Help please: Is this PANDAS? (long)

[Mom23]

Hello,

 

I am new member on this site and am the mother 6 yr old Danielle, who has many learning disabilities and ADD. I think she is also affected by PANDAS and am looking for advice from others about how to treat it and also on interpreting the lab results.

 

First our story. I've suspected since Danielle was around 2 or 3 yrs that she carries strep (& probably other viruses too). She's never actually had strep but I have had it several times in the years where Danielle was 3 to 5. I couldn't figure out where I was getting it & finally saw that I was getting it from her! I used to finish her food sometimes or share a utensil & whenever I did I would get a very serious sore throat/cold that turned to strep a few times.

 

Danielle has never had tics, but has had OCD behaviour from about 20 months. She used to have a serious obsession with bags, handbags, gymbags or even just plastic shopping bags. She'd put the straps of several bags around her neck, then take them off, then put them on, etc. She'd also put her stuff into all kinds of different bags & insisted on carrying all her "stuff" with her where ever we went. Carrying her stuff with her was a very big deal until the age of 5 almost. She also used to repeat things - I remember once we were walking home from the park & she wanted her snack which I didn't have with me. She cried, screamed & sobbed "I want my snack" over 250 times (I remember cause I counted in order not to lose it) in the 30 minute walk home.

 

She still has some OCD behaviour but it often coincides with her going off into her own little world. She has an obsession with picking leaves off trees & flowers from the garden. We've told her 100s of times not to do it but she can't control herself. I'm wondering if her bouts of going off into her own little imaginary world are also be OC. It is so bad these days. She goes off into her imaginary land a lot when she's at home, often at the dinner table. While we're trying to converse as a family, she'll be talking to herself, singing or barking - doing her own little imaginary world thing. When my husband brings her to the pool, she simply cannot stay "with him". She becomes Ariel the mermaid, DH becomes "father" her brother becomes some other finned-character and others in the pool mostly get in the way of her fantasy. I've been trying to address this with dietary restrictions & supplements (thinking it was linked to leaky gut) but something triggers her dreaminess, and it's more than just food. She is OK at school or when she's focused on a task but outside of tasks, she often goes off into fantasyland.

 

Danielle has a nearly perfect illness record with only 3 illnesses that I can remember: an ear infection, conjunctivitis and fever all of which happened about the same time during her 3rd year. She was treated with antibiotics and since then, there have been no illnesses at all, not even a common cold, which makes me think that she's one of these "viral" kids, for whom viruses go to their brains or otherwise affect them neurologically.

 

She's always had *extreme* anxiety and she handles changes poorly. Her nature is extremely sweet & gentle child, very sensitive & loving, but she has frequent bouts of explosiveness & anger which are triggered by little incidents. She has other issues as well, but I think the ones I've listed are mostly associated with PANDAS.

 

Now for the labwork. In June 2007 she got impetigo on her head. In Sept 2007, her ASLO was elevated: 348 (lab range: <200) possibly due to her impetigo (treated topically with an antibiotic cream).

 

In Jan 2008 after 3 months of homeopathy, her ALSO was at 275 and both the DAN doctor and lab director (Nataf in France) think that the value is too low to be a problem. But I insisted on further tests.

 

In Feb 2008, we got the following results (in French since done through Philippe Auguste in France):

ASLO : 260 UI/ml (range < 200)

antistreptodornases B: 960 (range <240)

antstreptokinases: 180 UI (range < 80)

 

Her ASLO is coming down but the other values are well above the range.

 

So now what? Do I conclude that she has it? If so, what do I do about it? What natural remedies have worked for others?

 

The DAN has prescribed another homeopathic treatment claiming it's effective but we're not done yet so time will tell.

 

Any help here is really appreciated. She's got a lot of other issues going on and I'm exhausted with all this research so leads into this would really lighten my load.

 

Thanks in advance,

Monique

[Mom23]

One more question: Is it normal for children with PANDAS to be able to control their related-behaviour (OCD, explosiveness) when outside the home? My daughter rarely has explosions or OCD behaviour at school, but she lets loose with me the minute she walks in the door end of day. Just wondering if this is a sign either way of having it or not having it.

 

Thanks again,

[Chemar]

Hi Mom23

 

i am not a PANDAS mom, but my son has inherited Tourette Syndrome and OCD etc.

 

supression is common in kids with a range of neuro issues where they seem to keep the lid on in other company but release when with family or other trusted people, with family often an explosive release.

 

altho again not related to PANDAS, but to TS, Dr Dunc over at Life's A Twitch has done seminars etc on how extended periods of suppression really can cause a waxing.

