DD6 is wonderful right now...should I pursue other tests

[Kayanne]

Quick recap:

 

DD6 was on 5 different antibiotics from March to May because of strep...her OCD and ADD started end of March or the beginning of April. When I found this forum at the end of May, her ADD seemed to morph into Autism and she was getting worse. God Bless you all!!!....because of your advice and Diana's (almost) insistance that I take her to see Dr. Latimer, our Daughter received treatment. She was on prednisone from June 6 to July 18, and is still taking 100mg of Azith daily as a prophylactic. We have a phone consult scheduled with Dr. Latimer next week, and I am hoping to back down to penicillian as a prophylactic.

 

She is now fully returned to us--she still has a mild potty issue, and some very, very minor OCD that I now recognize because of going through this...honestly, most people would not even see it.

 

School started on Monday, and everyone is amazed at her turn around. Her last quarter of kindergarten was awful...they couldn't even assess where she was at at all. Prior to her episode she was an excellent student.

 

The reading specialist assessed her yesterday...up to a reading & writing level for the end of first grade, and she did wonderfully...I cried for a half hour after I got that news!

 

So now here is where my brain has been: Do I go ahead and try to push for the immunological tests, the Cunningham blood test, basline ASO and Anti-Dnase titers?

 

We are definately setting her up with a nutritionist because prednisone can deplete some minerals...and we don't want to just start giving them to her without any direction.

 

We all know the stress of multiple doctors appointments and dealing with blood work...I want to do the absolute best for her...Is it trying to get these answers now, waiting for another episode (I hope like #$@@ that never happens) before I pursue these tests, or is it best not to subject her to all of this while she is doing well?

 

Also, could any of these test results be helpful in general to all of our PANDAS kids?

 

I know the decision is ultimately mine and my DH's, but I would love to hear everyone's two cents.

 

Thank you,

~Karen

[peglem]

I can hear your joy over your daughter's recovery loud and clear. Thanks for sharing that.

 

Here's my opinion:

 

Although I tend to take the everything-is-good-now-don't-mess-with-it approach, I think I'd be tempted to get some testing done, just in case you need a wellness profile as a reference in the future.....hope you don't ever need it, but, its easier to tell what's abnormal if you have a normal reference to compare it to.

[dcmom]

Hi Karen. I am so glad to hear your daughter is doing well! We are in a new mild exacerbation, and trying to figure out what course to pursue... I thought I would give you my thoughts, for what they may be worth.

 

I would consider holding off on backing off of the zithromax, unless you are seeing ill effects from it. My dd was doing great from a steroid burst, untill her BF was diagnosed with strep last week. At that time she was only on twice weekly zith. While I don't think she got strep (we have since upped the abx), she definately has reacted to it. I wonder if she was on daily zith, if that would have helped modulate her immune system a little more. I know is stinks to have them on the med, when they are doing well- but it is nothing compared to an increase in symptoms.

 

Second, I would definately go for the immune system testing. We are trying to get that done, as well. It would be great to rule out any other underlying issues, which some other kids seem to have.

 

As far as the Cunningham test- well, you KNOW she has pandas, right? So, if getting all this testing is as traumatic for her as my dd, I might wait until, god forbid, she has another episode. It doesn't seem you really need a baseline- Dr C kind of has a baseline. And apparently her numbers would be higher during an episode.

 

We did the Cunningham test, and just rec'd dd's numbers. They seem high, but I won't know what they mean until we see Dr L.

 

Good luck! Remember, you are doing your absolute best for your daughter, esp in the face of not much science to help you. I hope she continues to do well!!

[ShaesMom]

I agree with dcmom. I think you should pursue the immune system testing in case there is an underlying issue that hasn't been found yet. More and more kids with Pandas seem to have something additional going on. Better to find out now during a good period then wait until she is sick again. Plus if something else is going on-having that knowledge in advance may help prevent another Pandas episode.

[Megs_Mom]

I agree with all of the above. I wanted to weigh in because my husband and I are having this argument now (except I win, cause I do the 6 hour round trip weekly therapy drive, the OT therapy, the time off work for doctors appts, the work on getting her to take meds without screaming fits, etc.) He feels that she is so good now, that he wants her to just be able to be normal for a while.

