Cummingham test pre-initial onset

[JAG10]

I'm wondering if anyone has had the Cunningham test on a younger sibling with "mild" PANDAS symptoms, but that child has not had THE sudden, debilitating explosion of symptoms yet prior to the 1st time tested?

 

I'm asking about younger siblings or cousins bcs I can't imagine someone else being so familiar that they would have this done or even know what it is.

 

It seems like mild and pandas would be a contradiction in terms, but if you've had an older, full-blown PANDAS kid, perhaps you can see the writing on the wall with younger ones or cousins that you know are already genetically predisposed, but have not had that initial WHAM episode.

 

If anyone fits this could you share the results?

Edited May 9, 2010 by JAG10

[EAMom]

I'm wondering if anyone has had the Cunningham test on a younger sibling with "mild" PANDAS symptoms, but that child has not had THE sudden, debilitating explosion of symptoms yet prior to the 1st time tested?

 

I'm asking about younger siblings or cousins bcs I can't imagine someone else being so familiar that they would have this done or even know what it is.

 

It seems like mild and pandas would be a contradiction in terms, but if you've had an older, full-blown PANDAS kid, perhaps you can see the writing on the wall with younger ones or cousins that you know are already genetically predisposed, but have not had that initial WHAM episode.

 

If anyone fits this could you share the results?

 

We tested our younger dd this past fall when she was 6.5 years. I refer to her as "my (hopefully) non-pandas child." I suspect she has "mild" PANDAS. She does have episodes of anxiety (worries about stuff, went through a phase where I had to make sure all the doors were locked at night, went through 1 mo. where she wouldn't eat meat, some emotional stuff., etc). So far, like you say, nothing is "WHAM" or definitive enough to get long term abs. Her CaM kinase ll came back as 130 (lower PANDAS range).

 

We're watching her closely...

[JAG10]

Thank you, EAMom. I have the same suspicions of my dd6, she'll be 7 next month. Similar observations, some anxiety/clinginess, some IBS-like complaints, some bathroom habit issues; but very bright, social and functional. Dr. T ran labs on her; her ASO=231, DNAse-B=960, equivocal myco-p; NO history of strep or myco-p, in fact, she hasn't been to her pediatrician for anything but her annual well-check in the past 3 years!

 

So, her labs were similar to my full-blown dd10's, only all less severe. I was thinking about running Cunningham's test on dd6, but one of the HIGHEST displays of anxiety I've EVER seen out of her was during the blood draw for the above mentioned labs- it was over the top, in the middle of the afternoon and knocked her out so she didn't wake up until the next morning!!

 

Diana had posted in response to my question about IVIG studies that Swedo has put together a study for response to IVIG that is being reviewed this summer, but it will only be for those with "initial onset." I'm wondering if (God forbid) our younger ones have the WHAM, if they would be considered candidates?

 

My older one had her big increase at 7:3. So, there is this annoying little voice in my head saying "tick-tock,tick-tock."

 

 

I'm wondering if anyone has had the Cunningham test on a younger sibling with "mild" PANDAS symptoms, but that child has not had THE sudden, debilitating explosion of symptoms yet prior to the 1st time tested?

 

I'm asking about younger siblings or cousins bcs I can't imagine someone else being so familiar that they would have this done or even know what it is.

 

It seems like mild and pandas would be a contradiction in terms, but if you've had an older, full-blown PANDAS kid, perhaps you can see the writing on the wall with younger ones or cousins that you know are already genetically predisposed, but have not had that initial WHAM episode.

 

If anyone fits this could you share the results?

 

We tested our younger dd this past fall when she was 6.5 years. I refer to her as "my (hopefully) non-pandas child." I suspect she has "mild" PANDAS. She does have episodes of anxiety (worries about stuff, went through a phase where I had to make sure all the doors were locked at night, went through 1 mo. where she wouldn't eat meat, some emotional stuff., etc). So far, like you say, nothing is "WHAM" or definitive enough to get long term abs. Her CaM kinase ll came back as 130 (lower PANDAS range).

 

We're watching her closely...

[EAMom]

Thank you, EAMom. I have the same suspicions of my dd6, she'll be 7 next month. Similar observations, some anxiety/clinginess, some IBS-like complaints, some bathroom habit issues; but very bright, social and functional. Dr. T ran labs on her; her ASO=231, DNAse-B=960, equivocal myco-p; NO history of strep or myco-p, in fact, she hasn't been to her pediatrician for anything but her annual well-check in the past 3 years!

