Jump to content
ACN Latitudes Forums

Results back from Dr B, questions questions


Recommended Posts

Hello,

 

We had our second appt at Dr. B's office this past week. Labs were back and we basically got good results, I think? I was worried about Lyme because we live in the woods, but thankfully my DS did not have it and my husband was tested and didn't have it either he's always roaming in the woods. None of us had Strep. I have an active mycoplasma infection of which I am now being treated everyone else did not have an active infection, only me. Since my son has been on Zith for 30 days his sinus infection has cleared, that's good news too.

 

My DS12 had a few items pop up on the blood work and the NP was not overly concerned with it. He had a slightly lower WBC 4.2 (normal 4.5). She said it could be from his infection. He had high monocytes 17 (high normal was 15). She didn't even mention that. He also had a low homocysteine 4.0(low normal 4.9). He had slightly raised ANA titer 1.64. The NP told us that Dr B would say that this is insignificant but she wants us to check with his Pedi to see if he thinks we should follow up with a rheumatologist. So I will be making an appt with his Pedi next week.

 

I am still a bit concerned as to why my son has to remain on antibiotics and I'm sure his Pedi isn't going to understand this either. His infection has cleared and his tics are gone. The NP said he has to remain on them for 3 to 6mos and then prophylactically(sp) until he reaches puberty.

 

Questions:

1. Doesn't long term antibiotics hurt the immune system in the long run?

2. He's not having symptoms now why do we need to keep him on this?

3. He has had very mild Pans symptoms and shouldn't he be treated on a symptom basis?

I asked the NP the above question and she said I know I don't really get why they have to stay on so long either.

4. My son still looks pale sometimes on the antibiotic and I don't really understand why that is. I guess I will ask that question to his Pedi, but I know he's going to tell me to take him off the antibiotic.

5. Do any of his results in blood work need to be investigated further other than the ANA titer?

 

I guess with all this antibiotic resistance and hesitance of the regular Physician to prescribe keeps me wondering if we're doing the right thing. I just want whats best for my son. There is definitely something wrong but how do you know you're doing the right thing? I don't want to hurt his immune system any further.

 

Last question, Can PANS cause a slow growth pattern? My son has always been on the small side but this past year when all the kids in his class have grown quite a bit he's hardly grown at all, and of course the kids are now teasing him calling him a baby and saying he's going to be a midget. The Pediatrician doesn't have a clue about PANS so I can't ask him.

 

I know we all are concerned parents here and that we are not Doctors but I value any input/support given on this forum. All of you are amazing and very helpful and informative. I don't know where we'd be without this forum and it's members.

 

Thanks for listening!

Link to comment
Share on other sites

Well antibiotics have a few different functions in pandas kids. 1) Primarily,(as in rheumatic fever where strep attacks the heart), as a prophylactic to prevent or reduce future strep (or other) infections. Because with each subsequent infection, pans symptoms return and it gets harder for the kid to get to baseline each time. So in the case of rh. fever you want to reduce further heart damage and in the case of pans you want to reduce further brain damage. 2)Antibiotics in pands kids appear to have anti-inflammatory effect, hence an effect of reducing symptoms and 3)they also seem to have an immune-modulating effect, meaning they somehow help the immune system get over the autoimmune reaction. It is recommended in pandas/pands kids that they need an initial at least 30day dose of antibiotic to clear an infection, as opposed to your typical 5 or 10 day dose a normal kid would take. One of the few trials on antibiotics in pans kids showed less infections, hence less pans symptoms. The expectation is that with each new infection your kid will react with a pans flare of symptoms and that's what we're trying to avoid or reduce. That's why also the ivig clinical trial at the NIMH currently have those kids on antibiotics for at least a year. It doesn't look like any of the other tests warrent forther review since they're so close to normal limits. The paleness may or may not be related to the antibiotic. And as regards the slow growth - are you are your husband on the smaller side? Since he's 12 he may just be pre growth spurt and will catch up once he hits the teens. Or another reason, during his pans flare-up was his appitite effected? My ds is on the small side also, but he has a lousy appitite and pandas sensory issues cause further eating issues, just a possibility. Lastly, I'm surprised Dr B's NP didn't have some more indepth answers for you. Also as regards antibiotic resistence, you have to weigh the benifits vs the risks. When the medical comminity talks about antibiotic resistence generally they mean in a race as a whole, if the whole nation went on permanent antibiotics, yes we'd be in trouble pretty fast. But when we're talking about a few select kids, no it's not generally a problem. They're treated rh fever this way for years with no ill effects, and lyme and acne etc. Plus if your kid becomes resistent to one, there are many more to pick from. Hope this helps!

Link to comment
Share on other sites

Thanks for the great info Kiera. That at least helps me understand the long term antibiotics portion I hope that my sons gut can handle it. I have been giving him Florastor and I think I'm going to start alternating it with Florajen4kids to mix things up a bit.

