did IVIG, pre-IVIG took Cam Kinase test

[fuelforall]

So ds 9 got his IVIG last thursday and Friday. Can't say I'm seeing anything but the same old kid at this point. I know DR K sez it could be a month so just wait. Others have had the same response here, I know. I just didn't think my son was a severe case and so I thought we might see something quickly... He does have igg deficiency and igg subclass 1 deficiency so this could be a factor. He has NEVER shown the rages I see described here or the OCD. When in his first attack last June, lots of tic activity, less now. Anyway.... plenty of bad symptoms of a sick child.

 

Had to freeze the blood because they didn't give me all the paperwork. Now I'm signing, hopefully we'll hear something

 

Michael

[sf_mom]

My son is 4 weeks 1 day post IVIG, 5 1/2 years old, possibly sick for the last 1 1/2 years, sudden onset of TICS/mild OCD was June 24th, 2009, prior to that he had cough/clearing of throat for one year........

 

Currently, he is symptomless. Initially, we saw a transition in TICS/hyper activity, uneven dilated pupils and mood liability that was manageable but all symptoms got better and better each week. About 10 days ago he complained of a sore throat but both rapid/culture were negative, we saw a flair in symptoms, both his brother and sister were sick.... I upped his antibiotic and within 48 hours he was symptomless again and has remained that way since. I hope to lower the dose again soon..

 

Our son shows deficiencies in 10 of 14 STREP PNEUMOCOCCAL ANTIBODY TITERs and still awaiting his subclass results 'blood drawn' pre IVIG. We will consider further IVIG if required.

 

I would contact Kathy, Kathy-Alvarez@ouhsc.edu directly regarding the CaM Kinase results. They've been very forthcoming with results but can take up to three weeks to receive them.

 

-Wendy

[fuelforall]

Initially, we saw a transition in TICS/hyper activity, uneven dilated pupils and mood liability that was manageable but all symptoms got better and better each week.

-Wendy

 

Hi, Wendy can you explain this part, the transition, what do you mean?

 

 

My son has never had strep. Our diagnosis is based on high dnase, etc numbers last year (which have gone down in subsequent tests) and a bad outburst last June where he went cuckoo, to summarize, with numerous symptoms affiliated with PANDAS. Brought him back to earth with an anti psychotic and has not had attacks since altho the corollary symptoms which include anger, silliness, sleep disorders, milder tics, etc continue.

 

Thanks.

[EAMom]

Our dd, if anything, seemed worse (mood) the first week after IVIG...after that she started to improve week by week. We had IVIG in early Aug.

[EAMom]

My son has never had strep.

 

At least not that you know about!

 

But don't you have to have strep to get a high dnsase b ?

[fuelforall]

My son has never had strep.

 

At least not that you know about!

 

But don't you have to have strep to get a high dnsase b ?

 

I don't know. Maybe he was exposed and reacting at the time. He never complains of sore throats. What do I know? I know I never had strep that I was aware of.

[sf_mom]

By transition, I mean the TICS were different after IVIG..... for example: instead of coughing or clearing his throat every three minutes he started blowing on the back of his hand. So, perhaps a new TIC but it seemed like he wanted to cough but didn't need to anymore so he just blew air.

 

 

 

Initially, we saw a transition in TICS/hyper activity, uneven dilated pupils and mood liability that was manageable but all symptoms got better and better each week.

-Wendy

 

Hi, Wendy can you explain this part, the transition, what do you mean?

 

 

My son has never had strep. Our diagnosis is based on high dnase, etc numbers last year (which have gone down in subsequent tests) and a bad outburst last June where he went cuckoo, to summarize, with numerous symptoms affiliated with PANDAS. Brought him back to earth with an anti psychotic and has not had attacks since altho the corollary symptoms which include anger, silliness, sleep disorders, milder tics, etc continue.

 

Thanks.

[EAMom]

Lots of pandas kids get strep without the sore throat, or not even any other symptoms (only behavior change). Neither of my kids had ever been tested for strep until we insisted in March 08 when we first learned about PANDAS. Whenever they had fevers it was always presumed viral, so no test. Anyway...both my kids were positive (younger on the rapid, older on throat culture). We think our younger dd tends to be an assymptomatic carrier...since we started checking her (b/c of strep notices in school, or her sister's behavior changing) she has been postive 4x over the past 2 years, always with no symptoms (no sore throat, no fever) herself.

 

We did give strep to our friends (sore throat, fever 3-4 days after sleepover at our house) 2 weeks before we were tested in March 08...that child did get classic symptoms. So, it is just that some kids don't get the classic red throat (or even fever etc) with strep.

[fuelforall]

Our dd, if anything, seemed worse (mood) the first week after IVIG...after that she started to improve week by week. We had IVIG in early Aug.

Exactly what I want to hear!

