Over-reacting or does my daughter have it now?

[forjpj]

My ds10 has pandas, and now I'm wondering about my dd7, who I never would have guessed. They are so different in every way, figured they didn't share too many of the same genes!

Just really a mother's concern/paranoia, after watching my ds10 go through this, and knowing it is very common for it to affect more than one child in the family. I do not want to overlook possible red flags, no matter how small.

 

-Basically, since October, November dd7 has been easily frustrated, and can get pretty defiant. This has all been blamed on her extreme personality, watching her brother’s questionable behavior, and the stress in the house due to his illness. She went to live with my sister for 6 weeks while ds was extremely bad off, and this behavior was still present with maybe slight improvement. When she came home, after his plasmapheresis, these behaviors seemed to become less and less. A few weeks ago, these same behaviors started reappearing. Coincidentally, over the past few weeks, ds has regressed from 95% post-pex to about 75% due to strep exposure, and possible impetigo. The defiance is really where my ds first started having problems two Christmases ago in regards to this latest exacerbation.

 

-Also, there were a few weeks over the winter where I noticed she would go to the bathroom before bed, get in her bed, and then decide she had to go again. My sister also noticed this.

 

-There was also an occasion in the past few weeks where I noticed she was extremely rigid regarding how we studied her spelling words.

 

All little things, but then add them up to the fact that, my sister's two children...who my kids spend a lot of time with...are also being considered for pandas at this time. The first one, who we suspected had it after my son's diagnosis surfaced, has always had sensory issues, and separation anxiety. No big surprise! But the other, who just in the past week…hence my increased anxiety… has had several small spells resembling seizures, and a strep titer level of 1200. Since 3 out of the 4 cousins are demonstrating neurological reactions to strep, I really want to make sure I check dd. What do you think?

 

Her Aso is negative, AntiDna is 2, and her ESR-Westergren is 10 which is the cut off for abnormal. My ds never had abnormal tests except for celiac which was borderline.

 

Am I overreacting or do I have a case? Our doctor is Dr. L, so I don't want to worry her with this right now. Thinking I should just go ahead and fork out the money for the Cunningham test. Ugh...it never stops!!

Sarah

[tpotter]

I would (and have done) Cunningham's test. It was the only way to prove for sure that my ds17 had it (at 15), and, then again to rule out other stuff this year (we repeated it, and yes it was positive.) ASO and antiDNAseB are all normal for him, but CaMK is in the PANDAS range (and DS14 has more classic symptoms.)

 

Remember the cost is not as bad as it seems, because:

 

1) It's a donation (tax deductible)

 

2) Well worth (in my opinion) the peace of mind, AND helps the dr. know what to treat. The latter, alone could save you a lot of money trying other treatments or doing nothing, and waiting for it to get worse.

 

 

Your daughter may have been having problems pre-PEX, because maybe your son still had strep (carrying it around,) and it was affecting her.

[simplygina]

I'm doing the test for both of my boys.

 

My boys are also night & day. But I've been worried about my youngest for awhile now too. His behaviors are different, but still fall in line with PANDAS behaviors. We've always struggled with encopresis & enuresis with him & for years I would tell my husband how weird it was, and how totally emotionally draining it was for me that his brothers OCD issues were bad at the same time he was constantly having accidents. Nothing like having a germophobe living with a kid that is constantly pooping his pants! And lately, I've think I've noticed that the nights they decide to sleep in the same bed, they are both worse off.

 

This year in school my youngest, who is generally pretty laid back and very likable, has struggled with emotional volatility, defiance, & ADD type behaviors. And lately he has been worried more about germs than I am comfortable with. And I am seeing, off & on, something like looks like a tic to me. The hard part with him is that he is TOTALLY asymptomatic when he has strep. Add to that a pediatrician that already thinks I'm reaching for a diagnosis for my older son.

 

So I'm just going to have them both tested at the same time. I just want the numbers before I talk to a doctor about it. I guess I'm just avoiding the whole paranoid mother look so many doctors give without realizing it.

 

I wish I could reassure you, but there are so many people who have multiple children with it, I don't think the odds are in our favor I hope it's not!

[forjpj]

Thanks guys!! I feel more relaxed and focused!! Cunningham test kit is on the way. Cunningham test and then go from there!! That's the plan!! If anything we will catch it early, and if we our lucky, not progress to my son's non-functioning stage!! Now to go start prepping my daughter that she will need to have bloodwork again next week, and decide what I can bribe her with!! It was hard enough to get the strep titers blood draw out of here!!

[Stephanie2]

It was one year ago this month that the neuro suggested that my second child also had pandas! I almost fell over in the office (back then I did not know that there was a high likelihood of second child getting it, too). Anyway, I know how you feel and yes I do think you need to have your daughter checked. It sounds very likely that she has it. All I can say is that after you get over the initial shock/disappointment it is easier second time around b/c you already have the doctor and treatments lined up. Just a matter of going through the motions again (and dealing with 2 exacerbations at the same time, that part's not pretty). Good luck...

 

Stephanie

My ds10 has pandas, and now I'm wondering about my dd7, who I never would have guessed. They are so different in every way, figured they didn't share too many of the same genes!

Just really a mother's concern/paranoia, after watching my ds10 go through this, and knowing it is very common for it to affect more than one child in the family. I do not want to overlook possible red flags, no matter how small.

