Include unique symptoms in Cunningham blood draw

[Iowamom]

Hello!

 

This may be a no-brainer, but thought I would toss this out anyway since there has been some discussion on various symptoms that may or may not be related to having PANDAS. If you sent or have sent serum in to be analyzed by Dr. Cunningham's lab make sure to include these observations/symptoms with the history you send in. It is these odd/unusual presentations that may help solve this puzzle. You never know. My boy had binocular vision problems that interfered with his ability to coordinate eye movements (12 tiny muscles), affecting his reading and also causing him to suppress vision in one eye. Can't get any more fine motor control than that. From what I can figure out, the oculomotor circuit runs through the BG. Hmmm. I say now. He responded to vision therapy, but I have noticed MUCH smoother, less hopping & missing words, reading since being on high dose abx & IVIG.

 

The point is to not overlook anything. They will sort it out in the lab. Kathy said they are using the lab down-time to catch up on data entry, symptom correlation, hx's--etc. I am sure they would be happy to receive any histories or additional info you neglected to initially send. She said they have barely been able to keep up with the testing. They have been receiving (Diana P. about fell off her chair when I told her this) up to 14 samples A DAY!!

 

Swedo said in one of her presentations that it was the thorough histories that helped them to initially connect the dots with PANDAS.

 

Just wanted to pass this along. Dawn

[peglem]

I don't even remember what I wrote in the medical history, and we've been dealing with this soooo long and had so many things dismissed by doctors as just "stimming" or sensory problems- I don't even know if her abnormal movements are tics, chorea or compulsions. I'll try going through her medical records- but so many things we just didn't keep track of, because doctors didn't think they were important. Her draw was done in July, which isn't that long ago, but so much has happened since then, its hard to remember what happened when.

[thereishope]

I would think if you cannot put together a timeline, just list what your child is like at the time of the draw, then wait a few month and send another update. Even if you do not opt to do subsequent blood draws to compare number, it is still important for Dr Cunningham to know how your child is doing. Even if she does not have new numbers to line up with behaviors, they may at least be able to see how long the average time is for recovery, what happens to behaviors in children with lower number vs higher numbers, etc. I would think the more inof she has, the more likely she can convince people for big donations to continue research.

 

Family medical histories and the child's med history plays a piece in this too

 

I think it is important for new parents joining his forum to realize that what Dr Cunningham is doing is a study. The more info they give, the more the numbers will start to make sense in how they have a place in everything.

[Ellen]

Thanks for sharing this information, Dawn. I was speaking to a vision therapist recently, and she is familiar with PANDAS and says that it is not uncommon for kids with PANDAS to have vision difficulties requiring vision therapy. Most commonly it is difficulty with the two eyes working together. I have always attributed my son's reading difficulties to his intrusive thoughts, but I am thinking of having him evaluated by this optometrist to see if this problem is also contributing. She was not able to explain why kids with PANDAS seem to have this problem, only that she has seen it more frequently with these kids.

 

Ellen

 

Hello!

 

This may be a no-brainer, but thought I would toss this out anyway since there has been some discussion on various symptoms that may or may not be related to having PANDAS. If you sent or have sent serum in to be analyzed by Dr. Cunningham's lab make sure to include these observations/symptoms with the history you send in. It is these odd/unusual presentations that may help solve this puzzle. You never know. My boy had binocular vision problems that interfered with his ability to coordinate eye movements (12 tiny muscles), affecting his reading and also causing him to suppress vision in one eye. Can't get any more fine motor control than that. From what I can figure out, the oculomotor circuit runs through the BG. Hmmm. I say now. He responded to vision therapy, but I have noticed MUCH smoother, less hopping & missing words, reading since being on high dose abx & IVIG.

 

The point is to not overlook anything. They will sort it out in the lab. Kathy said they are using the lab down-time to catch up on data entry, symptom correlation, hx's--etc. I am sure they would be happy to receive any histories or additional info you neglected to initially send. She said they have barely been able to keep up with the testing. They have been receiving (Diana P. about fell off her chair when I told her this) up to 14 samples A DAY!!

 

Swedo said in one of her presentations that it was the thorough histories that helped them to initially connect the dots with PANDAS.

 

Just wanted to pass this along. Dawn