Do I Have PANDAS on the brain or is it possible... my other son might

[sf_mom]

Many may know our story but if you don't I'll summarize in brief.

 

All our children (5 1/2 year old boy and 2 1/2 year old boy/girl twins) were unknowingly exposed to a child at a playdate/lunch who we now believe had Scarlet Fever in November 2007. At the playdate the little boy had a swollen gland the size of a golf ball and tested positive for strep the next day. The mother never informed us of the positive strep test the following day. Within a week our older son became very ill with a fever for 4 or 5 days with what looked like pink eye in both eyes. He seemed to improve on his own but can not remember specifics due to the fact that our other son became very ill, ended up in the hospital and diagnosed with Kawasaki's. We now know the following.

 

* Our son who is 5 1/2: PANDAS, CaM Kinase 124 (11 days post 5 day steroid burst when blood was drawn), ASO 244, Anti-DNase-B - Negative

 

* Son's friend who is 6 1/2: PANDAS, CaM Kinase 147, Anti-DNase-B is 680

 

* Our other son is 2 1/2: Treated with IVIG 5 days into high fever in November 2007

 

I am actually concerned that our 2 1/2 year old boy might also be PANDAS or is it just a 2 year old thing and I am just going crazy with PANDAS.

 

Odd behavior:

 

* Only likes to wear red or PJs or eat things with red wrappers

 

* Vast vocabulary

 

* Often organizes toy cars by color and lines them up neatly... prefers red cars.

 

* Does the whole opposing concepts: wants to eat but turns head when you try to feed him

 

* Tantrums that appear out of no where

 

* Often has swollen, puffy eyes with dark circles.

 

What are your thoughts..... should I be concerned.

[ajcire]

What made them do IVIG on your younger ds due to fever?

 

It's so hard. I have a non pandas 2 1/2 year old and some of what you describe sounds like the age of 2 and some sounds a bit more than just the age of 2. Could you run the cunningham test on him to get some answers?

 

I actually asked the same thing a while ago because my non pandas dd was starting to make me nervous and had strep. I think, and HOPE that I just am so aware that I am starting to see things that aren't there with her.

 

 

 

Many may know our story but if you don't I'll summarize in brief.

 

All our children (5 1/2 year old boy and 2 1/2 year old boy/girl twins) were unknowingly exposed to a child at a playdate/lunch who we now believe had Scarlet Fever in November 2007. At the playdate the little boy had a swollen gland the size of a golf ball and tested positive for strep the next day. The mother never informed us of the positive strep test the following day. Within a week our older son became very ill with a fever for 4 or 5 days with what looked like pink eye in both eyes. He seemed to improve on his own but can not remember specifics due to the fact that our other son became very ill, ended up in the hospital and diagnosed with Kawasaki's. We now know the following.

 

* Our son who is 5 1/2: PANDAS, CaM Kinase 124 (11 days post 5 day steroid burst when blood was drawn), ASO 244, Anti-DNase-B - Negative

 

* Son's friend who is 6 1/2: PANDAS, CaM Kinase 147, Anti-DNase-B is 680

 

* Our other son is 2 1/2: Treated with IVIG 5 days into high fever in November 2007

 

I am actually concerned that our 2 1/2 year old boy might also be PANDAS or is just a 2 year old thing and I am just going crazy with PANDAS.

 

Odd behavior:

 

* Only likes to only wear red or PJs

 

* Vast vocabulary

 

* Often organizes toy cars by color and lines them up neatly

 

* Does the whole opposing concepts: wants to eat but turns head when you try to feed

 

* Tantrums that appear out of no where

 

What are your thoughts..... should I be concerned.

[sf_mom]

They said it was Kawasaki's but he didn't have all of the symptoms. Typical treatment for Kawasaki's is immediate IVIG and we were already in the hospital for 4 days at that point. Dr. K seemed to think it was possible that Kawasaki's is an extreme presentation of PANDAS.

 

My concern... is that I'm overly concerned about typical two year old behavior BUT our daughter who is also 2 1/2 doesn't have the same behavior.

 

 

 

What made them do IVIG on your younger ds due to fever?

 

It's so hard. I have a non pandas 2 1/2 year old and some of what you describe sounds like the age of 2 and some sounds a bit more than just the age of 2. Could you run the cunningham test on him to get some answers?

 

I actually asked the same thing a while ago because my non pandas dd was starting to make me nervous and had strep. I think, and HOPE that I just am so aware that I am starting to see things that aren't there with her.

