Our doctor appts yesterday

[pixiesmommy]

Yesterday was a day packed with appointments.

 

First, the chiro I am SOOO hopeful about. He spend two and a half hours with us listening to our story (aside from the 30 minute chat we had on the phone one night after he was off work, just to return our call!!!) and I felt so amazed that someone was interested, curious and KNOWLEDGEABLE about what we were saying!!!

 

-He knows a lot about the blood-brain barrier and gave us something called GABBA to test if there is currently a breach. We will do two nights of this. If there is NOT a breach, it won't do anything. If there IS a breach, it will make her feel calm, happy, sleepy.

 

-He did not freak out that we had done IVIG and knew what it was, etc.

 

-He ran blood work for vitamin deficiencies, thyroid, a CBC panel, lots of iron tests and some other things. There were about 20 tests in all.

 

-He read and made copies of the medical records we brought in. He found lots of things in the immunologists' records that were never pointed out to us, like high Lymphocytes and the fact that she was anemic. This was 2 YEARS ago!! No one ever told us she was anemic??? Ugh.

 

-He did not jump in with any "quick cures" for anything and wants to get her iron up if we need to, etc before we do anything, so her body can handle things.

 

-He did a very thorough exam and said very little about his findings (probably because he didn't want to scare her, but also because we had been there through lunch and my 2 yr old was DONE by that point!) but he did see Adrenal Fatigue when he was doing her eye exam and said he is not shocked at the light sensitivity she has, given how fatigued her pupils are.

 

-He wants to run other tests to check for gluten intolerance, given that the bloodtests we had done previously were to see if she had Celiac's, not ones to see if her gut was reacting inappropriately and this could be worsening things in her brain stem. We'll be doing a stool sample test for this. He also wanted to do a leaky-gut test which is a test where we collect urine for 6 hours to see the pattern of how she processes sugars.

 

 

So now, we run the bloodwork and get back to him on how she reacted with the GABBA and get a treatment plan. He does lots of left brain-right brain communication work for SPD and other neurological disorders, so I am really hopeful that this is going to be a BIG step in the right direction for her.

 

--

 

Then on to see Dr K who felt like the IVIG was really working, given that we have seen a total disappearance of major tics (the writhing, the big shoulder tic) and bed and day-wetting that she was having daily pre-IVIG.

 

The interesting things to come out of that convo were:

 

-He does not want to up her abx due to the fact that she got IVIG and THAT was the treatment. He believes in the prophylactic dose if in conjunction with IVIG, but for those using abx for a treatment, you would want a higher dose.

 

-He thinks that some of the rage is learned behavior and wants to make sure her schedule is very strict for the next 4 weeks so we can see what patterns emerge and what may be behavioral/learned rather than PANDAS illness-related. Of course we will also keep her in therapy for this and the chiro will be part of this.

 

-He wanted to see her back in 4 weeks if the fevers continue (they still spike) to see if there is another underlying issue that may or may NOT be related to PANDAS.

 

 

That is all for now. I felt like both appointments were really positive ones and I wasn't trying to convince anyone of anything- that they knew where I was coming from and were truly trying to help us, which is a total relief from where we were even a month ago.

 

-Manda

[EAMom]

Then on to see Dr K who felt like the IVIG was really working, given that we have seen a total disappearance of major tics (the writhing, the big shoulder tic) and bed and day-wetting that she was having daily pre-IVIG.

 

The interesting things to come out of that convo were:

 

-He does not want to up her abx due to the fact that she got IVIG and THAT was the treatment. He believes in the prophylactic dose if in conjunction with IVIG, but for those using abx for a treatment, you would want a higher dose.

 

Ughh. So PANDAS kids can't have more than 1 treatment at a time? It'll be interesting to see if Pixie regresses back on 1x a day Augmentin. (Is she still on 2x daily?)

[KeithandElizabeth]

Wow, thanks for sharing all your information.

 

Our son, Quinn, is also low on iron and vitamin D and his lymphocytes were high as well. I kept meaning to post to see if anyone was familiar with the high lymphocytes. I think it just means that they are fighting an infection?

 

Great tip about the GABA!! I have read that it is very calming. I could use some of it myself!@!@

 

We are also on 250 mg. of Augmentin a day. Our immunologist also said that the IVIG is supposed to help battle the infection, hence we do not need the higher dose. Who knows, everyone seems to have a different opinion

 

Let us know who the GABA goes.

