Need help with understanding blood tests

[momtocole1]

My dr. ordered quite a few tests for my son and I think he ordered some that were not accurate for strep/pandas. He is not very knowledgeable about PANDAS and charges me $175 (cash) every time I go in, because he is a DAN doctor.

 

We have a phone consult with Dr. K coming up next week, but I wanted to see if anyone here understood these results.

 

Results:

Anti-Dnase B Strep Antibodies was: 1:120

The comments say:

Preschool child should be < 1:60

School Child <1:170

Adult <1 :85

 

My son is 12 years old and is in 6th grade.

It seems that he is on the low end of this test for his age. What is confusing is I thought it would be a whole number not a ratio.

 

The next one is HHV-6, IgG Antibodies, Quant

 

Results:

1:80

 

The comments say:

Negative = 1:20

 

Equivocal = 1:20 - 1:80

 

Positive = >1:160

 

 

Seroology ASO was negative, no number given

 

IgA was 118 rage was 53-204

 

IgE was 59 range was 1 - 183

 

igM was 53 range was 31 - 179

 

Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004

 

Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines)

 

I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right?

 

So confused....

 

Thanks, Judy...

[momtocole1]

I think that I did not get the right blood tests, because nobody has replied to this post. I am so confused. I'm sure consult with Dr. K will help.

 

Could others share their anti-dnase b strep blood test results from their kids?

Thanks

 

 

My dr. ordered quite a few tests for my son and I think he ordered some that were not accurate for strep/pandas. He is not very knowledgeable about PANDAS and charges me $175 (cash) every time I go in, because he is a DAN doctor.

 

We have a phone consult with Dr. K coming up next week, but I wanted to see if anyone here understood these results.

 

Results:

Anti-Dnase B Strep Antibodies was: 1:120

The comments say:

Preschool child should be < 1:60

School Child <1:170

Adult <1 :85

 

My son is 12 years old and is in 6th grade.

It seems that he is on the low end of this test for his age. What is confusing is I thought it would be a whole number not a ratio.

 

The next one is HHV-6, IgG Antibodies, Quant

 

Results:

1:80

 

The comments say:

Negative = 1:20

 

Equivocal = 1:20 - 1:80

 

Positive = >1:160

 

 

Seroology ASO was negative, no number given

 

IgA was 118 rage was 53-204

 

IgE was 59 range was 1 - 183

 

igM was 53 range was 31 - 179

 

Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004

 

Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines)

 

I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right?

 

So confused....

 

Thanks, Judy...

[dut]

Hello

 

We had ASO and antiDNase B done 2 times during episodes. Both times came back negative. We also did the IgA, IgM etc and all of those came back normal (except an elevated IgG subclass) but we still came back firmly within the PANDAS range on the Cunningham test. Not all PANDAS kids have Ig deficiences (well, not us anyway) and many get negative ASO and antiDNase B. The other test HHV-6 is testing for human herpes virus 6.. do you know why the dr did this one? Was the Dr checking immune response, as supposedly, 100% of kids have been exposed to this by age 3.... dunno

[coco]

Hi Judy,

 

It's a little difficult to give you an assessment and many labs have different numbers and norms. It really does take a good immunologist to interpret the results and explain how those numbers affect your child. I know it is very frustrating and we all get better deciphering those numbers as time passes. sigh. With that said, my dd's numbers were: ASO titers 295, and the norm should have been 170 or less. The DNASE was 960 and should have been below 200. Her CamK was 188. She also failed the tetnus, and 13 or 14 pneumo strep serotypes. Also failed 2 or the 4 IGGs. I hope that gives you bit of a perspective.

[peglem]

I think that I did not get the right blood tests, because nobody has replied to this post. I am so confused. I'm sure consult with Dr. K will help.

 

Could others share their anti-dnase b strep blood test results from their kids?

Thanks

 

 

My dr. ordered quite a few tests for my son and I think he ordered some that were not accurate for strep/pandas. He is not very knowledgeable about PANDAS and charges me $175 (cash) every time I go in, because he is a DAN doctor.

 

We have a phone consult with Dr. K coming up next week, but I wanted to see if anyone here understood these results.

