BamaMom reacted to bigmighty in Desperately looking for help.....
While you are figuring this out, try ibuprofen 3x daily for a couple of days and see if there is any difference. If yes, it may be brain inflammation. See if one of your current docs is open to a steroid taper in addition to extending antibiotics.
BamaMom reacted to T_Anna in Visit w/DR. K...10wk IVIG update
DS just completed day 1 of his IVIG today...hopefully third time is a charm or the PEX is working?! or it's just a flukd, but I'll take it.
He is singing along to DH's Smithereens albums. Not sure it means anything, but I could listen to the off key singing all night!
Great news Qannie!
Good luck tomorrow LaurenK.
BamaMom reacted to mama2alex in CDC Estimates 300,000 Americans DX Lyme each year
It seems that some of what I was originally responding to has been edited/deleted, so I'd like to amend my post to say this:
With regards to Lyme being fatal in some cases - absolutely. As mentioned above, Lyme has been implicated in heart disease, Alzheimer's, and MS, not to mention ALS and cancer. In addition, it's not uncommon for chronic Lyme patients to take their own lives after years of unsuccessfully battling this disease, either due to depression or no longer being able to go on living so disabled and in so much pain - or a combination of the two.
Regarding the CDC press release, it's so good to see the CDC starting to acknowledge what ILADS has been saying for years. Hopefully, this is a sign of policy, testing, and treatment guideline changes to come.
BamaMom reacted to LNN in CDC Estimates 300,000 Americans DX Lyme each year
In Cure Unknown, a very, very thoroughly researched book that does not stray into unconventional theories or unsubstantiated anecdotal evidence, Pamela Weintraub documents a case where lyme disease does kill. Under Our Skin also documents cases where untreated lyme led to death.
Yes, I do think every parent should be told that strep can trigger OCD. Even if it is rare, to the person with Pandas, that knowledge can be life changing. I do not advocate inciting paranoia but I do advocate for dissemination of information and education of caregivers.
(HopeNY - thanks for the math point. I edited my first response to remove bad math done too early in the morning without a calculator).
edit - a friend just posted this on another site - http://www.nbcnewyork.com/news/local/Poughkeepsie-Teenager-Dies-Tick-Virus-Investigation-Joseph-Elone-220270481.html
Deadly Tick Virus Eyed in Death of NY Teen Who Collapsed in Yard Joseph Elone's family says the Hudson Valley teen was sick for about two weeks before he suddenly collapsed and diedHe died not from lyme but from a tick infected with Powassan encephalitis. The virus is untreatable and can be transmitted by a tick bite in a matter of minutes.
6% of the ticks in the Hudson Valley are estimated to carry this virus.
BamaMom reacted to lmkmip67 in Parents do make a difference
I am not sure all that was said, but I thank you for posting that. My son has not been helped by IVIG and we are still trying to find what will work for him. It is helpful to me to read things like this because I am not sure Ian will ever be totally free of OCD, even as an adult. So to hear that some manage to push through and build a life is indeed very helpful. And nice to see he realizes all of the help his parents gave him made a difference.
BamaMom reacted to LNN in Parents do make a difference
Sorry you had such a negative response. I find a message that says "hey, parents, it's your support that matters most to me, even if you can't remove all of my challenges" to be a positive one. I didn't post because the author has Pandas. But lots of our kids have OCD, so I felt it was relevant. I don't post on the OCD forum and it's not very active. I felt that parents here may appreciate a message that thanked them for believing in their kids.
Ok - so the author had a tough childhood. His message is that from those struggles, he emerged with gifts and looks to a future with promise and optimism. There's a girl in my son's school who's spent her life in a wheelchair. When my son would moan about the unfairness of having Pandas, I'd remind him that there were many people who'd gladly trade places with him. Helen would love to be able to run and climb and swim and not rely on a bag to hold her urine. Yes, Pandas is awful. But it's not the worst thing someone could deal with. When we sat in the lobby of the pediatric oncology wing at Georgetown waiting for pex, it was a real eye opener as to where my child fell along the pity party spectrum. I knew then that my son would eventually conquer his disease. Some of the kids around us wouldn't be so lucky.
