Opinions and help needed...

[trggirl]

Hi, after switching doctors, I finally have one that wants to do the ASO titers. Blood for us is a huge thing so while doing it, I would like to get the Cam Kinase. The problem is that I can't get hold of Dr. Cunningham (probably due to the holidays). Does anyone know of any other way I can get this done? I would love to do it while my daughter is out of school. Also, can you think of anything else I should request that might be needed? We did all the basic blood work a couple of months ago.

 

And now another issue that I need opinions on. This doctor wants us to see a psychiatrist to be evaluated for ADHD because my daughter's focusing problems are becoming such a huge issue. I have very strong opinions on this and most of the doctors I have talked to do not agree with me at all. Please let me know what you think. Here is the issue.......I had my daughters urine neurotransmittors checked. I know the controversy is that the neurotransmittors change on an hourly basis so the urine test I take now might be completely different an hour from now. My thinking is that it should be looked at like you would look at the blood of a diabetic. Specifically, if you take the blood of a diabetic and you get a 400 reading, it is so far out of line that you know the patient is going to be diabetic. Now that reading may change in the next hour and be completely normal, but you caught that 400 reading and you know you have a diabetic. I feel that it is probaby similar with the neurotransmittors. If you do the test and one neurotransmittor is way out of range, I don't think you can just discount that.

 

My daughter had a very high Norepinephrine level according to her urine test. Most ADHD drugs increase Dopamine and therefore, Norepinephrine. My gut feeling is that she would have terrible reactions on the typical ADHD meds because it would make her Norepinephrine go even higher. This new doctor, while being great about looking at titers, does not use urinary neurotransmittor readings. Would blood neurotransmittor testing be more acceptable to a doctor??? Again, IMO I just don't think you can discount neurotransmittor levels.

 

Just to be clear on my feelings, if someone could show me that my daughter had a low level of a specific neurotransmittor and that was causing the focus issue, I would treat her in a heartbeat. I just don't like tossing drugs at children haphazardly hoping for good results but in a lot of cases getting some bad results.

 

And also, in the back of my mind, I keep thinking that if she is PANDAS (she is not diagnosed yet), and we treat with antibiotics, would that clear up the focusing issues and we would not even have to look at ADHD meds?????

 

Just so much to weigh and I am confused and overwhelmed and want to do the right thing for my daughter. And my daughter is to the point where I have got to get her some help. I just don't want it to be the wrong help.

[Debbie1]

What type of doctor is currently working with you on this?

[trggirl]

She is a pediatrician but she is one that was recommended on this site.

[dcmom]

Trg girl- I am sorry you are here, I know this is all so confusing. I will give you a few thoughts:

 

I am not sure by what you are saying that you are at a great doc for pandas. There really are only a few that have a real understanding. Where do you live?

 

I am NOT a big fan of strep titers (ASO or Anti Dnase). All they can possibly indicate is that your child has had a strep infection- but they are not accurate at that. Many kids get strep w/o high titers. IMHO it is not necessary to get them done, esp if blood draws are an issue- it also is a slippery slope, most docs that want the titers want to track them, this means multiple draws. My own daughter, clearly pandas, had normal strep titers a month after a positive culture and clear cut pandas onset.

 

Dr Cunningham's office is closed until the new year. You will not be able to do the blood draw until then, at that point you can email them for a kit and have the draw done at your doctor or lab. Ask the doc to prescribe emla cream (which is a numbing creme applied to point of blood draw)- this really helped my dd.

 

If you suspect pandas, your first step is to get on a long term, full dose antibiotic. My suggestion is zithromax (daily), although some use augmentin. Be prepared to wait, it took my dd about 30 days to see an improvement. (BTW improvement with academic issues took a lot longer)

 

After about 30 days on abx, it would most likely be appropriate to try a month long steroid "burst" (of course stay on the abx). This can help to jumpstart healing for some.

 

I would not even consider a psychiatrist, and definately not psych meds, until you have gone through these steps.

 

All the best...

[sf_mom]

Trg girl: If you treat PANDAS aggressively the AD/HD will resolve. It did for our son..... but if there is a set back the symptoms appeared in the following order for us: mood switching (daily complaints of not feeling well), AD/HD, OCD, TICs. We are almost a month post and 2nd IVIG treatment and he is about 95% better. Occasionally, I notice a cough, or a series of coughs (perhaps a cough in a day, or a series of 3 coughs in a day). I like to refer to the them as a 'flair', no OCD that I can detect, no AD/HD (sits calmly at school, not disruptive or talkative).... Mood liability was our biggest issue and that has gotten better. We can go a day or two without him easily switching from happy to crying. BUT, when he does cry, I can reason with him. He is 5 1/2. We had a set back after our first IVIG (either the first treatment wasn't enough but he was also exposed to strep twice in his class). About 7 weeks post his first IVIG, he started with being moody every day (complaints of a headache and stomach ache), then he got very talkative, inattentive at school and just prior to second IVIG he was starting to hit his head to turn off his brain hence OCD.

