peglem

Of course they can track down my doc- but there's a history of them being at odds w/ him over treatment of my daughter. I really don't want to cause any trouble for him because he has gone way beyond ordinary care for my daughter. Shame on these other docs for trying to interfere w/ him treating children that they do not wish to treat.

So, for the last 4 days Allie has been very sleepy all day long despite getting a full night's sleep every night- and I'm thinking something's up, but just can't put my finger on it. So this morning when I got her up for school, she was just laying around whimpering and I'm thinking she has a headache- give her AM dose of naproxen, and she does not get better. This progresses to out and out screaming and writhing in pain with a migrain. So I give her a dose of imitrex nasal spray and wait 1/2 an hour while she continues to writhe and scream in pain, w/ a side of uncontrollable aggression. Second dose of imitrex, finally gets her calmed...for about 15 minutes. Then she starts whimpering in pain again. But, while she was screaming, I got a look at her throat and it looks swollen. So, waited until 8 when her doc opens and called them- her doctor is not in today and has nothing available for tomorrow- and they lied and said he won't be in Friday (I know somebody with an appointment on Friday afternoon), but whatever... I was offered appointments with other docs in the practice- but that never works so I declined. The nurse triage (who sets up appointments) told me with her symptoms, she should be seen somewhere today. So, I decided to take her to the emergency room at the local children's hospital. I explain about her autoimmune disorders, I explain about her migraines, I explain her lifetime history of chronic strep that is very difficult to eradicate, I give them a blow by blow synopsis of all the meds I tried to relieve her pain and that I saw her throat was swollen. So they run a rapid swab and it comes up positive. So the doctor says we'll treat the strep and follow up w/ ped. By this time, Allie is really beginning to show signs that the pain is ramping up, so I ask what I'm supposed to do about her pain- I only have one more dose of imitrex until the 10th. So, she says she can give some IV pain meds through her port, and do some bloodwork to see if she has infection elsewhere as well. So we consent to that (I've never seen anyone so incompetent w/ accessing her port) and they give IV morphine that really, really helps, then run a saline drip. Like an hour later- pain starts coming back. The doc is busy w/ other patients (understandable), but when she comes back, says she'll rx amox. I explain, once again that she has a history of chronic strep that is very difficult to treat and tell her that our experience w/ amox is that the only thing it does is cause really bad vaginal yeast. She states very emphatically that amox is the abx of choice for strep infections and walks out of the room. When my husband asked about pain medication- she very quickly agreed to rx that. But.... When I went to the pharmacy to fill the scripts, she hadn't supplied the proper code (or something) for the pain med (vicoden) and the pharmacy tried calling 3x but could not get ahold of her. So, we're stuck here with ineffective abx (I am though, giving her daily azith instead of her regular every other day) and no pain meds- and she's just laying on the couch holding her head and whimpering. I decided to go see a nurse practitioner at her peds office on Friday morning who has been pretty decent with us in the past and hope for the best. This really sucks!

This is the same article from the LA Times: http://www.latitudes.org/forums/index.php?showtopic=15701

Genes can mutate on their own- For example, Down's Syndrome is a gene mutation, seldom inherited from the parents.

IgM is the body's 1st response to a new infection- before IgG ramps up. IgG MAY mean an old infection, but in the face of symptoms, it most likely is a current infection. IgM does not stay elevated for very long and may not be elevated at all with later exposures to the same microbe. Augmentin is probably not the best abx for mycoP, since it usually infects intracellularly- there are abx that address intracellular microbes- zith is one. MycoP is a slow growing microbe- if it is not fully eradicated, it can take a few months to grow back to the strength needed for symptoms to appear. But also, if it is not fully eradicated the immune system will continue (or should continue) making IgG in response.

Yes, mycoplasma has been known to cause PANDAS like symptoms.

That isn't going to happen. Not only will Hub not get tested, but his mom won't either. They just will not believe that exposure alone can trigger this. And adult doctors here (we all have different ones, too) seem reluctant to swab for strep, especially w/o sore throat symptoms- they always want to check titers instead. I did get my hub to ask for a test once- the blood test was done, but hub never followed up w/ asking for results. There's only so much I can do.

We had an abrupt about face this morning. Hub had to take his mom somewhere early today, and when he got home he suggested we go out somewhere for breakfast! I did not want to go (I'm so sick of dealing w/ his obsessions), but was excited enough that he wanted to eat that I sucked it up and went with him. His attitude was upbeat and casual- and he ate a lot! We went to a buffet style restaurant, so he was able to just keep getting food as much as he wanted. And we stayed after drinking coffee and just having a normal conversation. The gloominess has lifted. His obsessive thoughts had been remembering and reliving every bad feeling and slight he's ever had in life, so it was especially trying. I'm feeling a huge relief! Had a really tough time getting Allie to school today- she kept saying she was scared when we asked. Took nearly 2 hours to get her out the door. I'm thinking she is in a flare- we'll see.