 

Our younger is the one who was the assymptomactic carrier when we first learned of PANDAS. Since March 08, when we learned of PANDAS, she's tested positive several times...all assymptomatic (no fever, no sore throat).

 

I don't know about strep history b-4 March 08 b/c docs never tested our kids when they got fevers/other symptoms (now I realize they should have, we were always told it was viral w/out a strep test being done). Neither of my kids get the classic red sore throat typically associated with strep.

Edited May 9, 2010 by EAMom

[dut]

Hi- Our ds had just turned 2 when we did the cunningham test on him. He had a CaMK score of 151% and his anti lysoganglioside was elevated (normal <320 his was 640).

 

His sister 6 has PAND(AS?). She is very classic in her presentation - sudden onset with OCD (primarily), behaviour , sensory, sleep and cognition issues, some ticcing and some choreiform movements. Good ressponse to abx and steroids and full remission between episodes.

 

We had our ds2 tested 'cos I'd seen some soft signs such as super lively, more defiance than normal for a 2 year old, TERRIBLE sleep, some word repeating, sensory issues etc.

 

We followed the test with a steroid burst and saw an improvement in behaviour and a marked improvement in sleep.

 

Even after this I still wasn't totally convinced but now I feel sure that he has PANDAS.

 

Recently he started stuttering. On the back of a mild flare in symptoms in my dd6, both children had a course of zith (they are both on twice weekly proph zith). My ds2's stuttering stopped dead on day 3 of the abx and stayed stopped for 4 weeks and has only returned minimally this last week, at the same time as he has developed a cold. Also during that 4 week period my normally somewhat tricky to parent son has been a toddler dream :-) His behaviour tanked a bit this week but seems to be righting itself again.

 

If it hadn't been for our dd, our ds would have totally gone under the radar. I believe his onsets have been as sudden as our dd's just not as severe but only not as severe 'cos we have got on top of it early. I suspect that all kids have an original sudden onset just some of those onsets will be mild and so early in development that parents either write it off to normal little kid stuff or just their child's personality.

 

I now firmly believe his 1st episode was at 7 months. This was during our dd's 1st recognised episode. He, overnight, went from happy to be left propped and playing to uber sepration anxiety. I couldn't be out of site or many steps away at all. I put it down to normal developmentally appropriate seperation anxiety. At the time, I thought it was fairly sudden and severe but reckoned it had been spurred by the attention his sis was getting. Now being able to track this and other behaviour changes with time and illness, I know better..

 

I don't think "mild" and "PANDAS" is a contradiction at all... it's just that the bad cases are those that get recognised. How many children are getting written off as bad, difficult or naughty when really they're just ill?

[JAG10]

Good point! Neither of mine show classic symptoms. For my older one, I thought it may be due to the fact she had a T & A at 5 y.o, but younger sister still has her tonsils and still no typical symptoms.

 

Can you think of anything I could do to make the blood draw a less traumatic experience? That is what really is making me hesitate.

[Ellen]

EAMom, I'm curious to know if your younger dd is on prophylactic antibiotics to prevent strep. My PANDAS son is doing very well but not completely symptom free after IVIG (1.5 gm per kilo) in February and then again at the same dose in April. There have been some great improvements in most areas and he considers himself to be "almost better". My DS10, the one I've considered to be my "hopefully non-PANDAS son," has over the years had mild tics that come and go, mild OCD that does not interfere with his life, urinary issues, constipation, chronic leg and foot pain, major allergies, history of frequent sinus infections and some anxiety. He is a high achiever and functions very well in school and home, but at the beginning of this week we saw a return of a throat clearing tic, some anxiety issues, and a definite increase in urinary frequency issues, which is a symptom that my older son never experienced. A few days later DS10 came down a high fever and sore throat. His culture was positive for strep and the ped agreed to give him a month of treatment dose Omnicef because of his brother's PANDAS and his possible mild PANDAS. I will do the Cunnningham test and an immune workup on DS 10, and I am considering prophylactic antbiotics after that if Cunningham results are high. He is the same age as his brother was when he had the strep episode that turned our lives upside down so this is scary for me. Any thoughts?

