DaleS

An 8 minute segment is posted on http://abcnews.go.com/2020/ I don't know if this is the full segment.

Our dd had her first IVIG with Dr. K 4.5 weeks ago. We had several discussions with him regarding the expected outcome and he specifically told us at that time that he is looking for 75% improvement in 3 months but has seen better than 90% improvement on occasion, although I would expect that there is a huge variation in each parents assessment of what 75% improvement is. He continued to say that if she is at 75% in 3 months, he would like to see continuous improvement over the next 6 months (9 months total) but that we should not expect her to reach 100% in 9 months. If she plateaus at 75%, we may have to do another IVIG. I also believe he also told us that 87% of his patients achieve 90% in the 9 months. I don't ever recall him saying anything about a cure and in fact, he said that only a relatively small percentage truly achieve 100% permanently while still in their adolescence. I know this sounds discouraging but when our dd was unable to function from hour to hour without going into extreme rage, living at 90% with occasional OCD symptoms would a blessing, as long as it doesn't interfere with daily life. Would I like to see her at 100%? Absolutely. And I am hoping she eventually gets there, even if it requires that she outgrows this when she is an adult. I also got the impression from our consults with Dr. K. that he doesn't believe that abx is the answer. However he did prescribe Augmentin 500 1x/day for at least 6 months after the IVIG and indicated that she would probably be on it until she was an adult (21). I got the impression that he wanted the abx in her system when and if she was exposed to strep (or another infectious agent). The abx is a preventive precaution and not part of the therapy. I am sorry that you got a different impression from Dr. K. He has treated hundreds of kids with IVIG and if it truly was a cure, he would have said that everyone treated improved to 100% and all of the other doctors would believe the same. This is not the case but he believes, from all the cases he has had, that IVIG is one of the best hopes.

Buster, Do the answers you get from this survey allow you to run correlations between the different questions? For example, it might be useful to know the success rate of IVIG (from original question #3 – IVIG put into remission) and overlay with Lyme. Or, for example, IVIG success rate and age of onset (and age of IVIG vs. onset). There may be hundreds of combinations of these questions and it may take a statistician to analyze (are there any smart statistician mothers out there?). Just knowing the % that of confirmation via IVIG, ABX, etc. may not be as useful as knowing the % with, say for example, early treatment. So my original question, stated differently, is: are you able to match the answers of all the questions to each respondent so that different correlations can be made or do you only know the % of each answer to the individual questions? FYI, I have been trained in statistical methods of problem solving (specifically six sigma, Taguchi methods of design of experiments) which are very useful in finding correlation and confounding causes with small size populations (experiments). To get the most out of this type of a study, it would be ideal to make the question/answers as specific as possible and limit the answers to 3 (not including don't know).

Buster, Thanks for this explanation, again, but what I would like to know is if there are other theories regarding the mechanism of BBB breach and neural tissue inflimation. Early this month, our dd had her first IVIG with Dr. K and we asked him about this. He indicated that your description is only one theory and that he believed that there may be another mechanism. I didn't understand everything he said (partially due to his accent) but his description had something to do with the antibodies causing the BBB breach and allowing other invaders through to cause neural inflammation. Any comments on other theories would be appreciated.

Our dd just received IVIG from Dr. K. last week. Her dose was 1.5 g/kg. 2 g/kg means that your child will get 2 grams of IVIG for every kg that your child weighs. For example, if your child weighs 100 lbs, that equals 100/2.2 kg or 45 kg. Your child would get 45 X 2 or 90 grams of IVIG. As I said, the dose of IVIG that our dd received was 1.5 g/kg, half one day and half the second day. I believe this is Dr. K's regular dose and 2 g/kg is a high dose. One thing to note. Make sure your child is well hydrated before, during and after. Dr. K. pushes several hundred ml of IV fluids before and after the IVIG. This, and making sure your child drinks a lot of fluids prior to and after each day of IVIG will reduce the severity of headaches.

Unfortunately our dd is still raging today. It is difficult to get her to eat and take her meds although she took them better today than yesterday. The only good thing is she is sleeping a lot which limits her waking time in which she can abuse everyone in the house. One week before our dd's IVIG, the whole family went to get their titers drawn. Everyone was within norm except mine which I found out today (ASO – 272 A DNaseB - 253. My doctor new they were above norm but was not concerned so he didn't call me until today. He didn't completely understand the situation we are in. I am on Aug 875 2x for 10 days now. Ironically, our DD has always though that I was the contaminated one in the house. Can anyone give us their post IVIG experiences? How long did the raging and abusive behavior last?

Unfortunately, our dd is on a raging roller coaster again ever since she woke up. She did some things tonight that she has never done before (I won't go into the graphic details). With her long sleep, her abx schedule got messed up. Don't know if this is the cause or if it is Post IVIG Stress Syndrome (hopefully this acronym, however appropriate, won't stick). She is calm now but back to doing all of her OCD stuff (counting and tapping 3s, 7s, 15s, 31s, clearing her throat, etc.). She had a new swearing tick (every other word was damn) last night before her 15 hour sleep but that has not come back. This better get better soon.

