Jump to content
ACN Latitudes Forums

DaleS

Members
  • Content Count

    20
  • Joined

  • Last visited

About DaleS

  • Rank
    Member

Profile Information

  • Location
    livonia, mi
  1. An 8 minute segment is posted on http://abcnews.go.com/2020/ I don't know if this is the full segment.
  2. 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
  3. 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
  4. 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 com
  5. 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 fluid
  6. 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 o
  7. 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
  8. 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.
  9. 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 a
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. When was your appt. We are with Dr. K right now
  15. 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.
×
×
  • Create New...