Still don't know what to do... HELP!

[kim]

mat's mom,

 

Can you say how your Dr. tested for metals? I'm always curious about that. Hair, stool, urine, blood?

[smartyjones]

isabel - when i read your posts, i so remember back in Feb when i was trying to walk a similar line btwn conventional med and alternative -- chain drinking coffee while back and forth talking to ped, naturopath, my husband, my mom.

 

has he been on the same abx since july? azith was horrible for my son but when he got on keflex, he returned to 100% in 3 days. there seem to be many stories - saving sammy, worried dad - that weren't seeing results with abx but a change or increase really made a difference.

 

lyme can make it difficult to kick infections. i have a friend who has 3 kids all diagnosed with lyme - only the oldest had symptoms. let me know if you want to talk with her - she's very helpful although as obsessed with lyme as we all are with pandas. they see an integrative dr in dc and every 3-6 mths go the "the" lyme dr in connecticut.

 

i also really urge you to go in the direction that you are leaning that you feel is best.

Kathy

[matis_mom]

mat's mom,

 

Can you say how your Dr. tested for metals? I'm always curious about that. Hair, stool, urine, blood?

They tested the blood. It was one of those tests not covered by insurance that need to be sent to a special lab, but I can't remember the name of the lab. I can look it up if you want to look into it.

[matis_mom]

isabel - when i read your posts, i so remember back in Feb when i was trying to walk a similar line btwn conventional med and alternative -- chain drinking coffee while back and forth talking to ped, naturopath, my husband, my mom.

 

has he been on the same abx since july? azith was horrible for my son but when he got on keflex, he returned to 100% in 3 days. there seem to be many stories - saving sammy, worried dad - that weren't seeing results with abx but a change or increase really made a difference.

 

lyme can make it difficult to kick infections. i have a friend who has 3 kids all diagnosed with lyme - only the oldest had symptoms. let me know if you want to talk with her - she's very helpful although as obsessed with lyme as we all are with pandas. they see an integrative dr in dc and every 3-6 mths go the "the" lyme dr in connecticut.

 

i also really urge you to go in the direction that you are leaning that you feel is best.

Kathy

Tell me about it, I did not get any sleep last night!

As far as abx, we have tried Amoxicillin, Cefuroxine, Vancomycin, and now we are trying Augmentin... so far no adverse reactions to any of them, thank goodness!

Still that leaves Zithromax, Keflex, and I'm sure there's others... How long do you give a specific abx before asking for a change/increase in dosage? At this point I have accepted the trial-an-error route for finding the right one, I just wonder how long it takes to tell if it's doing the trick or not.

 

Keep thinking about it and can't bring myself to try the steroids... the list of side effects goes on an on, even if he did not have Lymes. Also, he is 12 right now, and on the short side for his age. This is right the age when his brother had his growth spurt, I don't want to sabbotage that. Also, since his symptoms are not so severe, I feel God is giving us some time to think about this. On top of everything, the holidays are coming and I'm due in January, so I feel this is not the time to rock the boat. These last couple of days I've seen him a lot happier, still anxiety at night, but much more lively during the day... I can't tell if it's the antibiotic working better, or the yeast creeping back up, but it's good to see him laugh and fool around with his siblings more.

 

Hopefully in a few more months we will have found the right antibiotic, and have a better idea of where we are standing re: Lymes. In the meantime, I might trying finding a good immunologist. Does anyone have a recommendation for someone in the Northern Virginia area?

 

Thanks all for your sympathy!

 

Isabel

[Debbie1]

Hi Isabel,

 

I have two kids with PANDAS.

 

ds8 was my more severe child and has been treated with antibiotics only. He had crazy high titers (antiDNASE was 2700) when diagnosed 1 year ago and responded well to amoxicillin. It took some time for the symptoms to disappear (I don't remember how long), but we saw steady improvement. He was symptom free for 8 months until exposed to strep in August 2009. At that point we saw an increase in OCD, although no where near previous exacerbations. He is mild even with this exacerbation - we see the OCD, but most others wouldn't notice. He is happy and doing well in school (after two very difficult years), social, plays basketball, baseball. Dr. L. switched him to augmentin about 1 month ago. We have not yet seen significant change in the OCD.

 

dd12 has tics only. She also had high titers (but not as high as ds). She has had a much harder time fighting this, I think because she is older and went undiagnosed for so much longer. She has had two steroid bursts. The first was in December 2008 and the second was October 2009. She is now on a treatment dose of augmentin.

 

I have been told by some doctors that the steroid is just a patch, a temporary solution and will not solve the problem long term. Think of it similar to an allergy - the steroid will halt the current immune response, but if you are exposed to the allergen again, your body will react again. I have also been told that the titers will come down - steroid or not - they just take time. The steroid speeds up the time frame by helping the titers come down faster.