 

Ellen

 

I'm wondering if anyone has had the Cunningham test on a younger sibling with "mild" PANDAS symptoms, but that child has not had THE sudden, debilitating explosion of symptoms yet prior to the 1st time tested?

 

I'm asking about younger siblings or cousins bcs I can't imagine someone else being so familiar that they would have this done or even know what it is.

 

It seems like mild and pandas would be a contradiction in terms, but if you've had an older, full-blown PANDAS kid, perhaps you can see the writing on the wall with younger ones or cousins that you know are already genetically predisposed, but have not had that initial WHAM episode.

 

If anyone fits this could you share the results?

 

We tested our younger dd this past fall when she was 6.5 years. I refer to her as "my (hopefully) non-pandas child." I suspect she has "mild" PANDAS. She does have episodes of anxiety (worries about stuff, went through a phase where I had to make sure all the doors were locked at night, went through 1 mo. where she wouldn't eat meat, some emotional stuff., etc). So far, like you say, nothing is "WHAM" or definitive enough to get long term abs. Her CaM kinase ll came back as 130 (lower PANDAS range).

 

We're watching her closely...

[JAG10]

What I meant was mild and PANDAS are a contradiction if you hold faithful to Swedo's criteria and not the larger net those of us who live this cast.

[dut]

Oh, absolutely.

 

I think as a group of parents and now also the drs, we're seeing that the PANDAS net is huge. I mentioned the stuttering issue to Dr T who said that a number of parents had seen this issue and I believe some saw improvement or it stopped with abx and also he has had similar reports from speech paths. I think that is just 1 of very many different ways that it can manifest itself.

 

The original Swedo criteria is IMHO only a narrow description of PANDAS. I imagine we'll see that it can be the whole spectrum from mild to extremely severe and will embrace many manifestations.

[sf_mom]

DS1 - 6 years old: CaM Kinase 127 - 11 days post 5 day steroid burst, PANDAS

 

DS2 - Almost 3 years old: CaM Kinase 148

 

DD - Almost 3 years old: CaM Kinase 157

 

We did test our twins immune systems and they are showing all kinds of deficiencies in their Iggs and strep pneumo's as well as high lymphocytes, low WBC, Low RBC, etc. Because they were two when we realized they might be PANDAS its been hard to tell clinical presentation although we had some very concerning behaviors. We have since put them on antibiotics and we've seen hugh improvement in rashes, rages, separation anxiety, hitting, biting, mood liability, speech, etc.

 

My husband also has high titers and is being treated. I did not have positive titers. We obviously had a strep issue in our household and have seen great improvement in our older DS since everyone has been treated.

 

-Wendy

Edited May 10, 2010 by SF Mom

[EAMom]

Oh, absolutely.

 

I think as a group of parents and now also the drs, we're seeing that the PANDAS net is huge. I mentioned the stuttering issue to Dr T who said that a number of parents had seen this issue and I believe some saw improvement or it stopped with abx and also he has had similar reports from speech paths. I think that is just 1 of very many different ways that it can manifest itself.

 

The original Swedo criteria is IMHO only a narrow description of PANDAS. I imagine we'll see that it can be the whole spectrum from mild to extremely severe and will embrace many manifestations.

 

agreed.

 

I also believe that there are kids with strictly mood issues, anxiety, or ADHD (or other diagnosis) but no obvious tics/ocd that have pandas.

[EAMom]

If it hadn't been for our dd, our ds would have totally gone under the radar. I believe his onsets have been as sudden as our dd's just not as severe but only not as severe 'cos we have got on top of it early. I suspect that all kids have an original sudden onset just some of those onsets will be mild and so early in development that parents either write it off to normal little kid stuff or just their child's personality.

 

I now firmly believe his 1st episode was at 7 months. This was during our dd's 1st recognised episode. He, overnight, went from happy to be left propped and playing to uber sepration anxiety. I couldn't be out of site or many steps away at all. I put it down to normal developmentally appropriate seperation anxiety. At the time, I thought it was fairly sudden and severe but reckoned it had been spurred by the attention his sis was getting. Now being able to track this and other behaviour changes with time and illness, I know better..

 

I don't think "mild" and "PANDAS" is a contradiction at all... it's just that the bad cases are those that get recognised. How many children are getting written off as bad, difficult or naughty when really they're just ill?

 

I completely agree.

