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qannie47

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Everything posted by qannie47

  1. Wonderful story. Thanks for sharing. I agree, there really is a lot of compassionate human spirit out there...sometimes we just need reminders...
  2. PR40 some background. My ds was diagnosed almost one year to date of his IVIG treatment. He had his IVIG 6/13. Interestingly enough, he appeared to have finally recovered, (1 week of no Panda's symptoms prior to IVIG). This last episode, (his 4th) was not his worst, but pretty bad and lasted the longest. It was the result of a 6week of tonsillitis and then went right into two weeks of stomach flu. He just could not shake it and ended up in ER for dehydration. It is a bit of a blur,(he gave the same flu to his twin simultaneously) but this last episode started right after St. Patty's day, right after he threw up all over my carpet for the last time....It lasted until 6/8 (the Pandas). Then the calm....There is always the calm for him when it ends. Pretty much everything goes away overnight. He goes back to being a reasonable kid. Nothing out of the ordinary. I can almost feel the difference when I walk into the room. Start & stop. I KNOW. What has struck me is that the last two episodes, it is his twin brother whom has approached me and has noticed the difference almost immediately when an episode is starting. I believe his statements were, (both times), within minutes of waking, "MOM HE IS ACTING CRAZY AGAIN....CALL THAT PANDAS DOCTOR!!!" LaurenK I did ask doctor K about the regression week 7....He did not mention anything about die off. He said that he believes that it is a part of the healing process and that we could experience the wax/waning until week 12. He did say, that usually, with the younger kids....a transformation of all symptoms gone are seen by week 8. I am not sure exactly what that means....when I have read up on the wax/waning, or healing process, it appears that nobody really knows......
  3. I would call and ask for the docs voicemail. Get past the front line. The docs have these people in place because they often themselves have a hard time saying no......I work by appointment so I know....If he gets a message from you directly/via voicemail, he may cave and tell his receptionist to fit you in...He may not even know how badly you are trying to see him....
  4. Neti-pot: I use it myself and know for a fact that if you use distilled water/nursery water, there is no risk for infection. Also, If you microwave it (without water in it) for 20 sec, you will kill any bacteria on pot. One suggestion, there is a product that is like a saline spray but is an aerosol form. It is wonderful. It sprays a really fine mist and the ph is perfectly balanced so there is no burn. It is neal...something or other. It comes in a small metal can and the applicator is longer and skinnier so it really fits nicely into a child's nasal passage. It is a little pricey but worth it. I have used this on my ds three times a day during allergy season and it works well. How about allergy shots?
  5. We are in our 9th week post IVIG and things look good!!! OF these 9 weeks, my ds only had 5 bad days. Which mostly happened during week 7 or so....As of this moment, my ds has gone 14 straight days of NO Panda's symptoms AT ALL. One thing I did not expect to happen so fast was recover of short term memory. This has been a rather, "WHAT!", kind of moment for me. I have always just sort of thought of my son as a kindred "space cadet". But sure enough, recently he is remembering where he has put his things, able to better account for his day at camp, things like that...very interesting. The only thing that still is hanging around a bit is some bedwetting. However, I think at this point since it has gone on for so long now, his brain/body is no longer trained to wake-up. So I am going to buy him an alarm clock....if this is all we ever have to be concerned about...YIPEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, I just wanted to share our experience so far with you all, since I know when I was researching I was very interested in any info I could get about IVIG experiences.. Thoughts and Prayers for all....
  6. Hi. Who is your Panda's doc? And what does he say? I only ask because, my ds7 whom was a total space cadet, and retention rate highly questionable, has shown remarkable improvement with his memory since his ivig 8 weeks ago. How long since his ivig? Any improvement at all from ivig? Dr K said that short term memory would take awhile to come back but I am already seeing improvements....
  7. HI, I have a son who has Pandas, and a son whom is borderline adhd (no meds) and on the ODD side of the fence. I have for the past 4 weeks applied Howard Glasser's, Transforming the difficult child, the Nurtured Heart Approach....it has worked wonders...especially for my ODD child. I promise it comes with insights and techniques that will change your world. It comes in an audio version as well. I watched it, applied it, and within two days, saw results...My kids have flunked out of every other behavior mod program for 3 years now...This one works...pm me if you would like....qannie
  8. HI, you have received a lot of good information here...so not much to add. Except to say that your son sounds identical to my son who was diagnosed with Pandas age 6 as well. He is now 7 1/2. I would recommend going to IVIG as soon as possible if Dr. K is convinced about Pandas. I recently read a collaborative report showing the outcome of 200 Pandas kids from various studies. It showed how the vast majority who had IVIG within their first year of over the top symptoms, improved remarkably with IVIG and did not have to have a second. I know that you are able to recall symptoms in retrospect, but it is important to know that there is a difference between subtle symptoms in the past (because they can always be found), and the first "major" episode, typical around age 6. So my point is, I think I would push for the IVIG as soon as possible. My son just had his first IVIG 8 weeks ago, (timeline: 15 months after his first Major episode at age 6). He seems to be textbook as far as what Dr K said to expect. He is doing really really well but 12 weeks of some wax/waning is still expected. We are keeping our fingers crossed.....Best of Luck!!!!