 

Results:

Anti-Dnase B Strep Antibodies was: 1:120

The comments say:

Preschool child should be < 1:60

School Child <1:170

Adult <1 :85

 

My son is 12 years old and is in 6th grade.

It seems that he is on the low end of this test for his age. What is confusing is I thought it would be a whole number not a ratio.

 

The next one is HHV-6, IgG Antibodies, Quant

 

Results:

1:80

 

The comments say:

Negative = 1:20

 

Equivocal = 1:20 - 1:80

 

Positive = >1:160

 

 

Seroology ASO was negative, no number given

 

IgA was 118 rage was 53-204

 

IgE was 59 range was 1 - 183

 

igM was 53 range was 31 - 179

 

Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004

 

Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines)

 

I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right?

 

So confused....

 

Thanks, Judy...

Sorry for not responding earlier. I'm not much of an expert when it comes to interpreting blood work. What I usually do is search the internet for anything that comes up out of range for my daughter....BUT, I don't think any of these things have much to do w/ whether or not your child has PANDAS. The immune stuff (so far) does not seem to indicate an immune deficiency, but I'd want to get the IgG subclasses tested because even if the total IgG is in range (wait a minute, did they even check IgG?) the subclass levels could be skewed- very high in one, deficient in another.

A tiny bit of info because I don't know much) on the Ig's you did have tested- IgA is the antibody most prevalent on mucosal surfaces- respiratory tract, stomach/intestinal lining, eyes, etc.

IgE is the one associated with allergy.

I don't know about IgM because my daughter always tested normal range in that.

 

The ASO and AntiDnase titers can only confirm a past strep infection, NOT rule it out.

The Cunningham test, although it is in the study only phase, is the only one I know that can give you an indication of whether it is truly PANDAS or not. Other than that, it is a purely clinical diagnosis- behaviors temporally associated with strep, improvement with abx and steroids- this is one of the reasons we have been so excited about the mouse model and Cunningham's work...getting a clear, biological marker will make it sooo much easier to get diagnosed and treated.

[momtocole1]

Hello

 

We had ASO and antiDNase B done 2 times during episodes. Both times came back negative. We also did the IgA, IgM etc and all of those came back normal (except an elevated IgG subclass) but we still came back firmly within the PANDAS range on the Cunningham test. Not all PANDAS kids have Ig deficiences (well, not us anyway) and many get negative ASO and antiDNase B. The other test HHV-6 is testing for human herpes virus 6.. do you know why the dr did this one? Was the Dr checking immune response, as supposedly, 100% of kids have been exposed to this by age 3.... dunno

 

 

I don't know why the doctor ordered the HHV-6 test, he is a DAN doct. He may have done this because he keeps getting impetigo infections on corners of his mouth. It is usually an indicator that a strep infection is coming. But, now with all that I have learned about PANDAS I am wondering if he gets the sore do to a virus and then because he keeps cracking open the sore and licking it and touching it, that he then gets a strep infection?

 

The doctor is not very knowledgeable at all about PANDAS even though his own son has PANDAS. The reason that he hasn't really studied it is because his son has very severe autism and he is focused on that. He is also not currently showing significant OCD symptoms.

 

 

Thank you for responding...

[peglem]

The reason that he hasn't really studied it is because his son has very severe autism and he is focused on that

 

My child has severe autism and I think it was CAUSED by the PANDAS! I think he needs to take a closer look at that!

[momtocole1]

Hi Judy,

 

It's a little difficult to give you an assessment and many labs have different numbers and norms. It really does take a good immunologist to interpret the results and explain how those numbers affect your child. I know it is very frustrating and we all get better deciphering those numbers as time passes. sigh. With that said, my dd's numbers were: ASO titers 295, and the norm should have been 170 or less. The DNASE was 960 and should have been below 200. Her CamK was 188. She also failed the tetnus, and 13 or 14 pneumo strep serotypes. Also failed 2 or the 4 IGGs. I hope that gives you bit of a perspective.

 

Dear Coco,

 

My son failed 6 of the 7 strep pnuemo strep serotypes. He is older than your daughter I think, he is 12 next month. Back in 1997 when he was born they were only vaccinating for 7 strep strains.

