Tell me I'm wrong...

[qannie47]

Okay, you all know how well my Pandas ds has been doing. Sigh....

 

It's his twin. Age 8

 

Recently, an ACN friend has urged me to consider Pans for him.

 

My gut says NO. He just does not fit the profile. Pandas twin fit it to a T. But friend says you cant ignore DNA.

 

Profile: Age 3 exhibited profile that exactly fit ODD criteria. High defiance, rage, mean, annoyed easily. Hyper-sensory Issues. Mild ocd but manageable. Frequent urination/anxiety. Lactose sensitive/gluten sensitive.

 

No fears until last couple of months, now afraid of sleeping alone, going into rooms by himself...chalking it up to emotional milestone....???

 

Has not been sick.

 

Past fall started 5htp: Excellent response. Mood/focus/temperament greatly improved. However, seemed to build up in system after 12 weeks and abrupt anger. Stopped supplementing mid Feb.

 

As of Today: High ODD. High opposition: about to get kicked out of after school program. Daytime school working with me, but they are having a difficult time controlling him. HE IGNORES THEM. At home, highly negative, oppositional, crying a lot, anxious, stomach pain. (these are behaviors that I have not seen in 11 months).

 

I think I unfortunately have ODD on my hands. Not saying that it cant be handled from a nutritional/auto-immune perspective...

 

But what do you all think?????

Edited April 24, 2014 by qannie47

[3bmom]

I have to agree that you should check for infection. Sounds like he might of gotten sick a few months around the same time as fears set in. Now you are at a higher intensity hence he is ignoring authority at school. We have a lot of ODD with PANDAS. I think the opposition goes with the rigidity of some obsession or irrational thought.

 

For us the frequent urination is also a clue. How is his writing and math?

 

I am sorry to think this, but on the bright side eliminating ODD will make your life easier.

Edited April 24, 2014 by 3bmom

[nicklemama]

I would have him worked up and treated for PANS. I don't know what kinds of PANS behaviors your other child had but mine was very oppositional, angry, irritable, raging. He did manage to hold the worst of it in at school but not all PANS kids can. If it walks like a duck and it acts like a duck, maybe it is a duck......or in this case PANS.

[WorriedDADNMOM]

I would agree. My worst dd Pandas/Pans was very ODD for quite a few years before tic onset that brought us to Pandas diagnosis. She had unfounded fears, ODD, ADHD, very aspbergerish looking back.....but we had not a clue.....just our kiddo being herself.....needless to say it was very tough. For us this dd had adverse reaction back at 2 year MMR and we never made the connection till Pandas journey 3-4 years later when two docs asked about adverse reactions. Then the tic came out of nowhere, then more neurological choreaform movements, going mute....truly scary. After pandas treatment every thing is doing well. Other two dd's were different.......1 with strep and EBV became an anxious kid....like a light bulb on then off kinda reaction after treatment. 3rd dd became very ODD after 5yr MMR and possible strep infection at about 7 developed very minor nose twitch tic that we stopped in it's tracks.....had been down this road before.

 

Anyway, all three of our biological dd's presented very differently to vaccines and infections.....and at varying times and ages. In addition our kiddos all had milk issues as babies....again all three presenting differently.....oldest with eczema, middle with projectile vomiting and youngest with severe colic.

 

So yes, I encourage you to go down this road and investigate.

[Dedee]

I'm missing the part where this doesn't fit the PANS criteria. ODD, rage, high sensitivity, frequent urination, anxiety......Seriously, this fits my daughter to a T. Also, going to admit that as my third PANS child I had some denial going on as well with dd. You need to start trying to find an infectious source. I would bet something is hiding in there somewhere.

 

Dedee

[pr40]

why resists PANS diagnosis? symptoms fit, genes also. such diagnosis offers some hope and you know how do deal with it.

what would be your alternative diagnosis? bi-polar?

[ibcdbwc]

Quannie,

 

So many people have said to me, and I believe it to be true... It doesn't matter what we call it. We just need to find a way to help them. So peel the layers and see if there are some other treatment options that may help. We've thought for a long time now that ANY form of "mental" disorder has roots of biological predispostion. Combine that predispostion with any type of environmental trigger and boom.

