ANY HOPE FOR A 13 YEAR OLD WITH

[pastacey]

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

[Kay]

Patti,

Sorry you are dealing with Pandas like the rest of us here. Keep reading you will see that there are sucesses. You are not alone. I have a daughter 19 who has likely had this for quite awhile, last major onset was aat 17 but we are sure now that we have researched that she began much before that when she was younger.

 

Right now we are using antibiotics as treatment for her and it has helped a lot. Treatment seems different for each child and we all do what we feel is right for our kid. A lot of trial and error.

 

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

[Kay]

Sorry I hit the wrong button, I wanted to add to read the pinned post on the top of the page there is a lot of information there as well. Hope you can find some peace in reading and that you are not alone.

Kay

 

 

Patti,

Sorry you are dealing with Pandas like the rest of us here. Keep reading you will see that there are sucesses. You are not alone. I have a daughter 19 who has likely had this for quite awhile, last major onset was aat 17 but we are sure now that we have researched that she began much before that when she was younger.

 

Right now we are using antibiotics as treatment for her and it has helped a lot. Treatment seems different for each child and we all do what we feel is right for our kid. A lot of trial and error.

 

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

[Fixit]

ALWAYS HOPE...So many stories.....ALOT of trial and error...every person's chemistry is so different

 

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

[simplygina]

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

 

So far the doctors seem to think the length of time the child has had PANDAS doesn't make it any harder to treat.

 

My son's first known exacerbation was when he was 6. But looking back, I don't think that was the initial one. So I'm thinking my son has probably also had it around 6 years. We've seen big gains on the antibiotics. Like he is almost "normal".

 

As parents we all go through different stage of grieving, often more than once. Realize that there is hope & while it is normal to feel sad or angry, there is more and more information & research going on all the time. I'm very optimistic that in the next few years we will have some answers & more treatments to help our kids. I also think that with the research showing more and more than "mental" disorders are physiological in nature, insurance will begin to cover more treatments, making things like IVIG within reach for families that need it.

[Joan Pandas Mom]

Hi Patti,

I'm sorry and know how you feel. My son is 15 1/2 and has had PANDAS for 6 1/2 years. We just had IVIG last week. I feel like it is out last hope. Right now symptoms have really ramped up, but I have been told to expect that for a few weeks. I will keep you posted and please pm me anytime with ?'s too.

[melanie]

i HAVE A 16 YR OLD WHO IS BEING TREATED with IVIG and doing much better so there is help and hope. Please dont give up I do want you to know that 13-15 was the worst he seems to be settling down a bit now. Keep posting it helps everyone to know whats going on.Theres alot of us that have teens.

 

Melanie

[matis_mom]

Oh yes! There is hope! My son is 13. We think he started around age 8/9, but are not sure. He has been treated for about 10 months. He is doing tons better now from high strength abxs plus a few steroid courses. Still, we are headed for plasmapheresis to get back to 100% normal.

Yes, there is hope. Just be aware the road to recovery is not always straight, and you will probably not see immediate results from antibiotics alone. You really need to see one of the specialists that have extensive experience with PANDAS. Wishing your family the best!

 

Isabel

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

[wornoutmom]

Son is 14 1/2 - diagnosed at 7, suspect it started age 3. It's never too late - and thinking it was got me off track 2 years ago during his worst exacerbation and onto the psych med/hospital merry go round. For the grace of his psychiatrist, Beth Maloney, this forum, and a few wonderful doctors, we are finally getting real PANDAS treatment and are up for IVIG in 2 weeks. Don't give up!!!

[kimballot]

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope?

 

xx,

patti

 

My son is 13 and has been battling PANDAS literally since he was about a year old. Is there hope - you betcha! I think in my sons case, though I will not be "saving" him - like Saving Sammy - rather, we Manage him... We know what to look for and try to treat it quickly. Whenever he gets sick with any kind of infection he has PANDAS symptoms first. Through the years we have been caught off guard when the symptoms come. I will NEVER let that happen again.

 

With his most recent exacerbation we did all the cunningham tests and appropriate bloodwork and found a PANDAS doc that we can work with. From now on, I will call the PANDAS doc at first sign of PANDAS symptoms to do blood work, figure out what the underlying infection is, and treat.

 

I am SO much more attentive to things like urinary frequency, separation anxiety at night, and nightmares. I learn things on this forum everyday that I can apply. I am hoping to teach my son to pay attention to these signs in his own body so he can learn to call the doctor when it happens in the future.

 

Don't give up - we are working together to figure this out one post at a time!

Edited May 28, 2010 by kimballot

[Iowadawn]

Patti-- Never too late. Get to a PANDAS doc. Our son was most likely short of 2 when this all started. He is 11 now. He was dx'd at age 10. Forge ahead and get your son treatment he AND the family needs. It is very frightening. So many of us know that feeling of "losing" a child, a family to this awful disease. You have a good cry, say a prayer and keep fighting to get your son back. Best wishes & prayers. Dawn PM me if you would like.

[Tenacity]

Dear Patti,

 

Just read your most recent post -- then looked up and read your previous posts. I am so sorry for your son's and you and your family's suffering. It is a suffering deeply familiar to me.

 

I'm pretty new to the PANDAS diagnosis myself, and my son (11 years old) has been through ###### for several years, and is extremely ill right now, so I'm in no position to offer a promise of a happy ending. I'm beat-up and frightened out of my mind, just like you.

 

However, I am GRATEFUL, finally, to have a diagnosis of post-infectious autoimmune disease of the brain (late as it is!) -- not because I want my son to be sick (although there have been times when some prejudiced and arrogant medical professionals have acted as though that was the case!), but because I believe the diagnosis is correct; and I am GRATEFUL for the tiny handful of wonderful doctors I now have working to help my son. (They were not easy to find!) Knowledge is power. How can you wage effective battle against something, when you have no idea what it is, you have no one to help you -- or, what's worse, perhaps you have the wrong idea of what it is, and perhaps the people trying to help are actually doing the wrong thing!

 

Harking back to the things you described in your previous posts.... It sure sounds to me as though your son is sick with an autoimmune disease. Bacteria, viruses, allergies, and vaccinations affect immune systems, not psyches. And behavioral modification programs and psychotropic drugs do not rein in autoimmune disease. Aggressively pursue expert medical PANDAS/PITAND help for your son, even if it means going out of town, and even if it means stepping on the toes of professionals who don't have the intellectual or moral wherewithal to understand and support you.

 

Yes, although I'm terrified, I do believe there is hope. But we have to be brave and scientific -- even when (especially when!) most of the doctors around us are not.

 

Tenacity

Edited September 26, 2010 by Tenacity

[Phasmid]

Hi Tenacity, can I ask where you are located? Who are your doctors?