 

Can I ask if you did IVIG for your daughter? There is another mom on the board who has a son or daughter that gets monthly IVIGs because of this and they have all been covered by insurance.

 

Thanks,

 

Judy...

[coco]

Hi Judy,

 

It's a little difficult to give you an assessment and many labs have different numbers and norms. It really does take a good immunologist to interpret the results and explain how those numbers affect your child. I know it is very frustrating and we all get better deciphering those numbers as time passes. sigh. With that said, my dd's numbers were: ASO titers 295, and the norm should have been 170 or less. The DNASE was 960 and should have been below 200. Her CamK was 188. She also failed the tetnus, and 13 or 14 pneumo strep serotypes. Also failed 2 or the 4 IGGs. I hope that gives you bit of a perspective.

 

We have done ivig with dr k in chicago in august. we just did another 10 days ago and will be doing monthly for the next 5 months. Insurance is covering 80% beacuse she has SAID in additional to pandas. We got some really good bounce from the first one, many things got a lot better, but others are very stubborn...questioning rituals, and some, but much reduced oppositional defiant. Much of the vocal tics and compulsions are 80% better, but we still have night incontinence. Anxiety is lessened, but we still have a ways to go on that. I could go on. She's had this for most-likely 7 years, so I don't know what to expect in terms of a full recovery. We are just pleased the dial is moving, and that gives us hope for future changes.

 

She caught a cold several days before we did the second ivig, and I have yet to see any changes as a result of that. In fact, we backslid to a point I thought it was all coming back. Right now she is over the cold and we are back to where we were before she got sick.

[Buster]

Hi MomtoCole1:

 

When was last round of exacerbations? What were they, were they severe, are you already on any antibiotics?

 

 

From what you wrote, the AntiDNAseB, ASO and HHV6 tests would not be considered positive. You can read more about AntiDNAseB and ASO at http://www.latitudes.org/forums/index.php?...amp;#entry25312

 

Has your child a positive throat culture in last 3 months or other signs of HHV (such as Roseola)?

 

Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004

So do you see a significant ramp of symptoms and a remission of symptoms over a 4-6 week period? Has he had significant ramp in symptoms associated with the numerous strep infections?

 

Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines)

There's debate about whether unchallenged serum is sufficient for testing PREVNAR. It has probably been some time (6+ years) since his last vaccination. I'm not sure what to do with the PREVNAR test. Our immunologist felt it wasn't a useful test in the absence of a challenge (i.e., recent revacination). We have no desire to revacinate.

 

I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right?

 

Well, PANDAS doesn't have anything to do with ASO or with AntiDNAse-B values. While some of us on this forum have found the PREVNAR results interesting, we don't have (and neither does the world health organization) good data on what are the typical values in the population 6+ years post vaccination. So those results don't tell you much. Your IgG values look good and at least indicate he's doesn't have something else going on.

 

What are your child's symptoms? How long do they last?

 

regards,

 

Buster

[momtocole1]

Hi MomtoCole1:

 

When was last round of exacerbations? What were they, were they severe, are you already on any antibiotics?

 

In April of this year OCD started to really increase. I finally found a doctor that was willing to try prophylactic antibiotics. We stayed on them until July and his stomach was very upset. OCD symptoms had settled down and were not as bad so I decided to take him off the Zithromax. That was a huge mistake.

In mid August my son had a huge downward spiral his OCD was worse than it had ever been. He had no symptoms of a sore throat. I took him to doctor anyway and rapid and culture were negative. I did not even think to put him back on the antibiotic. I know that must sound very strange but it was before I knew all that I know now that strep can be somewhere else in the body.

 

We had started working with a behaviorist and he had me totally convinced that all of my sons actions were behavioral in nature. He acknowledged the OCD somewhat but kept thinking that he could treat it with behavioral interventions. This was another huge mistake. My son was under so much stress, being pushed to do things that he was just not comfortable with. He had a big backslide. Stopped going outside, starting retracing all of his steps. It started to consume all areas of his life. We went to two different psychologists that tried to do ERP. It was useless, he was just under too much stress and was too afraid to stop the rituals.