 

We know that two of our sons were exposed to a child that had RF (also now PANDAs), got sick within days, one was hospitalized and diagnosed with Kawasaki's both our children are PANDAS. We believe our older son also had Kawasaki's and went undiagnosed. The only known treatment for Kawasaki's is IVIG and sometimes they need several rounds of IVIG. We are prepared to do as many rounds of IVIG to tire the toxin/bacteria/cross-reactive antibodies out and are in a holding pattern to determine if another treatment is required. Why I tell you all of this is, Kawasaki's does not produce elevated titers (ASO, Anti-DNAse), they typically have a sore throat and swollen tonsils with no positive cultures, it share 93 common symptoms with RF, with RF it is common knowledge that there are OCD/TICS symptoms, the Japanese have found the exotoxin of the S. Pyogenes in 100% of all patients Kawasaki's studied, the S. Pyogenes is a really resilient strep bacteria inclusive of the M1, M3, M18 strains of strep. It does not eradicate easily, antibiotics alone are not effective treatments and the bacteria can survive in the host for an extended period of time. It is the same strain found in RF. It has the ability to deplete WBC, RBC and potentially the immune system IgG subclasses. Again, with Kawasaki's sometimes several rounds of IVIG are required to resolve symptoms.

 

I tell you all this not to scare you but help you understand why extensive testing is required to assist you in proper treatment of your daughter. The lab is closed until the New Year for the CaM Kinase test and can only be done through them. I would do the following test all at once and it should only require one blood draw depending on your child size maybe two.

 

Tests: CaM Kinase Test, WBC, RBC, STREP PNEUMOCOCCAL ANTIBODY TITERS, IgG Subclasses and perhaps ASO/Anti-DNAse-B. However, I will stated the ASO and Anti-DNAse-B are not indicative of PANDAS diagnoses and should only be used as a reference. In my older son he had slightly raised ASO, negative Anti-DNAse-B, in our younger son both ASO, Anti-DNAse-B are negative. Both our kids are showing deficiencies in their strep pneumococcal titers and one has deficiencies in his IgG subclasses with low red blood count and low white blood count. Both have high CaM Kinase.

 

Perhaps try giving her Benedryl prior to blood draw.

 

-Wendy

[trggirl]

DC Mom, thank you for sharing your thoughts!

 

I am in Houston and have been trying to find a doctor that would even talk to me about PANDAS without looking at me like I am crazy. This doctor is the first one that is listening and acknowledging that she thinks PANDAS exists. She just does not know a lot about it but she really seems willing to learn. With that said though, I can tell that she is not going to go out on a limb. If the titers are positive, it would be an easy answer for her. I think she would write the prescription with no problems. If the titers come back negative, I don't think she will give antibiotics easily but I am hoping as I present more literature and findings to her, and her talking to docs that are in the know, she will get comfortable with it. Again, I think it is just an issue of her being in new territory and not wanting to do something that could cause harm.

 

What makes this hard is I don't think my daughter is one of the extreme cases. Yet, IT IS causing a lot of problems. She has always had her very, very strong oppositional moments with me, but I wrote it off to being an age thing. She has always done little things like repeating her words over and over, simple talk over and over, etc, etc, and again, I just worked around it and wrote it off as her having some quirks. Homework has always been a nightmare, but because she seems to learn it quickly, I just wrote it off as her being difficult with me. Her talking is extremely excessive. I don't think she even hears what she is saying half the time. So many other LITTLE things. What made me finally look at PANDAS is that she had a strep episode last year and three weeks later she developed tics. They were very clear shoulder shrugging, eye-rolling, saying yes, yes over and over again, tics. I suspect that if she does have PANDAS, she has had it since she was about 3. The tics just happened to be the first crystal clear symptom.

 

Wendy, thank you for answering. I think I am going to copy and paste your post and give it to my pediatrician. Lots of good information there. Thank you.

[EAMom]

Hi Trggirl,

 

DCmom and SFmom have already given you lots of good advice.

 

I agree with DCmom and SFmom on the titers (ASO, anti-dnase b ). Our Pandas dd had consistently low titers (despite positive culture, the "right" time frame for blood draw, and full-blown PANDAS symptoms). You need to take those tests with a "grain of salt". They are only a small piece (often unhelpful) of the PANDAS puzzle.

 

Your doctor should write you a RX for EMLA cream...that numbs the skin b-4 a blood draw.

 

Have you done a recent throat culture on your dd? I would also rec. checking family members (to check for carriers).

 

Have you tried giving Advil?

 

And also, in the back of my mind, I keep thinking that if she is PANDAS (she is not diagnosed yet), and we treat with antibiotics, would that clear up the focusing issues and we would not even have to look at ADHD meds?????

 

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability.

[trggirl]

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability

 

That is what I am hoping EAMom.

 

We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before

Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative . She started a new motor tic (after having gone for quite some time without motor tics) that weekend, but it has subsided now. She is being very oppositional though and has complained about headaches and stomachaches.

 

I have tried Advil and it is not clear whether it helps or not.

[trggirl]

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability

 

That is what I am hoping EAMom.