 

I see in my son and others with tics, that when supressing those for too long, it is almost like stoppering something that is overfilled, a new avenue to release opens, and *other* issues start to wax, like the OCD, or hyper stuff, or mood issues , sensitivities etc etc

 

Here is Duncan McKinley's site Life's A Twitch http://www.lifesatwitch.com

(small caution...my son easily "picks up" others' tics, and so never visits the tic gallery there )

[kkver]

OCD/anger control while outside home i think is right. I have seen my soon gets some times get angry on small things at my wife as soon as he enter the the car when she goes to pick him up from school.

 

Second how did she behave while she was on antibiotic ?

 

In PANDAS it is seen that O ASO and dnase titer counts are high or + ve strep and kids will display either ocd or tics or both. these are panadas guidelines but the best observation we have seen with posting on this board is use of antibiotics reduces or get rid of these conditions. Hope this helps.

[Calicat]

Hi Monique,

Only you truly know what your child is like, and the nuances of the behaviour you're seeing. That said, children have lots of natural differences linked to their personalities. Some kids ARE dreamy and have very rich fantasy lives. It's a sign of creativity and independence. Especially at that age, I see it as being within a normal range of personality characteristics. My daughter is a bit like that--always singing and humming her little songs, either ones we know or ones she makes up. She's doing it now as I type. She is also excellent at playing alone with all of her toys and making up intricate stories about them. She plays well both alone and with others. She's six, too. Anyway, I take this part of her personality as a good thing. Mine also exhibited little OCD behaviours at a young age, such as lining up her "little people" in a beautiful, straight line. The doctor said that's well within the range of normal, and lots of kids have some strange kid-like quirk.

 

I know you're dealing with other issues with Danielle as well, but I wouldn't worry too much about that sweet, singing, creative, dreamy part of her. Read her "Frederick" by Leo Lionni, about a mouse that's a dreamer! And good luck with the rest of it.

 

Calicat

[Mom23]

Thank you all for your helpful replies.

 

I do consider Danielle's vivid imagination to be one of her strengths when it is kept in check, but it is too engulfing & not normal. She plays tons of imaginary games with her younger brother (very bright NT child 20 months younger) and he gets right into the games with her - it's actually very positive & creative. But my son has a "normal" imagination and when I talk to him while he's in play, he is in reality. While Danielle seems to go into some sort of trance & is really in her dreams. For sure, it's an escape from reality but I don't think it's just psychological.

 

Just this morning, she was an egyptian queen fanning herself with the leaves of my palm plant. I had to tell her 3 times to get out of my palm plants & each time she replied "go away servant girl, the queen wants to be alone". When this happens, I feel I have to snap her out of her reverie cause she's really "in" Egypt! Her eyes are hazy, like she's doped.

 

She has food sensitivies & I thought her dopiness was related to this, but with her PANDAS results & her past, I'm wondering how treatment of PANDAS would help with some of her issues.

 

In PANDAS it is seen that O ASO and dnase titer counts are high or + ve strep and kids will display either ocd or tics or both. these are panadas guidelines but the best observation we have seen with posting on this board is use of antibiotics reduces or get rid of these conditions. Hope this helps.

 

What do you mean by "ve strep"?

 

I guess she meets the rules (assuming she has ve strep). But I honestly can't remember how she was on antibiotics years ago. She's only required antibiotics that one time & that was before I had a label for her issues.

 

The DAN thinks that antibiotics would be useless, but then she also thought the dnase would be low. I don't want to use antibiotics though I am curious to see how she would respond.

 

Others have used OLE to get rid of strep. Any other natural products work for you all?

 

Thanks again for listening.

 

Monique

[Ronnas]

Some information below re: strep titers, there is NO test for PANDAS. Hope this helps.

 

 

I have put some info below from the NIH. The majority of information that I have read would put a normal range for a strep titer test at 0-400. The majority of children with PANDAS that I have read about had very high titers. 600, 800, 1000's, 2000's.

 

Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre.

 

http://www.cmaj.ca/cgi/content/full/165/10/1353 (very good article, explaining PANDAS)

 

The ASO and Anti-DNAse-B titers that are elevated in association with other symptoms of PANDAS such as a DRAMATIC onset of symptoms, etc means that it is suggestive that strep could be a trigger but the best doctors can do is make an association between symptoms and the onset of tics or OCD. There is no full proof way to rule out or confirm a PANDAS diagnosis...therefore the CONTROVERSY among doctors.

 

Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

 

A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.

 

Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers.

 

It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)