15 weeks post ivig

[Worried_Dad]

Hi, bmom:

 

Yeah, the book (and Beth Maloney's e-mail) specifically mentioned XR (Extended Release, as you indicated), and I mentioned this to Dr. K. But the 2-week script he called into our local pharmacy was just for regular augmentin (no XR on the bottle, anyway). I plan to ask our pharmacist about this tomorrow and will post what I find out.

 

Haven't really tried any other abx except amoxil at the beginning of this adventure (which helped but didn't lead to full recovery to baseline). Had convinced our (now deceased) original local DAN doc to prescribe 30 days of zithro based on advice from this forum before we hooked up with Dr. K, but he (Dr. K) then had us switch to augmentin after just 10 days of zithro.

 

Did a 5-day prednisone burst per Dr. K early on, and it worked wonders... but the miracle only lasted about 5 days before things went downhill again.

 

 

Worried Dad,

I was just curious if it is regular Augmentin. When I read the "Saving Sammy" book, her son was on what she said was Augmentin XR (I think it is extended release). Does it have to be that to go to high levels? I currently have my son on 1000 mg for a few weeks- 500 a.m. and 500 p.m. I was just wondering if I need to ask Dr. K to switch it to extended. Have you tried other antibiotics? Like Zithromax? if so, did he do any better? What about steroid burst?

[dcmom]

I love that there are other people in the world that think about this stuff all day- like me

 

I just want to chime in with my experience/opinion:

 

In my mind it is a certain strain (or certain multiple strains) of strep that trigger pandas in a genetically succeptible host (this is what the docs say). I agree with this because:

 

I have two girls: one pandas ocd, age 6, (cam kinase 161%), one non pandas , age 9, (109% cam kinase). Prior to pandas, each of them has had strep throat one or two times. Both times for both of them, they had "classic" symptoms: fever, sore throat, tired, etc. No behavoir issues at all. This was all before 2009.

 

Then in 2009, pandas dd had an overnight onset (that continued downhill quickly) of urination issues, ocd, etc. We finally connected the dots, and got her tested for strep. She had a positive culture. Many children in her class contracted a similar strep (extremely low level, or not noticeable symptoms) that season.

 

Two weeks later, non pandas daughter was a little tired one weekend. I panicked and had her cultured (never would have considered the doc for this before pandas). She also had strep! A couple of kids in her class also came down with a similar presenting strep.

 

So, both my kids have had "normal" strep episodes prior to pandas hitting here. My non pandas daughter had the same strep, and presented with no symptoms this time as well, but (so far, thankfully) has not developed pandas.

 

Of course once pandas is triggered- it's a mess...

[bmom]

Worried Dad,

I just read more of your posts and am so thankful for your sons recent improvements. I actually was thinking of you guys when I read the "Saving Sammy" book. The things in there sometimes reminded me of your son. I have one question. How long did it take to see improvements with the higher dose Augmentin? Was it immediate or day 10? Thanks!

[Worried_Dad]

Hi, Faith:

 

Yeah, our son has essentially missed 2 years of school (6th and 7th grades). We did homebound schooling (with a tutor supplied by the middle school who came to the house a few hours a week) and managed to squeak through 6th grade. August 2008 (before start of 7th) is when our son had his overnight explosion of PANDAS symptoms (massive OCD, tics, anorexia, rages, crying jags, suicidal talk, etc.). He was utterly crippled and incapable of any kind of schooling until after IVIG round 1 (October 2008). We got him back to "semi-school" for a month (6th-period Science class as a start), but then he had another minor exacerbation that January (after 3 days of school following Christmas Break). That set him back, and he could not return to class. Then the March 29 "mega-exacerbation" made him a virtual prisoner in a few rooms of our home due to massive OCD contamination fears.

 

Given all of that, we didn't even think about sending him back into a public school setting this year. My wife is his teacher now, using Keystone Middle School online curriculum. (My wife's a stay-at-home mom by choice, and we're paying to put our 3-year-old in full-time daycare so she can focus on our PANDAS son's schooling.)

 

As far as his relapses: we're honestly not sure if he contracted strep again from outside sources or just still had strep hiding in his system, waiting for a chance to resurge.

 

Hope that helps!

 

 

thanks worried dad,

so from that I see your child DOES at least show titers that move upward and downward and have been considered hi,......so that might be one clue. wondering if all those who manage to have titers that are up there seem to have, let's say a more complicated case that may take some time to respond to treatments?

 

That you say doesn't show symptoms to strep or culture positive would be another category. But yet, he did get an upper respiratory illness that did show? ..... So again, I'm wondering how kids who actually "get" the strep do (or how severe their symptoms are) vs. those who do not get it or show symptoms or positive swabs/cultures, in other words are probably just carriers.

 

So far our experience is low titers two times (talking 60) and doesn't get strep throat on any regular basis or get positive swabs and cultures. I am only aware of one time the doc diagnosed strep for my son and he WAS sick and WAS showing an exacerbation of symptoms (more than 2 yrs ago). after that, just chased our tails.

 

btw, did you have to take him out of school because his symptoms were bad? do you homeschool?