 

I did ask an endocrinologist about the affect of the steroid on growth. He said dd would probably grow a little slower while on them, but once off, growth rate should return to normal. In the grand scheme of things, he did not think that 1 month on steroids would make much of a difference. I would encourage you to discuss your son's case with an endocrinologist if you are concerned about any affect on growth.

 

If you are not sure you are ready to try the steroid, then wait. It will still be an option if you decide to use it at a later date.

 

Debbie

[T_Mom]

Mati's Mom, I want to chime in here--First, I am really sorry your child is going through this--

For us antibiotics provided an obvious improvement to OCD and tics. If it is Pandas I think we are all seeing this as a pattern that is relatively consistent over time...But it does take time.

 

I would ask re: your antibiotic use have you seen a significant improvement over time in symptoms lessening?

 

Our daughter was severely affected with OCD and when the antibiotic dose was high enough we saw a marked improvement week to week for a 3 month period of time. Around 3 months her improvements plateaued and we tried a steroid burst (NO big deal in our case--twice now.) With the steroids she came back 110%. Again, though--that makes sense if it is the "Pandas" construct of inflammation, etc.

 

I think if you truly believe it is Lyme related you certainly need to rule that out regardless--

 

All the best, I hope you find what will help soon--

TMom

[matis_mom]

Mati's Mom, I want to chime in here--First, I am really sorry your child is going through this--

For us antibiotics provided an obvious improvement to OCD and tics. If it is Pandas I think we are all seeing this as a pattern that is relatively consistent over time...But it does take time.

 

I would ask re: your antibiotic use have you seen a significant improvement over time in symptoms lessening?

 

Our daughter was severely affected with OCD and when the antibiotic dose was high enough we saw a marked improvement week to week for a 3 month period of time. Around 3 months her improvements plateaued and we tried a steroid burst (NO big deal in our case--twice now.) With the steroids she came back 110%. Again, though--that makes sense if it is the "Pandas" construct of inflammation, etc.

 

I think if you truly believe it is Lyme related you certainly need to rule that out regardless--

 

All the best, I hope you find what will help soon--

TMom

Thanks T.Mom,

We have seen physical improvement on antibiotics, and some slow OCD improvement, but then he had an exacerbation when his sister had strep. We have just changed abx to high-dose Augmentin, and his anxiety/OCD seems to have gone UP a bit (maybe there is something else brewing in the house, I can't say it's just the change in abxs)

We just got our CamK II results, it's 168, so it's definitely PANDAS, we don't need the steroid burst to confirm the diagnosis, although I would LOVE to see him 110% back.

I am waiting for Dr. Latimer to call back and I'll let her make the call. She has copies of the Lyme test. I've heard sometimes she doesn't return calls right away, so I'll have to get on the phone tomorrow and chase down my answer. By then she will also have copies of the Cunningham test results, so she can factor that in as well.

Maybe the safest option at this point is to give the Augmentin a few months, re-run the Lyme tests, and take it from there.

 

Thanks for the support and guidance!

 

Isabel

[P_Mom]

Isabel....if your child is on antibiotics..they will always have a negative Lyme test...even if they have Lyme. You need to be off antibiotics for ATLEAST 14 days before testing for Lyme. You can ask any LLMD...(Lyme literate medical doctor....I can give you the number of one.) Or check out Lyme testing...false negatives.

 

Kelly

[matis_mom]

Isabel....if your child is on antibiotics..they will always have a negative Lyme test...even if they have Lyme. You need to be off antibiotics for ATLEAST 14 days before testing for Lyme. You can ask any LLMD...(Lyme literate medical doctor....I can give you the number of one.) Or check out Lyme testing...false negatives.

 

Kelly

Oooh Kelly! Duh! I never thought of that... rats! Now I really am between a rock and a hard place. But I am so, so thankful you brought this up. He has been on antibiotics since July. But then again, the test that was run back then before antibiotics was negative. I just send both Dr. Latimer and Dr. Zackrison e-mails. Maybe all this means is that we just have to stay away from steroids, but it still leaves other options...

 

Anyone else in this forum dealing with both?

 

And yes please, I would like a recommendation for a LLMD.

 

Isabel

[P_Mom]

Well, ...... if the test was run before he went on antibiotics....I'd say he is negative.

 

Why are you considering Lyme? Any tick..or rash...or symptoms???

 

Is it because (I think you said)...he had a small amount of antibody in his system when they checked for Lyme? Well, everyone does...the antibody that shows up in the Elisa screening test for Lyme is not specific to Lyme. There are several antibodies that are present in almost everyone that will show in a small (negative) titer on everyone. If the titer is less than a specific number (I think less than 0.75..(Our Lab)...then you have a negative result. My sons were tested for Lyme...one was 0.47 and the other was 0.18...both are absolute negative results for Lyme, even though the results "suggest" a small amount of antibody present...it is normal.

 

What was your sons result?