 

 

 

Many may know our story but if you don't I'll summarize in brief.

 

All our children (5 1/2 year old boy and 2 1/2 year old boy/girl twins) were unknowingly exposed to a child at a playdate/lunch who we now believe had Scarlet Fever in November 2007. At the playdate the little boy had a swollen gland the size of a golf ball and tested positive for strep the next day. The mother never informed us of the positive strep test the following day. Within a week our older son became very ill with a fever for 4 or 5 days with what looked like pink eye in both eyes. He seemed to improve on his own but can not remember specifics due to the fact that our other son became very ill, ended up in the hospital and diagnosed with Kawasaki's. We now know the following.

 

* Our son who is 5 1/2: PANDAS, CaM Kinase 124 (11 days post 5 day steroid burst when blood was drawn), ASO 244, Anti-DNase-B - Negative

 

* Son's friend who is 6 1/2: PANDAS, CaM Kinase 147, Anti-DNase-B is 680

 

* Our other son is 2 1/2: Treated with IVIG 5 days into high fever in November 2007

 

I am actually concerned that our 2 1/2 year old boy might also be PANDAS or is just a 2 year old thing and I am just going crazy with PANDAS.

 

Odd behavior:

 

* Only likes to only wear red or PJs

 

* Vast vocabulary

 

* Often organizes toy cars by color and lines them up neatly

 

* Does the whole opposing concepts: wants to eat but turns head when you try to feed

 

* Tantrums that appear out of no where

 

What are your thoughts..... should I be concerned.

[KeithandElizabeth]

Hi Wendy:

 

I can really relate to you because I am always worrying about my 10 1/2 year old daughter, who did have high Cunningham numbers, but really doesn't show typical PANDA symptoms. The problem then becomes that very normal kid things can start to look like PANDAS. Will we ever not be fearful?

 

Anyway, I would suggest maybe doing the Cunningham blood work with your 2 year old. But, as in my case, you must remember that this blood work is still in test mode and nothing definitive can be stated. This is what Dr. Cunningham, Dr. Leckman and Dr. K said to me via email regarding my daughter's blood work. They told me not to do anything with her at this point in time. That said, it does give you more information and perhaps if it is negative, it will give you relief!

 

Elizabeth

[ajcire]

Ah, I didn't know anything about kawasaki and I had never even heard of IVIG until pandas. That is interesting that kawasakis might be connected to pandas and I could see why you might be concerned. That said it is so hard to tell what is what anymore. I know the other day a friend of mine made reference to how her 7 year old ds seems to have regressed and is such a cry baby (not a pandas kid, just a typical 7 year old) and I stopped and thought.. goodness, what if some of what I think is the pandas in my ds is just typical 7... but my gut still is telling me that I can tell the difference in when he is just having kid meltdowns versus pandas meltdowns.

[sf_mom]

I just e-mailed Madeleine Cunningham for another kit. I'm testing him just to rule it out and confirm his behavior is just a 2 year old thing. I'll update when I get the results.

 

-Wendy

[faith]

Hi Wendy,

I think we all have no other choice than to be paranoid. I'm sure some of it is definitely 2 yr old behavior, after all it is called "the terrible two's"......

 

just curious, are the twins on the same course developmental-wise, i.e. walking, talking, etc.?

 

 

Faith

[sf_mom]

Romy 'our boy' is verbally way ahead of our daughter Bena. Romy has a vast vocabulary, talks in full sentences, you can point to almost any letter in the alphabet and he can tell the letter, remembers everything..... even repeats saying he's heard once from his older brother.... like, 'that is mine, I got it for my birthday'. Bena is way ahead of Romy in gross motor skills with normal verbal development.

 

-Wendy

[mama2alex]

Hi Wendy,

 

I would trust your mother's intuition and go after this aggressively. If it's just a two-year old phase, no harm done, but if it's PANDAS, waiting and seeing could be harmful. Maybe you can run this by Margo?

 

Jennifer

 

Hi Wendy,

I think we all have no other choice than to be paranoid. I'm sure some of it is definitely 2 yr old behavior, after all it is called "the terrible two's"......

 

just curious, are the twins on the same course developmental-wise, i.e. walking, talking, etc.?