 

**just as a reminder, I'm new on board this train and don't know where we stand yet, and havn't got our cam kinase levels back yet. I'm just trying to play Sherlock Holmes in the meantime.

 

Faith

[Worried_Dad]

I'd say it took about 5-7 days to be obvious. My wife and I started noticing the difference after about a week, and our son himself said it "was really helping" at about the same time.

 

FYI: at an appt with our new local DAN doc this past Friday, our son told her that the augmentin "was making things [OCD-wise] a lot easier." May not seem like much... but our son has been very pessimistic during this latest exacerbation, and this is the first time since last December he has said things are getting easier. So to my wife and me, this was HUGE!

 

 

Worried Dad,

I just read more of your posts and am so thankful for your sons recent improvements. I actually was thinking of you guys when I read the "Saving Sammy" book. The things in there sometimes reminded me of your son. I have one question. How long did it take to see improvements with the higher dose Augmentin? Was it immediate or day 10? Thanks!

[bmom]

That's great! I will pray that things continue to improve and you will turn out like Sammy. I know it was several months total to say he was back. You guys could really use a break from all of this.

[faith]

okay, quickly for dcmom,

just to satisfy my curious mind,..the dd with no pandas symtoms, you mean no tics/ocd, etc? right? but you had the cam kinase tested at the same time just to see what would come up?

[dcmom]

Hi Faith-

 

We had non pandas cam kinase tested because since strep she has had stomachaches, and has been irritable. I chalked it up to the stress of pandas in the family. But, after reading some info on Dr K's site, I was concerned, so I had her tested. Cam Kinase: normal, haven't gotten other numbers yet. So, I am now convinced it is sensitive stomach (possibly out of whack from strep- it is improving), stress and looking for attention because of pandas sister, and the emergence of an almost-in-middle- school- tude (ugh!)....

 

I was so relieved when the numbers were in the normal range. I will continue to keep a close eye on her, though.

[dcmom]

I guess I have, like all of us: PPPS (parental pandas stress syndrome). Anyone have a better name?

[greeneyes48072]

EAmom, yes Dr K uses Gamunex. What does that mean it is not compatible with saline? Is there another substance they hydrate with via IV? Maybe I got it wrong, Worried Dad, do you know? You did it with Dr. K. too. All I know is that before and after the infusion they gave him fluids via the IV (a bag before and after) to hydrate him. Dr K said it was because the better hydrated he was, the lower the likelyhood of headaches as a side effect. I'm not in the medical field, so maybe it was something else...but now you have me worried...but Dr. K has been doing this nine or ten years, I would have to think he would know that.....oh my....

[EAMom]

EAmom, yes Dr K uses Gamunex. What does that mean it is not compatible with saline? Is there another substance they hydrate with via IV? Maybe I got it wrong, Worried Dad, do you know? You did it with Dr. K. too. All I know is that before and after the infusion they gave him fluids via the IV (a bag before and after) to hydrate him. Dr K said it was because the better hydrated he was, the lower the likelyhood of headaches as a side effect. I'm not in the medical field, so maybe it was something else...but now you have me worried...but Dr. K has been doing this nine or ten years, I would have to think he would know that.....oh my....

 

Well, it's a little difficult to tell exactly what that means. If you google you will find stuff like "Gamunex is incompatible with saline". I don't know if that means you shouldn't hydrate someone with Saline before they receive Gamunex. Definitely you should not mix the two together in a bottle (eg dilute the Gamunex with Saline)...you should use D5w for that (a dextrose solution). But, like I said, dh wouldn't even let the nurse flush dd's IV with Saline b/c of this, and the nurse was like, "Oh I forgot." (This doesn't seem to be the case with other brands of IVIG, which Stanford uses more often.)

 

We asked about hydrating beforehand (IVIG done at Stanford) and the immunologist though that would be a fluid overload for dd. However, we got 1gm/kg per day (over 2 days) which is a little more than Dr. K. uses. So, for us, we just got Gamunex. No Saline.

[coco]

EAmom, yes Dr K uses Gamunex. What does that mean it is not compatible with saline? Is there another substance they hydrate with via IV? Maybe I got it wrong, Worried Dad, do you know? You did it with Dr. K. too. All I know is that before and after the infusion they gave him fluids via the IV (a bag before and after) to hydrate him. Dr K said it was because the better hydrated he was, the lower the likelyhood of headaches as a side effect. I'm not in the medical field, so maybe it was something else...but now you have me worried...but Dr. K has been doing this nine or ten years, I would have to think he would know that.....oh my....

My daughter age nine did ivig w/Dr K in August. Day one was fine, end of day 2, bad headache, vomiting, slight fever, all lasting about 6 hours. Then, one week later the same symptoms, again lasting 6 hours or so. In the meantime we have discovered my daughter has SAID and will be receiving ivig locally starting this month. This immuno uses gammagard. Given that my daughter had the above symptoms with Gamunex, I'm not sure if I should request the same stuff or feel ok to switch??