 

Kelly

[matis_mom]

Well, ...... if the test was run before he went on antibiotics....I'd say he is negative.

 

Why are you considering Lyme? Any tick..or rash...or symptoms???

 

Is it because (I think you said)...he had a small amount of antibody in his system when they checked for Lyme? Well, everyone does...the antibody that shows up in the Elisa screening test for Lyme is not specific to Lyme. There are several antibodies that are present in almost everyone that will show in a small (negative) titer on everyone. If the titer is less than a specific number (I think less than 0.75..(Our Lab)...then you have a negative result. My sons were tested for Lyme...one was 0.47 and the other was 0.18...both are absolute negative results for Lyme, even though the results "suggest" a small amount of antibody present...it is normal.

 

What was your sons result?

 

Kelly

Thanks all for the replies and support. I heard back to Dr. Latimer, she is not concerned at all. She said it would be dangerous if there was an undetected infection that was not being treated, but since we are doing Augmentin there is no reason to worry.

So, we just started today and he seems totally fine. I am at peace that we've made the right decision and getting ready to enjoy Thanksgiving with lots to be thankful for!

 

God bless,

 

Isabel

[momtocole1]

Dear DC Mom,

 

Can you comment on why it is not good to do the steroid burst if they have tics? I know I have read about it somewhere but I don't remember. If that is not good, that may be the reason that my son had such a bad reaction. Since his OCD has gotten so bad recently he has taken to saying his OCD words over and over. Like blurting out, obscure words over and over. I thought they actually were verbal tics, but he keeps telling me it is the OCD.

On the second night of the steroids it was like he went into complete overdrive and sounded like he had full-blown tourettes.

 

Dr. K. is not concerned about this at all and actually wanted me to continue, but I chickened out because he was so distraught.

 

Thanks,

 

Judy...

 

 

mati's mom-

 

Hi- we are on a steroid burst now, so I thought I would chime in.

 

I think, unfortunately, both docs might be right

 

Like many are starting to think about pandas kid- maybe your son does have an underlying infection. So- of course that needs to be treated. While I am all for the natural, do no harm way of treating illness- I can't help but think this is a situation that seems to need antibiotics. I mean, I think the invention of antibiotics revolutionized medicine for the good- they are definitely needed sometimes, not all things can be cured with a more natural route. So, I think there might be more harm in not trying antibiotics.

 

Secondly- if there are no tics, I would consider the steroid burst. While I agree it may be a bandaid that only lasts a couple of months (but hopefully not- some have found more lasting results)- wouldn't it be nice to have that symptom free time, while you are addressing the underlying infection? Of course, check with Dr L about lymes- I know nothing about that.

 

My dd is on a steroid burst now, after a flare up post H1N1. It stopped the flare in its tracks. Now we are tapering off, so we will have to wait and see how much time that has given us....

 

These decisions are so hard- best on whatever you decide- only you know your child, and I think you have to go with your gut....

[P_Mom]

My son has tics....and when they started to go into overdrive due to Pertussis...the steroid burst literally stopped them in their tracks. I really don't think there is any rhyme or reason to this....you just have to give it a try...tics, no tics, ocd..whatever...to see if it helps. If not, atleast you know...and, any increase is said the cease with discontinuation of steroids (I know some may have had a different experience ) but, that is the general thought. Also, be prepared for an initial increase of symptoms the first few days (if it occurs, it may not)...don't panic..this is normal in many PANDAS children and when the steroids are continued...it usually stops and you end up with a terrific result. Something (now I am reaching way back on what I was told)...but, something to the effect that when the steroids are first introduced, their is an initial "fight" between the immune system and the steroid for "control," thus, an increase of symtpoms due to an increased immune response....continued steroids eventually "win" the battle and you end up with a much improved child. (if they are PANDAS)

[P_Mom]

double post

[T_Mom]

My son has tics....and when they started to go into overdrive due to Pertussis...the steroid burst literally stopped them in their tracks. I really don't think there is any rhyme or reason to this....you just have to give it a try...tics, no tics, ocd..whatever...to see if it helps. If not, atleast you know...and, any increase is said the cease with discontinuation of steroids (I know some may have had a different experience ) but, that is the general thought.

 

Also, be prepared for an initial increase of symptoms the first few days (if it occurs, it may not)...don't panic..this is normal in many PANDAS children and when the steroids are continued...it usually stops and you end up with a terrific result. Something (now I am reaching way back on what I was told)...but, something to the effect that when the steroids are first introduced, their is an initial "fight" between the immune system and the steroid for "control," thus, an increase of symtpoms due to an increased immune response....continued steroids eventually "win" the battle and you end up with a much improved child. (if they are PANDAS)

 

 

PMom, this is such an interesting post-- I have not heard anyone say that there was an increase in behaviors initially with a steroid burst and then a settling results-- Though that has been our experience certainly-- You do have to see it through, thanks for reminding.