As of 1:00 our ds was still sleeping. She has now slept 21 of the last 26 hours. At least she is sleeping through the headaches.

Our DD developed a rash a little more than 1 month after starting abx. She was on Augmentin ES (amoxicillin/clavulanate potassium) 1500 2x per day and switched to Aug 875 2x after approx. 30 days (Note: our DD is 75 lbs, ASO in the 200-300 range and ADNAse in the 550-650 range). The rash developed shortly after switching to 875. The rash we saw was similar to the Scarlet Fever rash (fine, red, rough textured) which is a caused by exotoxin released by Streptococcus pyogenes. Our Ped said this it may be a reaction to the Abx finally "finding" the strep in her system. The rash went away after a few days. Have your DS's ped look at it for similarities to Scarlet Fever rash. I should note that at the time of the rash, we were a week from IVIG. Dr. K. was not concerned about the rash (as well as other new symptoms we were seeing the week prior) and brushed it off. Our DD IVIG finished yesterday. I don't necessarily want to tell you what to do but you are not the only one that is nervous about lowering the abx. (Dr K wants us to lower to 500 1x/day when we get done with our current script of 875 2x) Unless the symptoms go away completely, IVIG should always be considered an option. Also, Dr K. told us that the titer levels don't necessarily correlate to the symptoms. Kids with relatively low level can have much worse symptoms than those with high levels.

According to the rules, they will announce 4 finalists on or around 6/28. The finalists will be contacted prior to this date using the e-mail and/or phone number provided when submitting. IMPORTANT: The finalist has 24 hours to respond when contacted or they will pick a runner up. Please make sure you check your e-mail daily if you submitted. Voting is between 6/28 and 7/1.

We missed the evening pickup also. The lab put extra ice packs in it and we shipped it that night (after the deadline) and it arrived first thing in the morning one day later. This made it 36 hours old. Since it was centrifuged (as was ours), you are in better shape. Put it in the fridge, put the ice pack that came with it in the freezer, pack it all up in the morning and ship it. It should get there Friday AM and you should still be ok.

The headaches and nausea have started. She is now 8 hours post IVIG. We (and when I say we I mean my dw since my mere presence send her into a rage) are having a difficult time getting her to drink, eat, or take any meds. Both of them are out in the car now so I have no idea what is happening.

Keep bugging him and his office. Send him a detailed e-mail of your sons symptoms daily (or more often). We were having our IVIG postponed (2 weeks) and kept in daily contact with him on issues and he got us in 2 weeks earlier. He was out of the country the last 2 weeks, in this week, and I believe he is out of town next week also. I know he is busy right now but keep bugging him. He has always responded quickly to us, even when he was in Croatia last week.

When was your appt. We are with Dr. K right now

Day 2 Dragged our daughter kicking and screaming to OBSC. We were expecting the hotel to call the police on us this morning. Our dd doesn't want anything to do with either of us so Dr. K and the OBSC staff is taking care of her now (we have Donna not Launa). She has been relatively calm, took the medication they gave her, and now she is sleeping with less than 2 hours to go. Hopefully she will be good after she is done. Tell Patrick that Dr K says hi.

She has calmed down a little. Still having OCD issues but not as agitated. My DW is getting her food now. Hopefully she will eat. Two more hours to go, today.

We are in Oak Brook Surgical Center right now. Our DD is about 1 hour into IVIG with Dr. K. She is not taking it well. She is having a lot of sensory issues with the IV tape, the hair cap, gown, etc. She is extremely agitated. She isn't even laughing at Dr. K. This is going to be a long 2 days.

Is anyone currently on Cefzil and does not have insurance covering prescriptions?

As usual, my dw spoke too soon. This evening, and the evening is just beginning, has seen extreme outbursts. We finally got our dd to take her abx and ibuprofen. She has not eaten much today. Her outbursts are no longer isolated to our house. She is calming herself down right now in the car but I am not convinced it will last. Has anyone seen blueness in the lips during rage events? She does have dilated eyes but I noticed the blue lines in the lips this evening.

Sorry we haven't provided an update from our ER experience but it has been a long, long weekend for us and we have not had time to do anything but care for our dd. We got home after 1:00 AM (Sunday morning) from the ER. Our dd "slept" in the car all night but we don't know how much sleep she actually got. She got out of the car at around noon and immediately went into an outburst. My dw takes the brunt of the care since any contact or conversation with me is pure contamination and only prolongs the outbursts. The only good thing about this is a threat by me to touch our dd's medication usually gets her to take it. I feel so useless but my intervention just makes things worse. My dw has had to take care of our dd all day now and it is taking its toll. We are still trying to get her to settle down but like usual, she is coming up with one thing after another that isn't in place, not right, etc. It is almost 1:00 am and She isn't screaming right now. Good news. Dr. K responded to our cry for help and we are now scheduled for IVIg on the 15th and 16th. Our dd has to get some more bloodwork before the IVIg and I don't know how that is going to go. After her experience in the ER (they drew some blood and absolutely tortured our dd by stabbing her over and over until they got the vein – the worst blood draw I have ever seen) she said she is not going to let us stab her with a needle for 1 month. Tomorrow will not be fun. The 15th can not come too soon.