[qannie47]

So the jury has spoken...I guess I was hung up on the difference that A)his twin's Pandas symptoms came overnight, like a bomb exploding. Pandas child was always cyclical, in between he was this sweet little peanut C)non child is always to some degree ODD D) non Pandas child also able to be manipulated 90% of the time with behavior mod tools E)Pandas child: in the grips of flare, God himself would not be able to manipulate him...things like this...

 

But you all make sense...I guess I just needed a shove...DNA carries weight, and I was hung up that it just did not look like Pandas...(at least in the way that I have experienced it). I do have him on list for Greenblatt whom is a psychiatrist, but has experience with Pandas/Pans/Methylation/gut issues/nutritional approach before he reaches for the script pad...hopefully June...

 

I do ascribe to the belief that mood disorders all have an organic base...

 

Thanks Guys/Gals

[pr40]

it does matter what we call it, or rather, it matters what doctors call it since treatment depends on what that. if drs call it bi-polar, drs would prescribe certain medication. if pans, other kind of medication. and so on

 

qannie -- I think that your twins represent PANS variants. there are several, as far as I can tell. I wish we had more understanding of those different profiles. Our children are not twins. both have PANS and one (ds) is like your second twin, the other (dd) like your first already diagnosed. We, too, thought that perhaps ds did not have PANS but then no other diagnosis fits as well. I assume, both kids are on the same diet. But the non-Pans twin is not on abx, right? how about supplements?

[SSS]

Are they identical twins?

I guess the whole DNA comment throws me a bit,

as I get defensive when these childhood epidemics

are labeled genetic.

 

The difference between my PANS dd (who I was told had ODD, incidentally)

and my other 2 non- PANS healthy children is literally night and day.

 

Can you do a trial of antibiotic and Motrin, recording any changes?

This helped us 'see' in the beginning (Treatment dose Azithromycin for a month, Motrin 2x a day, I think)

And ironically, helping me 'see' PANS again 4 years later on Biaxin.

 

For us personally with my beautiful PANS child, it has been a mixture of diagnosis and treatments in an earnest attempt to help.

I used to think: I fix the PANS, everything is 'normal.' It's up to me. I have to find the magic treatment choice.

And for some, thank God, that is true.

For us, there really does seem to be some overlap of whatever you would like to call it:

spectrum disorder, ODD, bipolar, ADD,

'something'.

But we trail a path forward the best we can.

[qannie47]

Similar diets, however non pandas twin is on limited dairy/gluten: gives him stomach issues. No, he is not on an abx. I have had him on probiotic for about 3 months: hoping that his gut issues can clear up and increased serotonin can be produced. The fact that he responded so well to 5htp gives me a clue...I have restarted that as of yesterday.

 

My concern about non/pandas child is that he WONT swallow pills....ugh

 

Yes, I now see that it would be stupid not to approach helping non-pandas child through a Pans approach. At least start looking into it...

 

As of yesterday, my Pandas child, whom has done SOOO well has cracked under the chronic stress that his brothers issues have brought to the entire household. His brother is taking out his current "state of being" on him. Pushing his buttons every time I leave the room. Simple things, but he knows it gets the job done. Pandas child had 5 meltdowns, BIG ones in the course of 30 minutes this morning. Apparently he had one at school yesterday as well. I am sure the stress has caused an autoimmune response...

 

Oh yeah, as of yesterday, my husband had to attend a meeting with after school program, (not same daytime school). IF ds gets one more write up, HE IS OUT. The chances of him not getting a write up??? Slim to none.

 

When it rains it pours I guess...

[3bmom]

Love how you say even God could not sway him...isnt that the truth! I know it isn't parenting style!

I would check for a new infection in the household or mold. Sometimes it is hard to know if the stress of PANDAS is rendering the house more dysfunctional or strep is around wreaking havoc. Vicious cycle!

[pr40]

swallowing: have you tried to give pills with apple sauce? not to hide a pill but to make it easier to swallow. take a bit of sauce in a tea-spoon, put a pill at the end of it, away from the tip of the spoon and he should not feel it at all.

 

genetics: when a condition is there, then you can trace it back and suggest the connection. it is, however, not prognostic, not in the case of pandas at least.

[WorriedDADNMOM]

qannie and 3bmom.......your kiddos sound exactly like my dd. No way to manipulate, discipline, entice, bribe......nothing and I mean nothing worked. I love the "God himself could not manipulate" quote is SO true.

[qannie47]

Thanks for all your input guys/gals. I will put on my detective hat.