Son - pandas Father- Sydham chorea

[stacielynne]

This is my first time posting anything on this site. I discovered this site months ago. I have been on it everyday reading about everyone experiences with Pandas. I just want every parent, that posted to know how inspiring they are to me. In some of my darkest days with my son this website gave me hope. Here is a timeline and Family history of my son.

 

Family History

 

Mother:Spinal menigitis (1year old)

Father: Sydenham Chorea(12 years old)

Father Aunt: Rhemautic Fever(8years old)

 

 

Tylers timeline

 

Oct.2007 Dtap,Ipv and MMR Shot

Oct2007- April 2008- My healthy child was constatly sick.(sinus infections, intestional flu, bronchitis, flu and colds)

May 2008- His symtoms were so severe, I rushed him to the Emergency Room.

May2008- Within a week he developed Tics(neck jerking). OCD, Seperation anxiety and rage attacks.

April-May 2008- He had a rash on his butt that would not go away.

June-August2008- symptoms improved 50%(mild ocd, rage attacks and his fingers look like they were playing piano)

September- Present- 95% little OCD

 

Medicine

He was on clondine for a few weeks in June and antibiotic. No medications from July on.

 

Diagnosis

 

Pediatrician- Maybe Pandas

Neurologist- Tic Disorder

 

 

I have researched Pandas every free moment since May. We are now starting a starting a special diet and vitamin program. I just want to thank everyone again for the knowledge and inspiration you have given me. Tyler is doing well right now, but I will constantly search for answers. I welcome and ideas or thought on this. God bless you all.

[amy s]

This is my first time posting anything on this site. I discovered this site months ago. I have been on it everyday reading about everyone experiences with Pandas. I just want every parent, that posted to know how inspiring they are to me. In some of my darkest days with my son this website gave me hope. Here is a timeline and Family history of my son.

 

Family History

 

Mother:Spinal menigitis (1year old)

Father: Sydenham Chorea(12 years old)

Father Aunt: Rhemautic Fever(8years old)

 

 

Tylers timeline

 

Oct.2007 Dtap,Ipv and MMR Shot

Oct2007- April 2008- My healthy child was constatly sick.(sinus infections, intestional flu, bronchitis, flu and colds)

May 2008- His symtoms were so severe, I rushed him to the Emergency Room.

May2008- Within a week he developed Tics(neck jerking). OCD, Seperation anxiety and rage attacks.

April-May 2008- He had a rash on his butt that would not go away.

June-August2008- symptoms improved 50%(mild ocd, rage attacks and his fingers look like they were playing piano)

September- Present- 95% little OCD

 

Medicine

He was on clondine for a few weeks in June and antibiotic. No medications from July on.

 

Diagnosis

 

Pediatrician- Maybe Pandas

Neurologist- Tic Disorder

 

 

I have researched Pandas every free moment since May. We are now starting a starting a special diet and vitamin program. I just want to thank everyone again for the knowledge and inspiration you have given me. Tyler is doing well right now, but I will constantly search for answers. I welcome and ideas or thought on this. God bless you all.

 

I'm glad to hear that your son is currently doing so much better. I know what you mean about researching pandas. I think we all do that. I'm sorry to hear that your child was stricken with this. It is horrible to see such big changes in our little ones. I love that this pandas group is so active. It helps when people tell their story... I remember feeling some relief when I could read other's stories and see that my child was not alone and that people were finding some success with the various treatments. Good luck to your family and child.

Regards,

amy s

[Dedee]

Hello and welcome,

 

I am glad you were able to find this forum. You will find much support and information here. I was wondering what the current state is for your son. Are you going through a mild phase that is something he is able to live and thrive in? If the symptoms are still severe to the point that his everyday life is affected then I encourage you to find a physician who is knowledgeable in PANDAS and other issues of this type. There are several references here on this forum. I realize many have to travel, but I assure you it would be worth it in the long run. Even if your current physician agrees it may be PANDAS, that is not helpful unless he is experienced in treating these children. You would find much comfort in finding a physician with experience in this area. I suppose I have stressed that enough. I am so glad you are being active in your childs care, he is very lucky to have such a dedicated mother. Good luck with your journey. Keep us posted.