  9. Hi. Our ds7 is post 8 weeks from his first IVIG treatment. The only side affect he had was a bad headache 24 hours later, and our doctor had a steroid ready for him. One dose. Presto, headache gone. Our ds was given benedril at the center by his doctor, so they may already have that in mind. We were very fortunate, he handled the whole thing beautifully. The first 6 weeks we saw very little panda's symptoms. (however I expected that cause he had just cleared a recent 10 wk episode right before ivig). Wk 7, he was highly symptomatic 5 out of 7 days....then presto again....woke up calm....have not seen any symptoms for 6 days now. Otherwise, the whole thing was pretty uneventful...except for our excitement over a possible end. One suggestion: Our doctor noted that some behavioral issues could result from old pandas patterns...So we decided to treat anything we saw as behavioral. I actually started a new behavior mod program that has turned out to be a total GEM. The Nurtured Heart Approach, by Howard Glasser. My ds has a twin whom is on the odd side of the fence, and I have applied his principals to both children, and I must say...Im on week four, and my house has never been calmer. While when my pandas child is symptomatic, the results are not as high, but it has turned out to help keep his environment very consistant, as well as a good barometer for knowing is it Pandas, or is it behavior.....The easy program works especially well for odd traits...... I wish only the best of luck to you!!!
  10. Hi Lauren, You may not be getting a lot of responses because your question is a little confusing....If you are at a good place, 85%, it makes sense that you would not see a lot of "turning of the pages"....No? Perhaps I am not understanding your question....would you mind clarifying a bit? Thanks,
  11. Hi Mom in DC. My first instincts is to tell you that if this is only her second Pandas episode, your child will probably require quickly. Maybe two to three weeks from onset of symptoms...you should also see improvement at the end of the second week of antibiotics. 70% reduction... My ds had strep and stomach flu back to back, but it was third episode, and the stomach flu lasted on and off for two weeks. I believe that it was because his immune system was already compromised from the strep as well as he was not fully recovered from strep induced episode so this complicated things...made it harder for him to recover. This set of dynamics could make it harder for your child to recover/take longer because of the bigger hit against his brain. My ds unfortunately took eight weeks to recover. I would recommend starting a probiotic. This will help his system recover faster, especially from the stomach flu. Florestar is great brand for kids. It also helps with the GI upset brought on by the antibiotics.
  12. It seems that my ds is always more symptomatic while on augmentin, Have any of you experienced this? and any theories as to why? My ds has responded to abx but always not until he was off it for a few days...Now, after having ivig and has started a 1 to 2 yr regime, I am concerned that there is a connection between abx/augmentin and a possiblility that they make it worse while on it and the improvement seems to come a couple of days after a course. Am I imagining this?
  13. Thank you so much for your very informative reply...very helpful!
  14. Hi everybody. Well, my ds7 is about 8 weeks post IVIG. I have journal his progress. Breaking it down: First 3 weeks: asymptomatic w/exception of bedwetting which ended in 3rd week. Since then: 3 severe days of symptoms: 2 back to back and then 1 day and then gone. Awakened completely calm following mornings. 4 days of moderate couple of hours to 1/2 day of symptoms then a calming down was apparent. The rest of the days have been comprised of 40% residual behavior issues (able to respond to behavior mgmt. program in place) & the rest of the days...Pretty darn good!!! One symptom that my ds has never showed on any grand scale was separation anxiety since he has a twin...However, this has cropped up over the last 3 days and is the current only symptom. I find this curious...why now? And...why do they consider this wax/waning a part of the healing? Any Ideas????
  15. My ds had 40 grams....Interesting that some of you feel there is a link on how symptomatic/severe the child is before receiving the first IVIG. My DS is probably on the mild side...although he has had four episodes, 2 big 2 small in the last t 1/2 years. I asked Dr. K about that theory, and he said that severity is not a predictor of results. As of today, 3 days post IVIG, my DS is looking back to normal. Gone are his hyper-repetitive movements, rage, temper-tantrums, inability to reason, etc, etc.....Apparent is his ability to focus, to reason, to remain calm, no bed wet's. It is almost odd. I do know that about five days before treatment, I felt he was coming out of his latest episode...waxing/waning.....As of IVIG..Waxing/waning GONE. He looks like someone who just went through reform school. My ds's baseline when not symptomatic is so polar opposite then when he is. It is still so hard to wrap your brain around this..even when it is right there in front of your eyes....This just can't resurface again. It just can't. Thanks for all the well wishes!
