bronxmom2
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Posts posted by bronxmom2
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Hi norcalmom,
my son always had a STRONG reaction to dental cleanings. I know I may pay a higher price for this later, but I try to be strict about brushing and avoid the dentist.
Hope he gets better soon.
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There's a station walking distance from Dr. B's-- Noroton Heights. Easily, pleasant trip from Grand Central.
This is by far easier than driving, since I95 northbound is the vortex of suffering.
Absolutely no need to rent a car.
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The most revolting article I've ever seen...
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He had his last IVIG in Feb 2011, by the end of the summer he felt solid. So.... 7 months?
Which is just exactly what they tell you, but you don't quite believe because you can't quite see it as it's happening.
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I believe you will. Because you've already proved that you won't rest until you do. You have become hyperalert to every sign of trouble, but one day you will start to breathe a little easier.
It's like raising a toddler... watching them every second... then one day you realize that you're taking a long, hot shower and your 3yo is playing somewhere and you're not even worried about it.
Anyway I believe you'll get there because you won't stop until you do. As Dr. Latimer said to me (with a sly wink): "The PANDAS crowd is very persistent."
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Hi all, just wanted to give an update on my 9yo son. I hope it will give some hope to you if you feel like you're not getting anywhere. 3 years ago, my son seemed to slip away from me in a haze of delirium, only to come back when he had antibiotics, only to slip away again after they stopped, only for me to realize he needed them permanently, and then to realize that even with full-strength antibiotics he was not the same as before, he could not be around other kids without going bananas, he'd probably had strep colonized in his body for years, horror of horrors, he stopped being able to count, etc.
After PEX, after 5 or 6 IVIGs and much gnashing of teeth over whether it was doing any good at all (and finally adding a small dose of Strattera)...I would say that today my son is 100% totally fine, in fact better than fine. He is amazing and I am extremely proud of him and enjoy his company immensely.
He was out of school for years, and went back this year. We were lucky to get an incredible teacher who appreciates my son and best of all creates ways for the kids to write via the computer (a class blog) that do not feel like "accomodations"-- my son would have rejected being singled out, but all the kids are writing on computer so he goes with it. This is a kid who until this year did not write. ANYTHING. Would completely freak out and panic at the site of a blank page. Hysterics. Yesterday I casually asked the teacher how he was doing, especially with the writing, and after a moment's pause he said, "I'd say he writes like an intelligent adult."
This is incredible. He will always be quirky, messy and highly disorganized, he has definitely come out of this with his faculties intact and with a real will to be his own person. I might even go as far as to say he is stronger than he might have been before, because he is compassionate. And now I know to be careful with him.
Anyway sorry if this seems braggy, but you guys will permit me.
I recommend a teacher who can let kids write on the computer without making the kid feel "weird." (My kid is weird enough.) Also, I was reading the conversation about the BBB and I think it's definitely important to try to cut the stress your kid experiences, any way you can.
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One of the best PANDAS article's I've ever read.
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I just want to concur that the behavior charts are not going to work and will probably just undermine your son's fragile self-esteem. My son exhibited lots of behaviors that seemed (like your son's) to fall between impulsive and compulsive. He is also 9.
Advil or Aleve in the morning to address the inflammation are a good idea. I also give my son fish oil every morning, though I'm not sure it does anything.
For us, adjusting his brain chemistry with a low dose of Strattera has been a magic bullet. BUT... we were pretty far along in the healing process (3 years of abx, PEX, multiple IVIGs) before I did this, so I did not do it when he was exhibiting his most maddening and inappropriate behaviors. He was better, but still struggling a little bit and I was confident that his remaining issues were not going to resolve without some additional help.
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Sent chills down my spine.
I was treated this way, 25 years ago, when I became suicidal in what was almost certainly a PANDAS exacerbation.
I was locked in a room and left to cry alone.
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I am not sure but I don't think Lauren's daughter had OCD...
or anyway this is not the first thing they would have identified.
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Hi Michael,
It actually sounds, between the lines, like your son is doing great!
I think you should honor his wishes and rescue him from that situation. There is a great homeschooling community in NYC called New York City Home Educators Alliance(NYCHEA)-- you can google them-- for a nominal annual fee you can get all their listings of amazing things to do to nurture your son, if you have the time to do it. This was a good alternative for us for several years.
My son is back in school now, and doing great. I don't think your son should be in a special ed classroom. You must have an IEP for him, so maybe you can get the DOE to provide some tutoring services at home.
Good luck.
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Wow, this is huge. Thanks for posting.
The language in the media is changing dramatically, ie "I used to think it was exceeding rare, now I think it is exceedingly common."
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Time.
And, maybe, low-dose strattera
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I posted this because my son has not written ANYTHING for several years... now that he has started writing, this is what comes out. Astounding.