 

 

Faith

[sf_mom]

I'm thinking about running it by Dr. Lewis on Thursday too. I may need him to provide script for Cunningham blood draw. I'm not interested in waiting to find out a year from now that he has been sick too. I've attacked this so aggressively with our older son and we are seeing great results. BUT, I'm a little overwhelmed with the possibility.

 

-Wendy

[thereishope]

Since you have boy/girl twins, they may develop in different patterns as well. At times, one twin is "stronger" at developing than the other. Let me give some basic kid info on my kids...I have a 3 yr old girl, 6 yr old boy (PANDAS), 8 yr old boy. As my girl gets older, I see she is strong minded and more definite in her ways than the boys were.She could care less what I have to say. My boys were easier than their sister. But the boys would have things like non PANDAS meltdowns, night terrors, and even my non PANDAS son around the age of 1-2 yrs old would line his cars up, line up shoes, etc. I also do see OCD tendencies in my non PANDAS son, but they are nothing to be concerned about. I have had times since my 6 yr olds PANDAS diagnosis, where I see behaviors in my 8 yr old that I would feak out if I saw my 6 yr old doing. But that also shows me that some of my PANDAS son's behaviors are just a child being a child.

 

It is so hard to distinguish behaviors at times.

[sf_mom]

Vickie, I agree and I think I've been so PANDAS HYPER aware that I'm over analyzing everyone's kid.... It might be that I'm just suffering from PPES 'Post Pandas Episode Syndrome'. I pray I'm wrong but still want to get his CaM Kinase tested so I can stop worrying every time he wants to wear RED or eat something with a RED wrapper.

 

It helps that everyone is providing perspective.... I think my husband was looking at me like I was little NUTS this morning or maybe just expressing exhaustion from PANDAS overload.

 

-Wendy

[Kayanne]

I am so worried about this too...I have 3 out of 4 kids who had multiple (or the same) strep infections in the spring...only one DD6 had PANDAS symptoms, but a part of me is so concerned that there is a wide spectrum of behaviors for this, and when my DD8 was unusually emotional in the spring...I actually gave her one dose of motrin for two days, and I swear her crying improved!---She also was complaining about foot pain for months after, and still frequently says that her stomach hurts her....but I also was not religious about probiotics when we were all on the antibiotics in the spring...

 

My DS4 1/2 has been a horrible eater recently, and more emotional and belligerent too...and he wets the bed frequently early in the morning...but I can't get him to do the romberg stance long enough...also in one of Swedo's talks, I think she said that prior to 6/7 it is kind of normal to have piano fingers.

 

DH thinks I'm obsessed about PANDAS....he's right, but I really don't care...I want to help others on this forum the way I was and continue to be helped.

 

I just Cunninghamed my PANDAS daughter this morning...she was FABULOUS...about the blood flow thru the tube she said, "ooh...it looks like a rollercoaster!"

 

I asked Kathy A. to send me a spare kit...I told my DH that it was in case of another PANDAS episode, but a part of me is thinking of getting my son tested....but I would need DH to be on board...I'm trying to subtley plant seeds that he may have PANDAS

 

I keep thinking of the talk where Swedo says that with RF, there were families where all/most of the siblings got it, and right next door...nobody...so I'm scared that my other kids are not in the clear yet.

[thereishope]

I think getting the test done is the best thing. Otherwise every time he does something "odd" or PANDAS-like you will have a panic attack. And like others said, if the test comes back and indicates anything...you are catching it soon before real damage is done. Keep us updated.

 

 

Vickie, I agree and I think I've been so PANDAS HYPER aware that I'm over analyzing everyone's kid.... It might be that I'm just suffering from PPES 'Post Pandas Episode Syndrome'. I pray I'm wrong but still want to get his CaM Kinase tested so I can stop worrying every time he wants to wear RED or eat something with a RED wrapper.

 

It helps that everyone is providing perspective.... I think my husband was looking at me like I was little NUTS this morning or maybe just expressing exhaustion from PANDAS overload.

 

-Wendy

[EAMom]

Hey Kayanne...

in the future you can run 2 kids with 1 kit (just have Kathy fax a copy of the appropriate forms). Usually they put in 2 tubes of each kind (2 glass red top, and 2 plastic to put the serum in after its spun down), but you only really need 1 of each kind...so you can actually run 2 kids with 1 kit. Also, a big cost is the shipping (overnight)....so if you know in the future you might want to Cunningham extra kids, maybe you can ask Kathy to put a few extra tubes in so you can draw and mail them all at once in one box.