 

Dedee

[michele]

Hi and welcome. I was glad to see your post. I was also happy to see the symptoms are now calmed down. It is during those times we can take a breath and focus on other things in our lives. I have had a horrible time with Dr's over the past six years my son has had the symptoms. All I can say is beware when using a Dr. out of state that they will not prescribe meds over state lines very often. I paid big bucks a couple times to have the Dr's notes mean very little back in my home state of OH. Dr's here and we have seen lots, want proven documented research from NIMH or NIH. I just wish they would complete an updated paper saying here is the treatment plan to follow. Sweedo doesnot support the IVIG that many here are getting. She basically states pen vk is as good as azith and if that is not so then why not state azith is better? No Dr. in OH has ever been willing to even try the azith for my son , they will do the omnicef but not azith. Sweedo did talk about the midwest OH resistance to azith so that must be why.

We are currently trying psychiatry/psychology and hoping the combo of meds and behavior therapy will make a difference. I have found the moods are the worst part of this illness. Lots of anger, and inability to use self control. Our neuro called it a tic disorder also and ADHD. I have resorted to mood altering drugs because we have to live with him and otherwise we would be in misery. The tics are minor and we can live with them but the anger not so much. Our ped knows very little and basically has been there for referalls which have not all been worth it. I pray you find the right Dr's locally to treat your child. It is not a disorder that just goes away overnight. We will probably be dealing with these symptoms for most of our childrens childhoods so finding a treatment plan will be very important. aLL THE BEST

Michele

Hello and welcome,

 

I am glad you were able to find this forum. You will find much support and information here. I was wondering what the current state is for your son. Are you going through a mild phase that is something he is able to live and thrive in? If the symptoms are still severe to the point that his everyday life is affected then I encourage you to find a physician who is knowledgeable in PANDAS and other issues of this type. There are several references here on this forum. I realize many have to travel, but I assure you it would be worth it in the long run. Even if your current physician agrees it may be PANDAS, that is not helpful unless he is experienced in treating these children. You would find much comfort in finding a physician with experience in this area. I suppose I have stressed that enough. I am so glad you are being active in your childs care, he is very lucky to have such a dedicated mother. Good luck with your journey. Keep us posted.

 

Dedee

[stacielynne]

Hi and welcome. I was glad to see your post. I was also happy to see the symptoms are now calmed down. It is during those times we can take a breath and focus on other things in our lives. I have had a horrible time with Dr's over the past six years my son has had the symptoms. All I can say is beware when using a Dr. out of state that they will not prescribe meds over state lines very often. I paid big bucks a couple times to have the Dr's notes mean very little back in my home state of OH. Dr's here and we have seen lots, want proven documented research from NIMH or NIH. I just wish they would complete an updated paper saying here is the treatment plan to follow. Sweedo doesnot support the IVIG that many here are getting. She basically states pen vk is as good as azith and if that is not so then why not state azith is better? No Dr. in OH has ever been willing to even try the azith for my son , they will do the omnicef but not azith. Sweedo did talk about the midwest OH resistance to azith so that must be why.

We are currently trying psychiatry/psychology and hoping the combo of meds and behavior therapy will make a difference. I have found the moods are the worst part of this illness. Lots of anger, and inability to use self control. Our neuro called it a tic disorder also and ADHD. I have resorted to mood altering drugs because we have to live with him and otherwise we would be in misery. The tics are minor and we can live with them but the anger not so much. Our ped knows very little and basically has been there for referalls which have not all been worth it. I pray you find the right Dr's locally to treat your child. It is not a disorder that just goes away overnight. We will probably be dealing with these symptoms for most of our childrens childhoods so finding a treatment plan will be very important. aLL THE BEST

Michele

Hello and welcome,

 

I am glad you were able to find this forum. You will find much support and information here. I was wondering what the current state is for your son. Are you going through a mild phase that is something he is able to live and thrive in? If the symptoms are still severe to the point that his everyday life is affected then I encourage you to find a physician who is knowledgeable in PANDAS and other issues of this type. There are several references here on this forum. I realize many have to travel, but I assure you it would be worth it in the long run. Even if your current physician agrees it may be PANDAS, that is not helpful unless he is experienced in treating these children. You would find much comfort in finding a physician with experience in this area. I suppose I have stressed that enough. I am so glad you are being active in your childs care, he is very lucky to have such a dedicated mother. Good luck with your journey. Keep us posted.

 

Dedee