 

So if we decide to stop antibiotics that leaves him open to getting another bacterial infection. In the past when he was on a normal dose of antibiotics he would get a viral infection right after we finished. I talked with his Pedi about that and he said that happens quite often after taking antibiotics.

 

Also when we had our appt at Dr B's with his NP I had the whole family with me for the results portion and it was a bit hectic so that's probably why we didn't a full explanation.

 

About my sons small stature: Yes I am only 5'2" but my husband is 5'10". He is 4'8" at age 12 weighing 82 lbs. He has slight sensory issues too and loves the sweets, but is picky about Veggies and will only eat turkey, chicken and just Wendy's hamburgers as far as red meat goes. I have given him a pediasure drink with breakfast for years just to make sure he get's his nutrients. He usually grows about 2 inches per year, but this year it's only been 1/2 inch.

 

Oh one more quick question for anyone. It seems that after a while the antibiotics stop working and kids then move on to IVIG, is that because the antibiotics have taxed out their immune systems? I was wondering what happens with kids who do not get antibiotics at all. I never hear anything about that on the forum. Also I don't hear much about kids that actually improve on antibiotics and move on with a normal life, or is that because they just don't come back to the forum? just wondering, thanks

Link to comment
Share on other sites

Well Dr K does believe antibiotics can manage symptoms for a few years but eventually most need ivig. I don't necessarily agree with this though as reading this forum, many are managing symptoms with prophylactic antibiotics and then bumping up to full strength with infections for a few weeks. I think it all comes down to degree of dysfunction. You have to decide how badly the symptoms are interferring with life. Dr K measures it like they do to access the need for meds for ADHD - namely is it negatively impacting his school, social or family life? IVIG is a blood product so you again have to weigh benefits vs risk. And yes, I do think alot of people are sucessfully treating with abx and moving on with their life, so we don't necessarily hear all the good stories, but this is hard to quantify, hence the need for a pandas registry, which I believe someone is trying to start (maybe OCD foundation?). I have read florastor and culturelle are great choices and can be given at the same time as antibiotic and no strep. thermophillus in them. I don't think the abx really tax the immune system, it's just that in some kids the autoimmune exacerbation gets so severe that abx no longer work and stronger immune modulating therapies have to be tried (IVIG).

Link to comment
Share on other sites

Our LLMD said to give probiotics 2 hours after abx, he wants DD to take 20BN culturelle cells twice a day. I mentioned that this is what we were doing to Dr. B's PA and she agreed with this. (that's two adult tablets twice a day emptied into liquid)/ I mix in Florastor when she gets a stomachache beccuase LLMD gave me a handout that said that Florastor is best against C-Difficile. DD hates the taste of it so I don't use it all the time.

Link to comment
Share on other sites

Our LLMD said to give probiotics 2 hours after abx, he wants DD to take 20BN culturelle cells twice a day. I mentioned that this is what we were doing to Dr. B's PA and she agreed with this. (that's two adult tablets twice a day emptied into liquid)/ I mix in Florastor when she gets a stomachache beccuase LLMD gave me a handout that said that Florastor is best against C-Difficile. DD hates the taste of it so I don't use it all the time.

 

It's so hard to give probiotics 2 hours after abx when your child is going to school so that's why I use Florastor in the morning because it states that it "can " be taken with abx. On the weekends it's fine to do the 2 hour wait, but it's not when they're in school. I had also heard that culturelle can be taken at the same time, but for now I'm using florastor and florajen4kids because that's what I have. I may switch to culturelle when this runs out.

 

That seems like quite a bit of probiotics but if it helps that's a good thing. Thanks for the info

Link to comment
Share on other sites

Well Dr K does believe antibiotics can manage symptoms for a few years but eventually most need ivig. I don't necessarily agree with this though as reading this forum, many are managing symptoms with prophylactic antibiotics and then bumping up to full strength with infections for a few weeks. I think it all comes down to degree of dysfunction. You have to decide how badly the symptoms are interferring with life. Dr K measures it like they do to access the need for meds for ADHD - namely is it negatively impacting his school, social or family life? IVIG is a blood product so you again have to weigh benefits vs risk. And yes, I do think alot of people are sucessfully treating with abx and moving on with their life, so we don't necessarily hear all the good stories, but this is hard to quantify, hence the need for a pandas registry, which I believe someone is trying to start (maybe OCD foundation?). I have read florastor and culturelle are great choices and can be given at the same time as antibiotic and no strep. thermophillus in them. I don't think the abx really tax the immune system, it's just that in some kids the autoimmune exacerbation gets so severe that abx no longer work and stronger immune modulating therapies have to be tried (IVIG).

 

That would be great if someone starts a registry, I hope that if it does happen it would be posted here.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...