[KeithandElizabeth]

Hi Coco:

 

Good question. Our son was given Gammaguard (spelling?) for his first IVIG at Dr. K's dose, but with a local doctor and he did not have any symptoms. He is having his second IVIG, at a much lower dose, this Tuesday and will be given Gamuenex. I will let you know if we see any difference.

 

How is your daughter doing now? Do you mind if I ask what immunological deficiencies your daughter has?

 

Elizabeth

[greeneyes48072]

I just called the manufacture...it's no problem to get saline before or after. It just can't be mixed with the IG solution, or given in the same line at the same time....phew.

 

EAmom, I didn't comment on the other ?'s before. PEX is not an option for us. The risks are too high for us to consider that. My son weights about 70 lbs. He can do augmentin, so he is on 500mg of azith twice a week Mon/Thurs. Back when he was on it daily, prior to IVIG it was ineffective for his symptoms, but if increasing that could help in conjunction with what the IVIG can do, then I have no objections to trying it.

[coco]

Hi Coco:

 

Good question. Our son was given Gammaguard (spelling?) for his first IVIG at Dr. K's dose, but with a local doctor and he did not have any symptoms. He is having his second IVIG, at a much lower dose, this Tuesday and will be given Gamuenex. I will let you know if we see any difference.

 

How is your daughter doing now? Do you mind if I ask what immunological deficiencies your daughter has?

 

Elizabeth

Hi Elizabeth,

 

We are seeing good progress since our first two-day ivig treatment with Dr. K. We are at the 8-week mark right now. The healing has been sawtooth. There are up days and down days, but the ups are longer and the downs are shorter. Tics and OCD are now about 50% better. Let me share a little history before I continue with recovery stuff:

 

My daughter was diagnosed with pddnos at age 5, after many doctors couldn't really come up with a diagnosis that was solid. We were uncomfortable with that but had no choice at that point. According to Dr. K. and her immunologist we realize now that she most likely has had pandas since she was 2 years old. She had many ear infections as a toddler, but was never tested for strep. Ever. In her case, the "sudden onset" was failure to hit developmental milestones...not terribly obvious, but subtle things that we would notice. She also developed what we now know were OCD tendencies, i.e., could not walk on mats, had trouble running straight across asphalt as it changed to concrete (color difference) and she carried a little red lego with her wherever we went...for years. I had red legos in the car glovebox, in my purse, coat pockets...you get the picture. She also failed to develop fine motor skills very well and her language was behind. She was fearful/panicked over the strangest things, pegboard holes behind supermarket shelving, men with beards, etc. Very sensitive to noise. She was also diagnosed with mild MR, which we feel was not true either. Outside of standard testing she was bright and quick in so many other areas, but alas, that's not taken into anyone's consideration. She was also very connected to people and had great eye contact.

 

In the past three years the OCD became more and more debilitating. Tics stronger and longer. Family life was falling apart. This child of mine was turning into a person I did not know. If pandas has not come come along we were headed for psycho drugs and who knows what else.

 

So, here is a little girl that has had pandas for most of her little life. The big mystery here is does ivig work as well for kids who have had it for 7 years? How far can we bring her back? Are the learning disabilities related to all the malfuntioning in the basal ganglia? I asked Dr. K. where does the PDDnos stop and the Pandas start, symptom wise? He told me: "You tell me!" He believes that all this pddnos garbage is all pandas, to a great degree.

 

A year and a half ago she was hospitalized for a URI. Given heavy IV antibiotics for 3 days in hospital. When she came home, it was unbelievable. ALL sypmtoms were gone for several months. School could not believe the change in this girl. Learning concepts were being introduced and mastered in a week, which used to takes months. That was a good run for all of us. Then she got another infection, and bam, right back where we were. No one in the hospital ever did a strep test. No one mentioned Pandas. Her pediatrician wanted to put her on depakote....I revolted. Some of these doctors truly do not know what they are talking about.

 

Some numbers: Her CamK was 188. Her DNASE was 965. Her ASO titer was 295. She failed 13 or the 14 pneumo strep 14. She failed the tetnus and is borderline fail on Lyme's. Her IGG subclasses were passing 1 and 3, failing 2 and 4. Her immunologist diagnosed her with SAID, "Specific Antibody Immune Deficiency" and recommends ivig monthly for at least 6 -12 months.

 

Dr. K. wants us to wait for another month before trying another ivig. Our immuno says if it was his daughter he would do it now. We feel like we have wasted enough time already and are scheduled for this wednesday to do another treatment. we finally got insurance to cover so I think we would be foolish not to go ahead.

 

Sorry for the l-o-n-g post...believe me I could go on forever We saw Dr. Leckman at Yale, and her referred us to our immuno, who is a livesaver. you guys gave me Dr. K!!! I feel like I should put this on a separate thread because I am so interested in communicating with parents who have a child with a similar diagnosis.

 

I did chat with one gal whose daughter was the same as mine and is now FULLY RECOVERED, she did her ivig with Gupta. But, sadly, I have not heard from her in a while.

 

YOU PARENTS have been a Godsend to us! I owe all my knowledge and awareness to each of you!!!

 

hugs to each of you,

coco

 

P.S. Her handwriting is now AWESOME and she always had horrible handwriting. That in and of itself is a miracle!!