!), I will go in there, explain the situation, and hopefully guilt her into agreeing to test everyone else in the family and give us prescriptions as needed.

 

Take care,

 

Isabel

[EAMom]

Hey Patanne....

Where do you live?

I hate to ask....but would your MD (okay, I have no idea what kind of doctor he is) dh be willing to see other PANDAS kids?...it's so sad that these folks have such difficulty jumping through hoops to get abs (esp. long term at appropriate doses). Just thought I'd ask....is you don't want to post his name we you could give it to Diana at PANDASNETWORK and she can give his name out privately on a case by case basis.

 

BTW...MomMd is an MD too, but a OBGYN...so we don't send our kids to her for abs

[momtocole1]

Dear Debbie,

 

Thank you for the note. It does put my mind at ease. Is the puberty cut off just really old information that has been disproved by children post puberty that have had a full recovery? I think I just need to hear about some kids that have done well that are older.

 

I really appreciate your positive post.

 

Thanks,

 

Judy...

 

 

 

Dr. L. told us at our first visit with her that she does not believe in the "puberty cut off". My dd is 12 so it was a big concern for us as well. I hope this puts your mind at ease a bit.

[momtocole1]

Thank you Isabel, you are right, now I have a clear path to follow, I just have to be patient. I want sell my car tonight, for cash and drive him to the ER and demand IVIG. Too bad it is leased! But seriously, I just feel like there are still so many hoops, but I am going to try to keep my focus on his successful recovery. My birthday is on Monday and I am going to aim for my next birthday for him to be doing at least 90% better if not 100%. That is my dream! OCD free, and tic free and anxiety free!

 

Also thank you for the info on the brain. I will buy that book. Yes my son will be twelve on Nov. 22nd.

 

I am also very happy for you that your son understands what is going on when he has an episode. I will read your old posts to find out about the treatment you have gotten for him.

 

Thank you,

 

Judy...

 

 

 

 

 

Judy,

I understand your frustration, but try to focus on the good stuff for now. At least now you have a clear path to follow. You know what you are dealing with. You know you are not going crazy. And you know your son is not being naughty or difficult, his brain is just sending him the wrong signals. Did you say he is about 12? My PANDAS ds just turned 12. I am surprised at how well he understands what is going on, and how knowing what is going on has helped him not be hard on himself. We are working on the OCD (trying to limit/delay the handwashing and anxiety about germs). He understands it doesn't make sense, and he is pretty cooperative when we try to help him.

About lost time in terms of development, do not be discouraged. The brain can heal. Not long ago I read "The Ultra-Mind Solution" and among other interesting things they mention, they state that they've even been able to REVERSE dementia in patients over 70 years of age (which until recently it was thought to be irreversible). It's a good book to read, it will give you ideas of what more you can do to help him in terms of nutrition, exercise, and supplements.

 

Maybe once your son is doing better you can go back to those doctors and let them have it. At least they will think about it twice before they blow another PANDAS child off!

 

I'm still trying to gather enough courage to go face my pediatrician, whom we saw three or four times since my ds started going down hill, and tell her that all the different complaints she just dismissed were all part of the same picture, she just couldn't connect the dots! As soon as flu season is over (N1H1 is doing the rounds in our county so I don't want to walk into a busy pediatric practice in the middle of it!), I will go in there, explain the situation, and hopefully guilt her into agreeing to test everyone else in the family and give us prescriptions as needed.

 

Take care,

 

Isabel

[momtocole1]

Dear EAMom: I have not had any input yet on whether PEX would be bette for my son because of his age. Yes we are seeing Dr. Gupta at UC Irvine next Wednesday. I will discuss with him. We have a phone consult with Dr. K on 11/17.

 

We are still on high dose Augmentin. It does seem to be helping, slowly. It is definitely the "saw tooth" type of response that everyone talks about. We have good days and bad, good moments and bad. He had 3 teeth pulled this morning and he unraveling right now. So much pain, and discomfort from all the novicaine shots. We had put it off for so long and his baby teeth did not come out in three places and the perms came in and were causing irritation. I felt it best to do now while on high dose Aug.

 

I am keeping the motrin going today and tonight and just pray that he will stay infection free.

 

I will keep you posted. Yes, we should all write a book. A compilation of our struggles and triumphs to give hope to other children and parents.

 

Thanks,

 

Judy...

 

 

 

 

 

Great post Judy.

I think we should all get together and write a book when this is over.

 

Does anyone have any input on whether plasmapheresis would be better for your son (due to age?). Have you ever contacted Dr. Gupta at UC Irvine (is that who you are seeing)? Maybe he could do it? I wonder if he would be willing to contact Dr. Latimer (or Cunningham?) to discuss?

 

BTW...are you still on high dose augmentin (or did you switch to azith?)...I dont' remember. How is that going?

[Megs_Mom]

Great thread -you have all made me tear up tonight. This is exactly what drives me mad - all the children that are being horribly misdiagnosed, and losing significant parts of their childhood. I completely understand all the posts today about anger. It is so hard to stay positive some days - it's like as soon as I relax a little about Meg, then all of the other children start to haunt my heart. I never imagined being changed like this by my child's struggle to find her own strength again.

 

I am so glad you are all here & finding help and hope. I continue to find hope for our family and hope that we can all find ways to pass this forward in the near future. My dream is that our grandchildren will never suffer - that they will be able to get immediate treatment from their pediatrician.

 

For those of you that are looking for the "brain therapy for OCD", it is called ERP therapy - Exposure & Ritual Prevention. It can help children with OCD while you are getting them medical help. There are some old posts on this. A great book for kids up through pre-teen is "What to do when your Brain gets Stuck".

 

Thanks so much for sharing with us all.