 

 

In late August I decided to put him back on the Zithromax, all on my own. Our ped. had such little knowledge of PANDAS. I saw a little bit of improvement on OCD, very small, then boom, I think he got another strep infection. Rapid and culture were negative but his throat was very red and sore and he was doing all kinds of new tics, having rages. It was the worst I have ever seen him.

 

 

From what you wrote, the AntiDNAseB, ASO and HHV6 tests would not be considered positive. You can read more about AntiDNAseB and ASO at http://www.latitudes.org/forums/index.php?...amp;#entry25312

 

I will read more on this via this link, thx

 

Has your child a positive throat culture in last 3 months or other signs of HHV (such as Roseola)?

 

No positive strep throat culture in last three months, but my ped thinks it would not have shown positive because he was on the Zith.? Does that sound right? He did have a huge impetigo sore that came up again on edge of his mouth. He is very prone to those and I went back through all his medical records and I cannot believe how many times he has had those sores and how they correlated with an exacerbation in his OCD tic symptoms or a positive strep test.

 

Clinically was diagnosed with PANDAS he has had many step infections and had a rapid onset of OCD/tics with his first infection in 2004

So do you see a significant ramp of symptoms and a remission of symptoms over a 4-6 week period? Has he had significant ramp in symptoms associated with the numerous strep infections?

 

Strep Pneumanie blood test came back with him failing 6 of 7 strep strains (vaccines)

There's debate about whether unchallenged serum is sufficient for testing PREVNAR. It has probably been some time (6+ years) since his last vaccination. I'm not sure what to do with the PREVNAR test. Our immunologist felt it wasn't a useful test in the absence of a challenge (i.e., recent revacination). We have no desire to revacinate.

 

My son is 12 so it has been a long time since his vaccinations. I am with you, no desire to revaccinate.

 

I know I should be more patient, we are waiting for Dr. Cunninghams Cam Kinaise results too. I am just so anxious to get him in for IVIG, but according to these ranges he doesn't even look like he has PANDAS right?

 

Well, PANDAS doesn't have anything to do with ASO or with AntiDNAse-B values. While some of us on this forum have found the PREVNAR results interesting, we don't have (and neither does the world health organization) good data on what are the typical values in the population 6+ years post vaccination. So those results don't tell you much. Your IgG values look good and at least indicate he's doesn't have something else going on.

 

I was actually hoping that the immunologist that we are going to see at UC Irvine on November 4th would see the failing of the strep pneumo vaccines as an indicator that there is an immune issue. We are trying to get IVIG and to get it covered by insurance. My son is 118 pounds so it will be about 12K to get IVIG for him. We don't have the funds...

 

What are your child's symptoms? How long do they last?

 

Symptoms were, constant retracing of steps, retouching items, fear of anything with an X on it, certain food aversions fear of anything with the number six on it or 12 because that is 2 times 6, or 42, four and two make six. He went to a very phonatical (sp) Christian school last year and he developed scrupulosity symptoms. The OCD got so bad this summer we had to pull him out of the school. If I kiss his cheek, I then have to go back and kiss the other one.

If anyone touches his food, he has to throw it out. All doors and windows must remain closed most of the time. Turning faucets and shower off and on 5 times. Refusing to bathe, difficulty getting him to change clothes. The list is so endless, it really consumed all of his existence and it had NEVER been this severe before.

 

We started Augmentin about 4 weeks ago because I read the Saving Sammy book and I thought that he had built up a resistance to the Zith. He was on a lower dose, one calculated by his weight and I started to see a little improvement, when I went back to look at my notes I realized that he really still had so many OCD symptoms it was just that the intensity of his rages and the frenetic way that he would run around a retrace had settled down a little bit. Then boom, he backslid again and the OCD behaviors went haywire. I started the saving sammy dose about two weeks ago and we have seen improvement every day.

 

OCD is still there, but he went from one day not being able to get out of the car to go to school to walking in the door the next day with no retracing. His rages are fewer and farther between with less overall intensity and duration.

 

It is like he is on rewind with symptoms. Started to do some of his old tics from a long time ago , i.e. chewing on shirt.

 

He has actually been joking with me, more playful. Playing pranks, etc, which he not done for years.

 

He went outside for the first time in about 4 months last week. He rode his bike for the first time this week.

