keeptrying got a reaction from mom24pandas in 1 1/2 wks post ivig - need advice please
It is 1 1/2 weeks post ivig for us. The first few days after the ivig, my dd's tics were very low, BUT they have been slowly increasing ever since. Things are different in that, tics that were lower are now higher and those that were higher are now lower. The vocal tics are still there too. I know that Dr. K talks about certain weeks/months when the healing crisis is to be expected. Can anyone help me to understand when those are? I am trying to listen to all the great advice that is being given to me but it would help a ton to understand this process better - IF that is even possible.
My dd has had tics for almost 6 yrs now, Dr. K (through phone consults agreed it was pandas and strongly suggested ivig), the medical professionals we are with have agreed as well, so we went for it. I am praying we made the right decision. I am scared to death. I would be appreciative of any help. Thanks!
keeptrying reacted to keeptrying in Acupuncture
So my dd had her first acupuncture appointment this Saturday and her tics have been increased ever since. What does this mean? Is it too soon to expect any change? I know everyone will react differently and possibly not at all - but I didn't expect this. Any advise??
keeptrying reacted to PacificMama in Amazing Result! Unplugged Cordless / Wireless Lyme & tics
I only post here occasionally (I should do more!), but I continue to find this forum, and all of your advice, to be invaluable.
I just wanted to post about a change we have made that has affected my daughter’s behavior quite dramatically (her background below). And I am curious to hear others experience’s / comments. (I will post on both Tourette’s and Pandas forums).
About 10 days ago I disconnected/unplugged our home cordless telephone system. I did this because sadly another friend of mine has developed terminal brain cancer and I decided to go back and use the “old fashioned” corded phones only (and severely limit cell use). We also only very occasionally turn on a wireless router. Anyway, after several days I realized that my daughter was no longer having her daily (or multi-times daily) rage and anger outbursts. I mean NONE. This has never happened, and it completely coincides with our unplugging the cordless phone (which she used to sit near in the kitchen area). She has been the most complacent and sweet natured kid EVERY DAY. I can not tell you how amazing this is. For myself and my husband, we can say we notice that we feel “better/calmer” in some slight way, but for my daughter the change has been dramatic.
I see that there have been a couple of other posts here about EMF (electromagnetic field) sensitivity, and I have been researching extensively since noticing a correlation. Apparently EMF creates an opening in the blood brain barrier. They disrupt neurocognitive functioning, disrupt neurotransmitters (serotonin etc.). People who are chemically sensitive are likewise more sensitive to EMFs.
Please let me know what your experiences may be.
Also, please consider unplugging your cordless phones, home wireless systems and turning off cell phones in the house for a few days and see what reactions your or your children have.
Thanks for reading!
[background---- my daughter is nearly 8yo. She’s had a long battle with lyme disease that’s left her with a propensity for tics and OCD. She goes through periods tic-free, but at other times they return to varying degrees. We’ve been on long term antibiotics, but are off now. She’s quite chemically sensitive, and we have great luck when we really watch her diet and limit as much toxic exposure as possible.]
keeptrying reacted to jimTheBassPlayer in intuniv - helped or not?
Our DS12 Started Intuniv around the start of the school year ... and it did help his tics ... he was having basically constant vocal and motor tics (head rolling, and a sort of grunting/snorting noise) we were concerned as he was starting a new school (middle school) and was ticcing badly. The intuniv did help. The head rolling stopped, the vocals were reduced ... he still had some vocal, and his motor switched to a less noticable tic ... we call in "banging" where he would basically punch himself in the hip ...
After Dentist he had a flare up of his old breathing tic ... constant deep breathing with a sighing noise, one of my least favorite of his tics ... that thankfully only lasted a few days ...
Recently his neck roll has come back, but milder and not as frequent ... his seasonal allergies are really acting up so hoping thats the reason and that theyll subside again ... wasn't aware of the diminishing effect with Intuniv, but I'll read up a bit more on it now.
DS has put on a little weight, he has a little gut now, he has always been as skinny a rail though ... not sure if its related, but its possible.
Didn't have too much trouble with sleepiness, probably was groggiest when he first started, but he was getting up at 630 for middle school for first time so it could have been that.
All in all I've been happy with it, as its made his middle school transition more manageable and the side effects have been minimal ... hopefully it continues to help, we're not really fond of meds at all, so we'd be reluctant to try others ...
Just started trying acupuncture ... he's done it once, more of a "warm up" session as he was very nervous about it ... and his allergies have been horrible, hopefully we get more of an indication of how much that will help after the next session or two.
keeptrying reacted to 911RN in intuniv - helped or not?
My DS was on it about a year several years ago. Seemed to work the first 6-8 months then effects wore off. Gained weight and just made him too tired. Falling asleep in class daily at 2pm for 1/2 hour to a hour. Had needless sleep study thinking he had narcolepsy! He did not...stopped Intuniv and daytime falling asleep went away. Intuniv is only approved by FDA for use for 12 weeks (I think)...check the manufacturer website. It has not been studied in children beyond that time which is just foolish. If indicated mainly for ADHD (which it is)...what child is only going to need ADHD "help" for 12 weeks????!!!! It did seem to help with tics and attention but the other side effects (for us) were not worth the gains. Have followed lots of posts and blogs with parents whose children were on Intuniv (long acting form Tenex) and results were all similar. Most abandoned it over time. Seems like folks have stayed with Tenex (short acting form) longer than Intuniv from my reading experiences. We have never tried Tenex.
Our Neuro is recommending Marinol for my DS tics (he s nearly 13). I have not agreed yet...thinking about trial this summer when school is out. I am a bit concerned with appetitie stimulating effects--further weight gain and sleepiness. My DS is chunky and does not need to gain anymore weight. Not obese (yet) but could head in that direction with any nudge. Neuro claims it has been a life changer for some of his chronic tic children. States they do not get "high" but the tics go away. My DS does not take anything for tics either...his are mainly vocal. Few motor tics. His tics don't seem to bother him as much as it they do others so I try to keep that in perspective. I am treating the child or others?? However, it does have an impact on his social abilities. He takes low dose SSRI (Zoloft) for minor anxiety/depression/OCD which has made a positive impact. Lamictal for underlying abnormal EEG which we are slowly weaning. That's it...a few vitamins.
Our children are similar in ages. Maybe Marinol is option for your DD also??
Good luck with whatever you decide...sorry, not to be more positive. That was our experience with Intuniv.