 

-Basically, since October, November dd7 has been easily frustrated, and can get pretty defiant. This has all been blamed on her extreme personality, watching her brother’s questionable behavior, and the stress in the house due to his illness. She went to live with my sister for 6 weeks while ds was extremely bad off, and this behavior was still present with maybe slight improvement. When she came home, after his plasmapheresis, these behaviors seemed to become less and less. A few weeks ago, these same behaviors started reappearing. Coincidentally, over the past few weeks, ds has regressed from 95% post-pex to about 75% due to strep exposure, and possible impetigo. The defiance is really where my ds first started having problems two Christmases ago in regards to this latest exacerbation.

 

-Also, there were a few weeks over the winter where I noticed she would go to the bathroom before bed, get in her bed, and then decide she had to go again. My sister also noticed this.

 

-There was also an occasion in the past few weeks where I noticed she was extremely rigid regarding how we studied her spelling words.

 

All little things, but then add them up to the fact that, my sister's two children...who my kids spend a lot of time with...are also being considered for pandas at this time. The first one, who we suspected had it after my son's diagnosis surfaced, has always had sensory issues, and separation anxiety. No big surprise! But the other, who just in the past week…hence my increased anxiety… has had several small spells resembling seizures, and a strep titer level of 1200. Since 3 out of the 4 cousins are demonstrating neurological reactions to strep, I really want to make sure I check dd. What do you think?

 

Her Aso is negative, AntiDna is 2, and her ESR-Westergren is 10 which is the cut off for abnormal. My ds never had abnormal tests except for celiac which was borderline.

 

Am I overreacting or do I have a case? Our doctor is Dr. L, so I don't want to worry her with this right now. Thinking I should just go ahead and fork out the money for the Cunningham test. Ugh...it never stops!!

Sarah

[Rowens1214]

I have been asking myself the same questions for 2 months now. I just got the cunningham test kit in the mail on Friday for my 15 year old and over the weekend have decided to order one for my 7 year old. the only sympton he is having are minor tics. My family thinks I am over reacting and dont "see" the tics. Its all i see which i hate but i cant ignore the throat clearing and spitting anymore. I was so hopeful that it was just allergies and would go away but its been 8 weeks now.. I guess i am wondering what numbers to expect in my younger son since he is doing well otherwise. He did get a strep test 4 weeks ago and it was negative. any thoughts on this?

[Fixit]

if i had to guess on my own experience....above normal mean but not way up....

and IMHO...it doesnt' matter ..it just gives more of a sense of validation for your brain to make you feel not crazy...

something is effecting him and it may take years, (until more of the medical community steps up) to find out what.

don't forget besides pits and pans there is celiacs, parasites, lymes, mandibualr/vestibular misalienment...etc.,blah, blah, blah

 

I have been asking myself the same questions for 2 months now. I just got the cunningham test kit in the mail on Friday for my 15 year old and over the weekend have decided to order one for my 7 year old. the only sympton he is having are minor tics. My family thinks I am over reacting and dont "see" the tics. Its all i see which i hate but i cant ignore the throat clearing and spitting anymore. I was so hopeful that it was just allergies and would go away but its been 8 weeks now.. I guess i am wondering what numbers to expect in my younger son since he is doing well otherwise. He did get a strep test 4 weeks ago and it was negative. any thoughts on this?

[EAMom]

-Also, there were a few weeks over the winter where I noticed she would go to the bathroom before bed, get in her bed, and then decide she had to go again. My sister also noticed this.

 

My Pandas dd did EXACTLY this for about 3 years. She would pee when getting ready for bed, brush teeth, get in bed, then get up to pee one more time. This started after of her (in retrospect) 1st PANDAS episode--urinary frequency at age 4.5 years and continued until 7.5 years when she had a full-blown anorexia nervosa/severe ocd/needed hosptalization episode. I don't know when it stopped...sometime at age 7.5 years when things got under control for her severe episodes/ after starting long term antibiotics/prozac. So, in hindsight, I suspect that it was a low grade PANDAS symptom that finally resolved with treatment.

[Stephanie2]

All I can say is that my family (including my husband at first) thought I was crazy when I decided that my 5 yo had pandas over a year ago. Then when it was clear that my 2 yo had it, they REALLY thought I was losing it! Now one year later they are both being treated and are better off (not perfect yet...). Listen to your gut and don't let your family stop you from moving forward. YOU gave birth to these babies and God gave YOU the mother's instinct. The rest of them can kiss it!!!

 

Stephanie

I have been asking myself the same questions for 2 months now. I just got the cunningham test kit in the mail on Friday for my 15 year old and over the weekend have decided to order one for my 7 year old. the only sympton he is having are minor tics. My family thinks I am over reacting and dont "see" the tics. Its all i see which i hate but i cant ignore the throat clearing and spitting anymore. I was so hopeful that it was just allergies and would go away but its been 8 weeks now.. I guess i am wondering what numbers to expect in my younger son since he is doing well otherwise. He did get a strep test 4 weeks ago and it was negative. any thoughts on this?

[forjpj]

Almost official...looks like I have another panda bear in the house!! Cam Kinase came yesterday...she is 142. Fortunately, no severe life-altering symptoms yet, just extreme emotions on occasion! Hopefully, we can get a handle on things before she gets too bad! We are up to 2 siblings now, and very likely 2 cousins too!!