[EAMom]

Hi Ellen,

 

we requested antibiotics for younger dd last year...and our ped declined (however, this was the same one that suggested we do a T&A on younger dd...which I didn't think would be as effective and WAY more invasive).

 

Right now younger dd had a FEVER last week and now has some possible behavior issues. I'll bring her in for a throat culture Mon. or Tues...if it's positive maybe I can make my case again.

[saidie10]

This is an interesting topic because we are convinced we need to not only be focused on figuring out what is going on with DS7, but also now DS5. He was psychotic yesterday. I gave him motrin this morning as recommended by a few on this forum and seemed to have a better day but later in the early afternoon he had a meltdown in front of some family. Of course after he left the room they had to put in their two cents about what we need to do to discipline, etc. They just don't understand, nobody understands. A quote from this thread..."How many children are getting written off as bad, difficult or naughty when really they're just ill?" I truly think my DS can not help the extreme behavior we have seen in the last few days! Problem is he has always been my temper tantrum thrower so to everyone else, this is nothing new. But to me...his Mom, who knows him better than anyone else, he is suffering just like his brother is and these extreme outbursts are just like his brothers last year that everyone was very sensitive too because he was the kid that never threw tantrums to he definitely must be sick. Anyway, I couldn't agree more that Mom knows best and if you suspect another child, cousin, etc, get them tested!

 

Good luck!

 

Oh, absolutely.

 

I think as a group of parents and now also the drs, we're seeing that the PANDAS net is huge. I mentioned the stuttering issue to Dr T who said that a number of parents had seen this issue and I believe some saw improvement or it stopped with abx and also he has had similar reports from speech paths. I think that is just 1 of very many different ways that it can manifest itself.

 

The original Swedo criteria is IMHO only a narrow description of PANDAS. I imagine we'll see that it can be the whole spectrum from mild to extremely severe and will embrace many manifestations.

 

agreed.

 

I also believe that there are kids with strictly mood issues, anxiety, or ADHD (or other diagnosis) but no obvious tics/ocd that have pandas.

[matis_mom]

This is an interesting topic because we are convinced we need to not only be focused on figuring out what is going on with DS7, but also now DS5. He was psychotic yesterday. I gave him motrin this morning as recommended by a few on this forum and seemed to have a better day but later in the early afternoon he had a meltdown in front of some family. Of course after he left the room they had to put in their two cents about what we need to do to discipline, etc. They just don't understand, nobody understands. A quote from this thread..."How many children are getting written off as bad, difficult or naughty when really they're just ill?" I truly think my DS can not help the extreme behavior we have seen in the last few days! Problem is he has always been my temper tantrum thrower so to everyone else, this is nothing new. But to me...his Mom, who knows him better than anyone else, he is suffering just like his brother is and these extreme outbursts are just like his brothers last year that everyone was very sensitive too because he was the kid that never threw tantrums to he definitely must be sick. Anyway, I couldn't agree more that Mom knows best and if you suspect another child, cousin, etc, get them tested!

 

Good luck!

 

Oh, absolutely.

 

I think as a group of parents and now also the drs, we're seeing that the PANDAS net is huge. I mentioned the stuttering issue to Dr T who said that a number of parents had seen this issue and I believe some saw improvement or it stopped with abx and also he has had similar reports from speech paths. I think that is just 1 of very many different ways that it can manifest itself.

 

The original Swedo criteria is IMHO only a narrow description of PANDAS. I imagine we'll see that it can be the whole spectrum from mild to extremely severe and will embrace many manifestations.

 

agreed.

 

I also believe that there are kids with strictly mood issues, anxiety, or ADHD (or other diagnosis) but no obvious tics/ocd that have pandas.

Rats! Now I am more worried about dd9. She has been very emotional/crying over everything since the last bout of strep. She also has been doing the excesive whiping thing, and is "worried about the future", "scared of monsters", etc. I asked our neourologist who is treating ds12, and she said "ask them to continue the abxs". The problem is I don't think the pediatrician will go for it... And forking out $400 for the Cunningham test is not an option right now. I am just going to concentrate on keeping everyone healthy and see how ds12 does after plasmapheresis (hopefully in August). I pushed it back to August to make sure there is no strep around.

Maybe I'll do ibuprofen for my dd9 a few days and see if that does anything for her moods... how much would y'all give for a 50 pounder (yes, she's very light!)

I'm so sick of this!!!

 

Isabel