  16. Yeah!!!! We just finished day two of IVIG for my peanut with Dr. K. My DS did wonderful...I was so proud of him. I picked Dr. K about some of my concerns...mainly, I have heard that IVIG is not a cure, he said, "not true". I replied, "so I can assume that after this that there is a good chance that my ds will never deal with this again?", he said, "yes, that is true". I must say, while his answers were single worded, they were said sincerely, and with conviction. It really lended me confidence for my Ds. I also asked him about the whole good at math connection with these kids...he unfortunately had now answers for this, he said, "this is one of those areas that we are aware of, but have no idea what it means or if the association matters". I asked him about heart damage, again, he was very succinct..."there is no proof that pandas causes heart damage"....I asked him if severity levels show different outcomes with success in ivig...he said, " I do not see any associations with regard to severity/degree of symptoms that point to a lesser success rate with ivig...So, it was all positive. Dr. K was very confident, in regards to the long term benefits we could experience and even a cure. I asked his nurse assistant, who, appeared very well versed on Pandas and seemed to be involved with a lot of Dr. K work, "how many times do you have to give a child a second treatment?" she said, "rarely"....that being said, while I took that as a positive, am aware them some people don't come back because they saw no measurable improvement in their children....nonetheless, I wiil see this as positive....This just has to work...it just has too....
  17. remember that after initial episode, any illness can trip off an episode. Was he sick at all? If your seven year old is okay to date, testing him would be moot. Does he suffer from allergies? This season was so bad, that I even felt sick from allergies...I would not be surprised that allergies set off an immune response that could set off pandas episode....just my thoughts...what is your usual course of treatment with your son? I would do that instead...hope this was helpful in some way.
  18. Wow, I don't know what this all means, as with everything else in regards to Panda's, but it sure is interesting. I remember reading that the rate of Autism is higher in children that come from computer/engineer parents compared to the rest of the population. So I suppose I am not all that surprised. I am going to ask Dr. K about this and tell him about this forum response and see what he has to say....My ds is having his IVIG next Thursday/Friday so I will see him. Wish us luck!!! I will report back on his thoughts....Meanwhile, I hope more people respond to this post. I will consider this our first clinical research trial.....Ha
  19. I was going to respond to this post. But as usual, with this forum, you are dealing with highly informed people who know what they are talking about. So, DITTO, to what they all said.
  20. I too have noticed this with my ds. When he was ill with other things like the stomach flu, he would calm down and I would see a different child. My take on what is happening is a little different, and perhaps only specific to my child. If my ds has two things happening at the same time, say a pandas episode and then another infection, it appears that it is just too much for him and he conks out. He is just too tired to exhibit typical symptoms like rage, hyper-activity, meltdowns....but as soon as he gets over the 2nd infection, he returns to the panda's symptoms until the episode passes. I relates this to the fact that while the first infection might be gone, the brain is still inflamed, hence the return to the pandas symptoms...if he stays healthy, the brain eventually becomes un-inflamed, and over weeks, I will see the wax/waning stuff until he is eventually he is back to normal....until the next immune response.....
  21. I can't believe how many come from families with engineers. So it begs the question. If you read this post. Just give a ye or nay if you have engineers in your family. I know...much more serious stuff to talk about...just humor me.
  22. I will have ask Dr, K and get his thoughts. I will let you all know what he says...odds are the answer will be "I'm not sure..." as with everything else they don't know yet about this disorder....
  23. Geez....maybe it's the engineer gene that does it..........ha
  24. I remember thinking when I read in the profile of Pandas kids that they tend to be good at math, I thought...that is strange. My ds was only 6, now 7 when he was diagnosed. So math was not yet a big part of his world. However, he has just finished 1st grade and he is oddly enough, excelling in math, to the point of being high average. Doing 3rd grade level, and with no help from me. Trust me, with a Panda kid and a twin who has sensory issues....there was no extra time to devote to math. I was lucky if I got the daily reading in....Anyway, any of you hear a theory on why these kids would be good at math? I would love to hear feedback on this. Curious..............
  25. My brother, who was a closet "naysayer", babysat my son two nights ago. My son was diagnosed two years ago, but because I kept him away from family, friends during "episodes", they were all a bit skeptical...I don't blame them. I have lived it, and it took me awhile to believe it. You can say that my brother was converted two nights ago. He saw first hand what Pandas can look like...The aggression, the repetitive movements, the rage. He tried it all...firm warnings, which lead to consequences, which of course did nothing....He took him on. He eventually tried a human body embrace to stop the chaos...of course, it made it worse. He apologized. He thought he could contain this, handle this....he found a different reality that was closer to my own. I could see by the look in his eyes, that there was a new level of understanding. I sent him this article. I plan to send it to others. I will pray for Pandas, and for all who need to have that eye opening moment where they believe...for those who can make a difference....a difference in our children's future.
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