I disagree about how a couple of IVIGs will restore you to completely normal. But we obviously have different life experiences and outloooks, and you're opinions are as valid as mine. So I apologize if this post upset you. But I found the story of an OCD survivor who thanks his parents to be worth sharing.
BamaMom reacted to Chemar in Dr.an Extreme Disappointment!
that is such a gracious response from you....thank you.
I am personally appalled that health care workers would ridicule a child under any circumstances.
And as someone who had to help a child work through some very severe OCD times, despite the positive impact of CBT, I deeply sympathize with anyone who knows just how debilitating it can be, and how often one needs to pick the battles wisely...with socks ranking really low on that battle list imho.
Kudos to you again for taking the high road here.
And on that positive note, I am thinking perhaps we should just close your thread as you have indicated you have made your last comment here.
Feel free to message me if you would like it re-opened.
BamaMom reacted to T_Anna in Dr.an Extreme Disappointment!
My last comment on our visit with Dr.N...I hope ; )
Yes, DS's attire reflects his severe OCD. Unfortunately, we are beyond CBT at this point.
I don't feel the comments about "dressing your child" are harsh, just misinformed.
I just read Howard Hughes: The Untold Story by Peter Harry Brown and DS is in "good" company.
This thread and hurt feelings will also pass. Let's remember that there are already thousands of people who judge our disease/disorder and tell us it doesn't exist, let's not act like them.
S&S, thanks, yes it is really, really hard.
T.Anna - turning the other cheek and moving on in positive directions.
BamaMom reacted to Hopeny in Please help..want to put DD is Psych ER
I'm so sorry my previously well adjusted happy daughter had suicidal thoughts/ideations at age 8 from lyme/strep. its very worrisome. We had a fairly quick response with doxyciycline in abating the thoughts. Amoxicillin actually seemed to accelerate them. Could you share where you are located? Its important to say that your daughter needs to be watched 24/7, do you have support at home to help?
BamaMom reacted to momaine in Doctors we have seen who helped with PANDAS
Though she knows little about PANDAS, our family Doctor in Richmond, Maine, Dr. Catherine Lockwood was willing to listen to me and try the saving Sammy dose of Augmentin XR. Though we've added Dr. Trifiletti to the mix in order to have an expert on board, I will continue to update Dr. Lockwood as to dd's treatment and recovery and she may be able to help someone else in the future.
BamaMom reacted to WorriedDADNMOM in Vaccinations for 12 year old, how to deal w/Dr.
1) Do get a new doc.....you should not have to ask them to be professional and explain their position. I recommend a DAN pedi or Integrative pedi.
2) Quit paying his bills. Tell him "the bills are not open for debate" if you don't have a say or at the very least an explanation as to why his route is better...why yours is not.
3) As I understand it, it is the live vaccines that tend to be the ones that send our kiddos spiraling. My kiddos are 10/9/7 and the WILL NOT be getting any more. At least not until they are healthy with strong enough immune systems to withstand them. Which may be never. I don't know.
4) DO NOT STOP ADVOCATING FOR YOUR OWN KID. DO NOT LET DOCTORS USURP YOUR RIGHTS AND RESPONSIBILITIES AS IT PERTAINS TO YOUR KIDS HEALTH.
I, like many parents, have been willing to sacrifice anything and everything, my reputation, my credit rating.....everything for the health of my kiddos and the functioning of my family.
Keep your head up and keep fighting!!!
BamaMom reacted to Chemar in The Tale of The Two Pots
The Two Pots (author unknown)
Once upon a time, a Water Bearer in China had two large pots, each hung on the ends of a pole, which he carried across his neck.
One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walk from the stream to the house, the cracked pot arrived only half full.
For a full two years, this went on daily, with the bearer delivering only one and a half pots of water to his house. Of course, the perfect pot was proud of its accomplishments, for which it was made. But the poor cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do.
After 2 years of what it perceived to be bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, because this crack in my side causes my water to leak out all the way back to your house."
The bearer said to the pot, "Did you notice that there are flowers on your side of the path, but not on the other pot's side? That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.
For two years I have been able to pick these beautiful flowers to decorate the table.
Without you being just the way you are, we would not have such beauty."