 

I live in dread of when it comes back. This is our third episode, and the first time that we figured it out. She has gotten much worse each time - maybe due to lack of treatment, but I'm not willing to take that gamble. If there is an underlying immunilogical issue, that might direct us in terms of IVIG once, or IVIG monthly - then I want to figure that out in our time of peace. Also, if she does get worse, and I start scrambling again, then it will be 3-4 weeks to get the appt, 1-2 weeks to get back test reports, etc. I just can't lose any more time for her, wondering if I steroids and antibiotics are the answer, or if we should move to immediate IVIG. My gut is that we won't learn anything new, but.... So hate it every second - we are continuing on the search until we feel that we have exhausted all the known possiblites, and then we'll go back to taking what we are dealt.

 

I would not do the Cunningham if you are not in an episode - no point, you can always do it later. But I would persue Immunology. It seems to be the latest frontier in this disease. Good luck out there! Susan (Meg's Mom)

[T_Mom]

Hi Karen,

I agree with everyone's opinion that the bloodwork may be helpful and uncover issues. My own vote would be to do it all at one time and then go and get her a treat--new books work, as does ice cream in our family. For us the Cunningham test was very valuable and if you do it at the same time you then have those results to compare as a "baseline" if another exacerbation should come about (I pray it never does.)

[Kayanne]

Thanks to everyone for weighing in. I appreciate everyone's opinions.

 

We had a phone consult with Dr. Latimer on Wednesday night, and once again I was left feeling so impressed with her compassion and demeanor. She chatted with Rebecca for a few minutes, trying to ascertain how much she remembers, what she still fears, what about going potty still bothers her (which in the last two days we haven't seen any sign of). Rebecca would have talked with her the whole hour---such a change---In June Rebecca could barely get two words out at Dr. Latimer's office.

 

She feels that we should be able to manage another episode with prednisone again, and that we are not even near having to consider IVIG and PEX.

 

I wanted to back her off of the azith, so she prescribed 200mg of pen vk twice daily as prophylaxis. I did tell her that I was a little worried that PANDAS symptoms will start to come back if I stopped the azith, and she said that shouldn't happen because we have addressed the brain inflammation by taking the steroid.

 

We were unsure about who (her or our dd's ped.) we should try to get treatment from if this happens again, and she was very clear in stating that we should contact her and she will treat any future episodes.

 

I asked her about getting the tests that I mentioned in this thread, and she said don't bother with baseline ASO and Anti-dnase.

 

As far as immunological testing was concerned, she said that we don't really need to concern ourselves about it right now. She also said that the more doctors who I take Rebecca to the chances of them sending a report to our dd's ped. that this is not PANDAS is greater.

 

And the big suprise to us was that she said to wait another month, and then get the Cunningham blood done because the numbers will still be effected by the prednisone--Rebecca's last dose of that was on July 18!

 

She did ask if we could get Rebecca's CBT to give early and later assessment reports to her.

 

She also wants us to keep her posted--even if she continues to do well.

 

Thanks again to everyone who participates in this forum. I just hope I can help out as much as you all have!!!

 

~Karen

[smartyjones]

Karen - thanks so much for your info. I feel there are a few of us here that are experiencing good times but are concerned about what we need to have "waiting in the wings".

 

Do I understand you correctly that you are doing daily pen vk and no testing at this time? You'll do the cunningham test in a month? Planning to treat an exacerbation with steriods thru dr. l?

 

 

thanks,

Kathy

[Kayanne]

Karen - thanks so much for your info. I feel there are a few of us here that are experiencing good times but are concerned about what we need to have "waiting in the wings".

 

Do I understand you correctly that you are doing daily pen vk and no testing at this time? You'll do the cunningham test in a month? Planning to treat an exacerbation with steriods thru dr. l?

 

 

thanks,

Kathy

 

Hi Kathy,

 

Yes. That is where we are at right now. The only thing that I am not sure of is immunizations for my PANDAS daughter and other kids....I've always passed on the flu vaccine...but this time I feel that I need to know more about it....

 

~Karen

[Kayanne]

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