 

We are seeing some definite improvement, but he is still retracing and doing other, new OCD things here and there.

 

I started new probiotic and I think we are seeing some yeast die off reactions possibly.

 

Since starting new higher dose of Augmentin he does not want to eat very often. I have to force him to sometimes so he can take Augmentin.

 

We talk to Dr. K. next week and we mailed off blood work for Cam Kinaise last week to Univ. of OK. Then Immunologist appt.

 

Thank you for all your insight. Do you have a child with PANDAS or are you a doctor that helps on this post?

 

 

Thanks,

 

Judy...

regards,

 

Buster

[Buster]

So your history is:

• pre April -- minor OCD symptoms and chewing of shirt
  
• April->July, significant OCD symptoms but upset stomach on Zithromax
  
• August -- off zithromax
  
• late August -> end of Sept -- back on zith and tried CBT and ERP, no effect
  
• end of Sept -> mid October -- tried theraputic dose of Augmentin
  
• mid Oct -> now -- using high dose Augmentin (> 800+mg/day)
  

Currently seeing some improvement on high dose Augmentin (rode bike for first time this week), but also seeing some emergence of old symptoms (chewing shirt, tics, etc).

 

What I found most interesting in your post was about Impetigo.

 

A few things that might be relevant:

1. Impetigo is typically caused by either GABHS or staphylococcus aureus. Unfortunately, it is hard to get a good culture of impetigo, but the next time he gets a sore, get it cultured and ask them to check whether it is GABHS or Staph.
   
2. If it is strep, then ASO is likely meaningless because skin strep does not produce an ASO response.
   
3. If it is staphylococcus, it's unlikely that oral antibiotics on their own will be sufficient. This would be good to talk with your doctor, but my understanding is that Azithromycin is less useful on staphylococcus.
   
4. Have you tried mupirocin (Bactroban) on the sore. This is a good topical antibiotic particularly for impetigo.
   

From the symptoms, this sure sound like intense OCD and I can imagine the stress he and you are going through.

Do you have a child with PANDAS or are you a doctor that helps on this post?

 

Yes, I have a child with PANDAS and no I'm not a doctor. Our dd9 had severe OCD symtpoms including requirements about how people went through doorways, ritualistic questioning and culminating in hospitalization when her obsessions prevented her from eating.

 

At this point, I do think the Cunningham tests are likely going to give you the most answers (depite them being a research study). I can see why with the intensity that you are considering IVIG. We ended up going that route as well.

 

Wishing you the best,

 

Buster

[T_Mom]

Judy--

I am so sorry your son has been going through this--I have to say, the following part of your post just hit me--

 

"I started the saving sammy dose about two weeks ago and we have seen improvement every day.

OCD is still there, but he went from one day not being able to get out of the car to go to school to walking in the door the next day with no retracing. His rages are fewer and farther between with less overall intensity and duration.

It is like he is on rewind with symptoms. Started to do some of his old tics from a long time ago , i.e. chewing on shirt.

He has actually been joking with me, more playful. Playing pranks, etc, which he not done for years.

He went outside for the first time in about 4 months last week. He rode his bike for the first time this week.

We are seeing some definite improvement, but he is still retracing and doing other, new OCD things here and there."

 

WoW! First, good for you to be such a courageous mother--Second, you are seeing some concrete improvements, "joking...more playful" YES! I am very glad for you, for your son--

 

I just want to encourage you that our experience of healing with full strength long-term antibiotics has not been "immediate". It takes time for the healing--and it is somewhat up and down (in our experience certainly.)

 

I think the thing to watch for is a trend--and I say full steam ahead! Way to go--

ps--to my knowledge Buster is not a doctor assigned to our forum--but I could be wrong! maybe EAMom can tell us

[momtocole1]

Dear Buster,

Thank you for the reply. In looking at your summarization of my son's history you really did sum it up. Looking back even further he did have other severe episodes of OCD and tic behaviors but they always seemed to settle down. I had read about PANDAS but could never find a doctor to really "buy into it" and agree to do the research to treat it.

 

What is different during this most previous episode is that he became completely incapacitated by it. It was almost impossible to get him to leave the house. It consumed his whole existence. It frightened me so much that I turned to this forum and found Diana Pohlman, and at the same time found the saving sammy book.