But don't worry, I won't hold you to it. All kids are different!

[fuelforall]

Lots of pandas kids get strep without the sore throat, or not even any other symptoms (only behavior change). Neither of my kids had ever been tested for strep until we insisted in March 08 when we first learned about PANDAS. Whenever they had fevers it was always presumed viral, so no test. Anyway...both my kids were positive (younger on the rapid, older on throat culture). We think our younger dd tends to be an assymptomatic carrier...since we started checking her (b/c of strep notices in school, or her sister's behavior changing) she has been postive 4x over the past 2 years, always with no symptoms (no sore throat, no fever) herself.

 

We did give strep to our friends (sore throat, fever 3-4 days after sleepover at our house) 2 weeks before we were tested in March 08...that child did get classic symptoms. So, it is just that some kids don't get the classic red throat (or even fever etc) with strep.

Wow, interesting.

Well, he never tested positive on throat cultures. I had one done last time he got sick but it was just allergies anyway. When he gets bad sinusitis, it's like he IS really sick. His IGE number is in the 1200 range, I believe normal range is 100-250 or so. We're working on that. Do you think I should get something other than throat cultures done?

[matis_mom]

My PANDAS son never tested possitive for strep or had any throat symptons. A stool analysis revealed strep in the gut. Watch out for any GI symptoms, or just not feeling well. My 5-yo (he is not the one with PANDAS) complained of just "not feeling well" off and on for about a week, until I finally took him in. He had strep. I guess we are all used to the throat ache, high fever thing, but it can present in other ways.

[EAMom]

Strep can also hide out in the sinuses...where it is difficult to culture. (I don't know how this is done). I know there are at least a couple of pandas kids (diana's son is one) who had evidence of sinusitis on MRI, neg throat cultures, elevated strep titers, and who's pandas symptoms responded to treatment for the sinusitis (azith etc)...but I don't know if you can actually culture the sinuses!

[fuelforall]

Hi,

I was really hoping to have some progress to report 10 days after treatment.

Sad to say, I have none.

 

They say younger kids (ds9) progress more quickly after IVIG

I can't say i see ANY improvement at all in any facet of his being.

I am sorry to have to report this. I understand when older kids struggle to recover but my son is nine.

I was REALLY expecting something to happen but as far as I can tell, nothing has.

 

My son does have a slight IGG deficiency. Not low side of normal, under the low side of normal.

And Subclass IGG 1 deficiency, same thing.

Could this be related to the lack of success so far? What are some of the first signs I should look for? I thought they were mood, behavior relatec.

 

What is my child like? Here goes:

 

Hyperactivity, verbal dispraxia, short-term memory loss, distractibility, oral language development issues, some repetitive behaviors, some mild OCD, skin rashes (red ears), recurring rhinitis, occasional constipation, anxiety, poor fine motor skills, social rigidity, vestibular issues, absence of motivation, squeaking/noises/tics, mild motor tics, allergies, low weight gain, difficulty working in groups, snorting, texture-sensitive with food/clothes, sensory integration disorder, swift mood changes, QUICK to anger (rage is usually throwing something and slamming doors, not the totally wigged out, out of control stuff I read about around here), pouches under eyes, organizational difficulties, no focus, bites lip, pulls hair, can’t sleep alone, HIS WAY OR THE HIGHWAY syndrome

 

So he still drives us pretty whacko, esp with that last point. That said, he functions socially and at school, though his work is poor. He does NOT get sick often, despite the reduced immunity issue.

 

Maybe it's just more than PANDAS.

 

Only bright spot: We are finally seeing some improvements treating his allergies/rhinitis. After 8 months.

 

I really needed to vent here. My one DAN doctor referred to my son as "a moving target." Nothing ever seems to take, no supplement, no med, nothing. He remains immune to treatment (allergy treatment not withstanding). Only thing that seemed to work was Abilify to snap him out of his one and only PANDAS exacerbation. Since then, it's done nothing. He has not had an exacerbation since but all the symptoms I list above remain.

 

Cam Kinase numbers to come some time in the near future.

 

Sigh.

[sf_mom]

Hang in there as it will get better. What dose/antibiotic is your child on? Potentially, try upping for 14 days to see if you witness improvement.

 

-Wendy

[fuelforall]

Hang in there as it will get better. What dose/antibiotic is your child on? Potentially, try upping for 14 days to see if you witness improvement.

 

-Wendy

 

 

My MD is very cautious with antibiotics. He treats a lot of PANDAS patients.

My son gets 250 mg Zith twice a week.

If I up it, I run out of drugs in a hurry and will it even help? A couple of times he was on antibiotics every day pre IVIG and it did nothing for him.

As you can see, this is my moving target son.

He does get probiotics but what argument precisely do I have for boosting antibiotics?

Michael