Had our 1st visit with Dr. B

[scossio]

Well, we had our very long awaited visit with Dr. B yesterday and he agreed that my son's symptoms are pandas related. I was hoping that someone could explain to me a little further about what I learned yesterday? He said that there are something like 12 or 14 strains of strep (is that correct?) and that according to my son's blood work he does not have immunity to any except one of them. Forgive my ignorance, but how does this happen? This is all new to me...are children immunized for strep (didnt think so), or do we produce our own immunity for it? I feel so foolish to ask these questions, but I need to learn everything now. This has been a 3 1/2 year journey that has taken away my son's childhood and severly affected my family. He said that my son could be reacting to those around him that are infected with strep or even those who are carriers.

Can anyone explain how the carrier thing works? How could I or someone else be a carrier of strep and not be symptomatic? And this could still cause my son to be reactive? Again, I appologize for the pure ignorance.

Lastly I wanted to ask about doing a steroid treatment. I know I have read words of caution here about doing it. He gave us a 2 week taper down RX. What is the reason for that? What are the pros and cons for using it?

I have to say, I was almost surprised that he dx my son with pandas b/c he does not have tics, nor does he have the traditional OCD type behaviors that I read about here. He has so many other symptoms that Dr. B picked up on right away, infact he asked me if he could keep the handwriting samples I had brought, b/c it clearly showed how it has affected his motor planning and coordination. (I hope he shows it as an example next time he is on TV...it has very rude comments from his teacher written all over the pages about my son's "SLOPPY" handwriting. I bet she would believe me now!

Thanks again for any help. This group is always so supportive!

Stephanie

[dcmom]

Hi Stephanie.

 

Well congrats (I guess) on diagnosis and starting down a path of treatment.

 

I do not and have not seen Dr B with my two pandas kids, however have seen several other pandas docs. To be honest, I have heard this confusion about what Dr B is telling his patients several times over the last couple of years- which really makes me wonder how he phrases things. I have become very pandas-knowledgeable, but am not a scientific person, so this will be a layman's explanation- however the science is correct. Hopefully kim or Buster will chime in with a more scientific explanation.

 

When Dr B was talking about your son's immunity to 14 strains of strep- he is not talking about GABHS, or strep throat. He is talking about a bacteria called strep pneumonae (sp?), which except for bacteria shape, has no relation to strep throat. Most of our children were vaccinated against approx 12 of these strains at birth with prevnar. Testing for these strains is a method some immunologists use to test the immune system. The jury is still out on whether this is correct, some agree, some don't. Your son is not mounting a response to these strains, which means either the vaccine was faulty, it has worn off, or he has some immune deficiency. Most immunologists (and insurance companies) would then vaccinate with something like prevnar again, and re test titers. If the titers have not risen, they would deem you immune deficient. This is a way to get IVIG coverage. I don't believe Dr B will immunize a pandas patient, because of the potential for any immune challenge to exacerbate pandas symptoms. However, these titers do not measure your child's immunity to strep throat- they just do not, and I have seen this written about many times. If anyone has new info that shows any relation, I am sure they will chime in. I suggest doing some minor internet research on strep pneumonae and you will get a lot of info. There have not been adequate studies to date about strep pneumo numbers in the general population, so without revaccination, these numbers are relatively useless.

 

It is widely accepted in pandas doctors, researchers, and parents that kids with pandas will react to strep, other illness especially respiritory illness and to illness exposure. Many report reactions to loose teeth, vaccinations and other immune challenges.

 

There are some people who carry the strep bacteria in their throats (or other places?) and it does not make them physically sick. They are called carriers. I have not experienced any issue with this, however others on the board have. Theoretically a carrier "should" culture positive. It is good practice to culture your entire household at this point to be certain there are no carriers. Carriers are typically treated with a course of clindamycin.

 

Steroids are a serious medication and their use should be minimized. However, my girls have been eXTREMELY steroid responsive, and using steroids several times per year, over the last three years, has allowed them to live most of their days pandas "symptom free". Steroids do two things for pandas: lower the immune response and combat inflammation. For some children (and IMHO this depends on the dosage, duration and how long the child has been sick with pandas, and how advanced the episode is) steroids are only a temporary indication that something autoimmune/inflammation related is happening, and they must move on to stronger treatments, and for others steroids have offered very long term relief/ and end to the current pandas exacerbation.

 

I think most parents on this board have been very happy with Dr B. I have heard reports of great professionalism and compassion. I must suggest however, that whomever your doc is, you become as educated as possible about pandas issues, and be a partner (or in my controlling self's situation- the director) of your son's treatment. IMHO it is very important to get more than one opinion if possible, and if your son is not getting better under one doctor's care, to move on.

 

Hopefully this is the beginning of healing for your son!!

[scossio]

Thank you so much for the response. I am wondering from what you are telling me if there could be a connection with the fact that his labs also showed that he never developed any immunity from the TDap (tetanus) or in the fact that he developed Hashimotos (autoimmune thyroid disease) at age 7 when all of the pandas symptoms started? Maybe as you said he may have an immune deficency? Hopefully we are on the right track now because Dr. B ordered lots more lab work to be done, and I am very grateful that we have found him.