 

 

 

So your history is:

• pre April -- minor OCD symptoms and chewing of shirt
  
• April->July, significant OCD symptoms but upset stomach on Zithromax
  
• August -- off zithromax
  
• late August -> end of Sept -- back on zith and tried CBT and ERP, no effect
  
• end of Sept -> mid October -- tried theraputic dose of Augmentin
  
• mid Oct -> now -- using high dose Augmentin (> 800+mg/day)
  

Currently seeing some improvement on high dose Augmentin (rode bike for first time this week), but also seeing some emergence of old symptoms (chewing shirt, tics, etc).

 

I read on another post hat Dr. K discusses the emergence of old symptoms and calls it flipping back the pages.

 

What I found most interesting in your post was about Impetigo.

 

A few things that might be relevant:

1. Impetigo is typically caused by either GABHS or staphylococcus aureus. Unfortunately, it is hard to get a good culture of impetigo, but the next time he gets a sore, get it cultured and ask them to check whether it is GABHS or Staph
    
   Ryan had a sore in September and I did ask them to culture it. My pediatrician said that it would be very difficult to get a reading of strep from the skin. What did come back on the results was: "Candida Albicans". Which I think is yeast, right. Nobody from the docs office ever called to give me the results. Do you think this is because we all have some yeast on our skin?
   
   
2. If it is strep, then ASO is likely meaningless because skin strep does not produce an ASO response.
   
3. If it is staphylococcus, it's unlikely that oral antibiotics on their own will be sufficient. This would be good to talk with your doctor, but my understanding is that Azithromycin is less useful on staphylococcus.
   
4. Have you tried mupirocin (Bactroban) on the sore. This is a good topical antibiotic particularly for impetigo.
    
   We have tried Bactroban, it helped a little, the biggest struggle is that he starts to lick the sore, sorry so gross, then open his mouth as wide as he can and it breaks it back open again. It is heartbreaking to watch. It actually becomes a new tic, when he gets one.
   

From the symptoms, this sure sound like intense OCD and I can imagine the stress he and you are going through.

 

Yes, it has devastated our family...to see our son suffer like this and feel helpless.

 

Do you have a child with PANDAS or are you a doctor that helps on this post?

 

Yes, I have a child with PANDAS and no I'm not a doctor. Our dd9 had severe OCD symtpoms including requirements about how people went through doorways, ritualistic questioning and culminating in hospitalization when her obsessions prevented her from eating.

 

Is you daughter doing well now?

 

Do you have your daughter on high dose antibiotics?

 

If she is, did you notice her refusing to eat while on this high dose? My son has been refusing food quite a bit since he started on the high dose Augmentin. He NEVER refuses food. Not to say that he is not picky. He is very particular about what he eats, likes to eat the same things over and over and over, but he always wants to eat, so it does concern me. He is quite overweight right now, 118 pounds, 12 yrs old next month.

 

The reason I wanted to get more info on your daughter is that I read somewhere that PANDAS can sometimes manifest as anorexia instead of OCD. Is that correct?

 

My niece who is 13, had a sudden onset of anorexia at the beginning of 6th grade. 11 years old. What made me question it is that they said she does not have the "typical" type of anorexia, she is not concerned about her body image at all. That she is more concerned about perfectionism.

 

Both her parents are brilliant. They have their Phd's from Berkley in Bio-Chemistry. What is sad is that they do expect her to be perfect and she is extremely bright, but she still feels that she does not measure up.

 

I suggested that they look into the PANDAS diagnosis and her Mom said that she is over the hump and she grew an inch. When we saw her she was a thin as a ail. SHe has high anxiety and barely eats. She chops her food in tiny, tiny pieces. I also read that sometimes they develop a fear of choking on food with PANDAS and that can prevent them from wanting to eat. Does this all sound crazy???

 

 

Part of the reason that he has gained so much weight so fast is that he has given up so much on life, i.e. not going outside, not riding bike. He has become VERY sedentary. Almost always on the computer. He is a genius at it (don't want to sound like a brag). He is hyper-focused/obsessed with everything he does. He does animations on the computer and is even creating commercials. He has lost all his friends. Honestly he has not had very many close friends because he is extremely over-sensitive and takes things very personally.