 

And what great news that the IVIG was so helpful to Pixie!!!

 

Elizabeth

[ShaesMom]

Great news all around Manda!

 

I also think the high Lympocytes are just an indicator of infection. My dd were often high.

 

My dd continued to spike fevers after her first IVIG as well. They have since disappeared-I believe this occured after her third IVIG. Maybe the fevers are an indicator of additional infection or immune issues.

[EAMom]

We are also on 250 mg. of Augmentin a day. Our immunologist also said that the IVIG is supposed to help battle the infection, hence we do not need the higher dose. Who knows, everyone seems to have a different opinion

 

Yup...supposed to. But we all know our kids don't necessarily react like they are supposed to.

 

But I can't help but wonder if Swedo/Dr. K. were more aggressive with the antibiotics (including post-IVIG) if their sucess rate ("much" or "very much" improved) would go up from 80% to 90-100%.

 

My feeling is that it is so difficult for most to get to the point of IVIG, it is so costly (and whether insurance covers it or not, IVIG is a limited resource), never mind the trauma of a "set-back", and since there are potential risks to this procedure (how great is a matter of debate), that if I am going to do it (which we did), I would want to give it every chance possible chance of succeeding. If increasing the dose of antibiotics to full-strength might help achieve that (minimal down-side IMO) then it is something I am going to do.

 

Also, IVIG's infection "battling" properties aren't going to last beyond 1 mo. out...so what happens then?

 

(I guess I am in a venting mood today!)

[pixiesmommy]

Weeeellll... it sounds like he wants to see if her OWN immunities kick in past one month.

 

The timeline is something like this from what I can gather:

 

According to Dr K- the IVIG will be out of her system in another 6 weeks (this is versus the Immuno who said 4 months?) and she should start making her own antibodies (I realize I am dumbing this down)

 

IVIG can be considered success or failure only after 3 months

 

He will consider repeating a dose, but will only do a second one (none thereafter) but not until 9-15 months or so (this is because he feels the younger you are the better you respond, so for anyone in another age bracket, this may be different- I'm just going on what he told us for a 9 yr old who has had this for, in his opinion, 2 years or so.)

 

SO I think the thinking in not upping the abx is that he wants to give her enough to be SOME help but not to mask studying what she may be producing on her own.

 

But so much conflicting info is making my brain spin, so I will have DH chime in to this post too.

 

(Yes she is back on once/daily now for Augmentin, but we saw no change in doubling her dose for 10 days.)

[Suzan]

I am sooooo glad you feel hopeful and have some things to work towards. YAY Mom!

[bronxmom2]

Is this GABA the same one you can just buy at the health food store?

[EAMom]

(Yes she is back on once/daily now for Augmentin, but we saw no change in doubling her dose for 10 days.)

 

When did you start to see an improvement relative to when you doubled the abs? You don't think the increased abs could have jumpstarted things at all? For a while things were really bad...and now they are getting better. Didn't the increased abs came somewhere between those 2 points?

[T_Mom]

I am joining in the venting here:)

 

Pixie--WONDERFUL news that the treatments have had a good effect! Thinking back to your terrifying posts when in crisis this new response is wonderful to hear!

 

IN the end it, I think, it only matters that our children progress, get well, and are OK again--

Given that, I have to agree that I'd be throwing antibiotics at my child:) (or whatever else is necessary) if I saw the least bit of a slip-back--to try to get a handle on whether or not those antibiotics can provide additional help.

 

The effects of antibiotics are becoming clearly a cutting edge response to PANDAS (Sammy, our d, and others--full strength abx has driven away tics and OCD, how amazing is that!!!)

 

I wholeheartedly agree, and have thought the same thing that EAMom expressed when she said:

I can't help but wonder if Swedo/Dr. K. were more aggressive with the antibiotics (including post-IVIG) if their sucess rate ("much" or "very much" improved) would go up from 80% to 90-100%.

 

I have thought the same thing--

 

In fact, last year we had no idea that FULL strength antibiotics would be of use, as the "studies" have been prophylactic use--(and Beth Maloney's book was not yet out--) We literally stumbled on the fact that full antibiotics made a difference through use--and then the brilliant suggestion by EAMom and Diana to try a month of full strength--thank you ladies!