 

We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before

Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative . She started a new motor tic (after having gone for quite some time without motor tics) that weekend, but it has subsided now. She is being very oppositional though and has complained about headaches and stomachaches.

 

I have tried Advil and it is not clear whether it helps or not.

[trggirl]

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability

 

That is what I am hoping EAMom.

 

We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before

Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative . She started a new motor tic (after having gone for quite some time without motor tics) that weekend, but it has subsided now. She is being very oppositional though and has complained about headaches and stomachaches.

 

I have tried Advil and it is not clear whether it helps or not.

[trggirl]

Oops, sorry. I was trying to figure out how to quote and somehow I re-posted instead. Now I can't figure out how to delete.

[EAMom]

We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before

Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative .

 

I would re-culture her and also culture family members.

 

It looked like you re-tested her pretty soon after finishing abs, so that day-after-Thanksgiving swab might be a false neg. Ideally, you would want to wait to culture 14 days after the last antibiotic dose to make sure the strep is clear. Even then, strep might still may be "hiding out" elsewhere....intracellular, vaginal, sinuses etc.

 

Most PANDAS parents find there kids need to be on long term (often full-strength) antibiotics. For example, Saving Sammy was on a very high dose of Augmentin XR for 1 year, and then a lower dose for another 2 years...plus, he went through puberty in that time which might have helped his remission. A good percentage of PANDAS kids on this forum don't achieve full remission on the long-term full-strength abs and then need to add on steroids/IVIG and or PEX.

 

Even with remission of symptoms, continued prophylactic abs are essential to prevent further strep infections (just like you would do for rheumatic fever).

 

BTW...ASO/ anti-dnse b might be lowered due to anti-biotic use. Here's some helpful info. on these titers: http://www.latitudes.org/forums/index.php?...art=#entry29483

[dcmom]

Trg girl-

 

It sure sounds like pandas

 

I am going to be rather blunt, but only because I care and know the suffering that pandas brings upon a whole family.

 

At minimum, your daughter needs a long term (minumum 30+) days of daily antibiotic. Maybe the amox didn't do the job, so I would probably try zithromax (it gets at intracellular strep, and might be a bit easier on the tummy). After this you will probably need prophylactic antibiotics long term (though many of us find our kids need full strength for a lot longer).

 

You will probably want to consider a month long steroid burst.

 

Since she is on the milder side, hopefully you will not have the need for IVIG or PEX. But, it might be wise to learn about these procedures and start down a path where you can have access to them if ever needed.

 

If you don't think your doctor is going to be there for you for all this, you need to consider the possibility of traveling to DC or Chicago to get her the proper treatment. My personal opinion is that when your child and family are suffering, the heck with educating doctors....get treatment, then go back and educate your local docs.

 

I am thinking there are some parents on the forum from Texas- maybe they will respond with a better doc...

 

good luck...

[sf_mom]

My immediate thoughts were similar to EAMom. When you go back to the Dr. re-culture her for strep. I suspect its still there. The Dr.'s spent 7 months trying to eradicate the strep from our son's friend who had RF to no avail. Only after they pulled his adenoids and swollen gland resolved did they pronounce him cured. Unfortunately, the strep was still there and he continued to get sick and have numerous symptoms associated with PANDAs. Thankfully, he just had IVIG and is doing much better.

 

My heart goes out to you in your search for a good Dr. If in fact, you can not find someone to prescribe long term antibiotics over the next couple of months. Definitely, move on to someone that is well versed in PANDAS. Our son is also considered mild but had many of the low level symptoms until his body finally gave up and he was TICing away. He is a different child and its tough figuring out who he really is now that he can sit calmly.

 

I will be forever grateful to those that have helped along the way!!!!

 

 

 

We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before

Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative .

 

I would re-culture her and also culture family members.

 

It looked like you re-tested her pretty soon after finishing abs, so that day-after-Thanksgiving swab might be a false neg. Ideally, you would want to wait to culture 14 days after the last antibiotic dose to make sure the strep is clear. Even then, strep might still may be "hiding out" elsewhere....intracellular, vaginal, sinuses etc.

 

Most PANDAS parents find there kids need to be on long term (often full-strength) antibiotics. For example, Saving Sammy was on a very high dose of Augmentin XR for 1 year, and then a lower dose for another 2 years...plus, he went through puberty in that time which might have helped his remission. A good percentage of PANDAS kids on this forum don't achieve full remission on the long-term full-strength abs and then need to add on steroids/IVIG and or PEX.

 

Even with remission of symptoms, continued prophylactic abs are essential to prevent further strep infections (just like you would do for rheumatic fever).

 

BTW...ASO/ anti-dnse b might be lowered due to anti-biotic use. Here's some helpful info. on these titers: http://www.latitudes.org/forums/index.php?...art=#entry29483

[trggirl]

DCmom and SF mom and EAmom, Thank you for the information. So, it looks like I am stuck on the blood draw until after the holidays.

 

A question though, if the ASO titers are negative and the Cam Kinase is negative, will the out-of-state specialist doctors give a trial of antibiotics just based on symptoms????? And keep in mind they are milder symptoms. The tics have pretty much stopped.