Friends usually give up. It just breaks my heart.

I

At this point, I do think the Cunningham tests are likely going to give you the most answers (depite them being a research study). I can see why with the intensity that you are considering IVIG. We ended up going that route as well.

Thank you for all your comments, very helpful!

 

Wishing you the best,

 

Buster

[Buster]

Hi Judy,

 

From your description, I was wondering if you are seeing impetigo or perhaps something more like fever blister or canker sore. Are they like these? http://www.21stcenturydental.com/smith/education/ulcers.htm.

 

Yeast is a pain to get rid of. Numerous folks on this forum have had to address increased yeast infections and perhaps they'll add their comments regarding how to get rid of it.

 

Is you daughter doing well now? Do you have your daughter on high dose antibiotics?

 

If she is, did you notice her refusing to eat while on this high dose? My son has been refusing food quite a bit since he started on the high dose Augmentin. He NEVER refuses food. Not to say that he is not picky. He is very particular about what he eats, likes to eat the same things over and over and over, but he always wants to eat, so it does concern me. He is quite overweight right now, 118 pounds, 12 yrs old next month.

 

In our case, our daughter's OCD directly impacted her ability to eat -- but this was before antibiotics. Our daughter had a fever on Jan 23rd, 2008 and in the following week stopped eating snacks. She had a tooth extraction in Feb and after that her symptoms ramped signficantly such that she was down to eating 1 small meal per day. She had body morphology issues and all the classic symptoms of anorexia nervosa in a 7 year old. Her rationale for not eating was so that if she did eat something "she wouldn't weigh more than 50 lbs". There's a lot to our story, but the short summary is that when she was down 15% we were able to hospitalize her for malnutrition. It was there that we were able to culture her and get blood work and discovered that she had GABHS as did her sister. After Augmentin it was as if a cloud cleared and a part of her came back but it was a fight for the next 3 months as the symptoms came back when we switched from Augmentin to Amoxicillin prophylaxis. It was several months later when we tried azithromycin and on day 9 her symptoms passed.

 

Over this past year, we've kept her on prophylatic azithromycin. She had many repeat exacerbations when in close contact with GABHS -- in fact we called her our canary because when she starts to ramp, we can take her sister in and she'd be positive for GABHS. We did check her sister for negative cultures 3 weeks after treating to ensure her sister wasn't just a chronic carrier. Exacerbations usually lasted 6 weeks. The issue for us was that she never quite came all the way back and by July this year many of the original symptoms were back. We tried a prednisone burst and this yielded good results for 4 days; however, this was a week after completing the 6 day burst. We did IVIG in August and for the first 2 weeks we were quite worried as things got considerably worse. On week 3, she got substantially better and by now 12 weeks post IVIG she's doing very well. We'll probably keep her on prophylactic antibiotics for quite some time.

 

 

 

I also read that sometimes they develop a fear of choking on food with PANDAS and that can prevent them from wanting to eat. Does this all sound crazy???

It is crazy. In our case, she did have the full on body morphology issues and drew people funny. It wasn't a fear of choking thing, it was a straight on fear of gaining weight.

 

Part of the reason that he has gained so much weight so fast is that he has given up so much on life, i.e. not going outside, not riding bike. He has become VERY sedentary. Almost always on the computer. He is a genius at it (don't want to sound like a brag). He is hyper-focused/obsessed with everything he does. He does animations on the computer and is even creating commercials. He has lost all his friends. Honestly he has not had very many close friends because he is extremely over-sensitive and takes things very personally.

Friends usually give up. It just breaks my heart.

Do you think he's depressed? We ended up putting our daughter on SSRIs at an extremely low dose because she had retreated so far into a shell. This was partially because she had no energy from not eating, she also had a pretty severe form of social anxiety, but more than anything else, she was depressed. In our case, it was pretty easy to diagnose as she was making suicidal statements at her doctor's office -- sort of freaked everyone out.

 

Hard to say whether he is just really into computers, needs some escape, is passionate about his work, is hitting puberty or something else is going on. Might be worth raising with your psychiatrist.

 

Regards,

 

Buster