If you could have seen how limited his writing was before... well, I'm sure most of you know about that.
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This is a brag, I have to tell someone about this. My 9yo PANDAS's teacher set up a blog to draw out reluctant writers, and this is what my son posted under the "What Thanksgiving means to me" theme:
Our ravaging of Indians for land was inexcusable and for all Indians that died in the plains wars, I say rest in peace forever,
and I, and all others that hold all-and I say all-lives dearest to
us, from the tinniest ants, to the biggest elephant, every creature,
hailing from land or sea, air and space, salute to those that do not have those lives, and be thankful that we have them, in the wake of others that do not.
The true meaning of thanksgiving is the great feast that took place in the “new land” new as it was to europeans, was not
to the people who are native to this land.
What a beautiful child. I am an atheist but god bless. I believe our kids will all get better.
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Does anyone know if an infection (besides meningitis) can cause chronic neck pain?
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I think your best bet is looking for an underlying immune system issue...
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I think maybe you will be putting too much stress on yourself if you try to home school. I home schooled my son for 2 years and it was a very mixed experienced and very stressful to me. My son and I fought quite a bit.
One big advantage is that they are protected from exposure to the illnesses of other kids-- so you can eliminate one of the variable and see if she improves just from that. They can sleep in and get plenty of rest and exercise and time outside. I liked being able to go to museums and stuff on quiet days (we live in NYC where stuff is overwhelmingly crowded on weekends). So you do get a chance to reconnect to your kid but, like I said, my son and I ended up fighting a lot, because in the end I was too frustrated when he did not live up to my expectation.
When I did send him back to school (this year) it was obvious after two days (from the look on the poor teacher's face) that he was going to need some extra help, so I got him a prescription for Strattera. This has been a miracle for us. I would not say my son has ODD but he was definitely defiant, excitable, impulsive... the Strattera addressed these things. This is just our experience.
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I live in NYC as well (which is great! why do you think it's awful?)... you should see Dr. B. They are very good at getting approval for IVIG for immune system problems.
My Igg4 was also very low, failed the pneummoccocal etc. See Dr. B in Connecticut. You can take the MetroNorth, it's walking distance from the train.
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yes, a brief worsening of symptoms (especially after the first IVIG) is very common... happened to us but it evened out after about 2 weeks.
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25mg per day. He is about 90 lbs.
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Hi Linda, I tend to agree that you should manipulate one variable at a time. You will not know what benefit the IVIG has given if you try attention meds at the same time. I saw both Dr. L and Dr. B but at the time I was not ready to go the meds route so I never even asked them about it... I did everything I could medically (PEX and 6 high-dose IVIGs), then waited another 6 months after that before finally accepting that the maddening behavioral/cognitive difficulties were not going to go away through these medical treatments.
My son was homeschooled during the entire time (2 years) that I pursued these treatments, but this year he wanted to return to school and I could tell after 2 days from the look on the teacher's face (what is this???) that he was going to need help to succeed in the classroom, which he desperately needed because his self esteem was in the toilet. He just wanted to be with his peers and not be "weird."
I also would not do the stimulant meds (though he has self-medicating with coffee sometimes too) and found a neurologist who would go straight to strattera (my ped was going to make me go through all the stimulants first) and I can tell you that from the very first dose it was nothing short of a... miracle. It has been a month now.
Peace and love have been restored to my house. My son feels good about himself. It is so great not to shout at him all the time!!! Not to have to repeat everything 500 times. Not to see him alienate his friends with his emotional volatility. Not to walk toward the school at pick-up time with a nervous knot in my stomach.
However, I don't really regret not doing it sooner... I wanted to give the other stuff time to work... I only did it when I felt I had no other choice... homeschooling was good because I did not feel pressured to do it sooner.
I would say that he still has some cognitive issues... maybe a math-specific LD (still can't do computations)... but he is trying. And the writing is WAAAAY better. He got 100% on a spelling test last week which included words like "impetuous" and that is truly a miracle.
The drug has not made him obsess more, but rather less... he now has a much broader range of interests which is also such a relief.
All of our kids are different in so many ways but this has been my experience... so far.
Keep it in your back pocket maybe for a bit longer if you can. Some kids do seem to wind up not needing it. Not mine. Good luck.
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we are having success with a low dose of strattera.
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where exactly is glycine and where can we get it?
Dentist Issues
in PANS / PANDAS (Lyme included)
Posted
Hi all, I haven't been here in a while. My son, who is now 10, has been doing great.
But I recently took him to the dentists for the first time in a year and a half (because it always triggered problems) and, sure enough, he is obsessing and hopping around again. Nothing too bad... but it is quite evident.
Has anyone figured out how to protect a kid who is in "remission" when he goes in for dental cleanings? Avoiding the dentist entirely is not an option obviously...