The last 2 weeks (maybe longer, but more intense the last 2 weeks) Hub has been having trouble w/ obsessive thoughts. They are interfering w/ sleep- averages @ 2 hours a night of sleep and cannot fall asleep unless I'm holding him (separation anxiety?). He had decided to stop eating meat, and he's a real carnivore, but today has decided to fast-water only, until he "feels better." He is type2 diabetic, so this is terribly concerning to me. Prior to the diet stuff he was exercising compulsively. His breath smells phlegmy and it seems like he's coming down w/ something. He thinks I'm crazy (really? He should hear himself rambling on and on about the same things over and over and over again) and will not get a strep test. I'm worried about him being around our daughter if he's sick- she sure doesn't need another flare up. I just don't know what to do. Heck, maybe he'll go into a coma from low blood sugar and I can get him hospitalized!

There does seem to be a genetic predisposition to autoimmune issues.

I think its VERY possible, perhaps probable that the selective mutism and PDD-NOS are also symptoms of the same underlying problem that causes the tics and OCD, rather than separate conditions.

I believe you will have a very difficult time getting anyone in Phoenix to consider PEX- harder to get than IVIG.

We've had times when melatonin seemed to make things worse. I'd either cut back on the dosage or lay off for awhile. When we go back after an off period, it works again. I wonder, though, if there is something this can tell you about your child- like when antihistamine sets them off, they probably have low histamine. So, this response to melatonin, what could it mean? Does he have trouble sleeping w/o it? Maybe thyroid? Interaction w/ another supp or med?

Mel, how are you guys doing?

We did pneumovax 2X-@ 2 months apart did not get titer rise the 1st time, but did the 2nd time. Two years later, titers were very low again, but did not revax. My daughter has low total IgG (below range low) and deficient in IgG 4. We saw no adverse effects from the pneumovax.

Sending you a huge helping of pity. Dealing with this crap stinks!

If I try to reduce the NSAIDS she ends up with headaches. Even w/ NSAIDS she still gets them sometimes. Like this morning, she was up @ 3 or so- but went back to sleep when I got up w/ her. But first she ripped her clothes off- like she was too hot (and its not hot right now, even in the desert). But, I have to give her synthroid by itself on an empty stomach and not give anything else for at least 1/2 hour. Then, I gave her the naproxen, and waited @ 45 minutes to see if that would help...she wasn't screaming in pain- but you could tell it hurt to open her eyes, even in dim light, and she kept covering her face up. The imitrex helped. She had dental work last week, so that's probably contributing, and rubbing her gums seemed to soothe her. I just don't know if she's sick or not- so hard to tell when typical immune reaction aren't present. She's getting an MRI of upper extremities tomorrow AM, and will have IVIG on Monday. She does seem to begin a flare up when she's due for IVIG.

So,as background, Allie has been on synthroid just short of 6 weeks. Her cerebral palsy looking hand/arm cramps went away @ a week after starting that. Then, just as the hand stuff was gone, we started using imitrex nasal spray as a rescue med for migraine w/ great success. But, I find that in order to stave off headaches (and avoid over-use of the imitrex) it is necessary to dose her 1st thing in the AM and at bedtime w/ prescription strength naproxen + a dose of ibuprofen mid-day. This much NSAID worries me...but she needs pain relief- I try daily to avoid the afternoon ibuprofen, but she ends up needing it. If I cut the bedtime dose, she wakes in the middle of the night w/ a headache. Anyway, Allie's usual OCD is fixation type, where she gets "stuck" on an object and cannot leave it, even though it causes her great distress. For the last 2 weeks or so, she's been getting stuck on objects, but in a very trance-like state. I can sometimes break the spell by snapping my fingers in front of her face. If I don't interfere, the trance can go on for quite awhile- 4o minutes before I finally stopped it the time I tried to see how long it would last. What I can't figure out is if this is just her old fixation ocd, minus the anxiety, or something entirely new. Her overall anxiety level is greatly reduced.

Oh, Melanie, I'm so sorry to hear this! I wondered about doing PEX while he had an active infection (UTI). I wonder if it made it harder for him to fight that infection and if that is what's causing the problem. Hope the IVIG helps. Saying some xtra fervent prayers for you guys!

Huh. I have to go back and look at labs. I don't think we've ever done the math as far as finding the ratio of WBC's to basophils. But, my daughter's IgE is very low...don't remember the exact #, but seems like it was only 1 or 2.

Thank you. Is this something that has happened before and you've come back from? Or is this a new problem?

I'm very sorry to hear this. If you are comfortable sharing about it, can you elaborate about the difficulty you are having? Is it motor related or a word retrieval/processing problem? I'm just hoping to gain some insight into what has happened to my daughter. But, I will understand if you do not want to share.

Yes, its a supplement manufactured by Quantam Health and I spelled it wrong. It should be Migrelief.

Wow, I was sure enough to post that w/out checking! Looking now, I see that nicotine is an agonist. Hmmm. I could have sworn the muscarinic/nicotinic receptors were named because those substances blocked the receptors. For us, bethanechol, after priming with cod liver oil (vitamin A), seems to trigger recovery of appetite, sleep cycles, brain clarity, and even enhances eye-hand coordination. But, giving it chronically, the effect diminishes over time. So, I tend to use it for a week or so during crisis, then let it go. The 1st time we ever used it was amazing! The riboflavin(B2) has really improved overall mood and reduced spiking pain episodes. To clarify for others, as recommended by the neurologist, we are using a product called Migrilief, which contains gigantic ammounts of riboflavin, some magnesium, and feverfew. We do give additional magnesium. W/in 48 hours of use we noticed a dramatic improvement. As luck would have it, the PBSkids website that my daughter loves and uses all the time, went down. Instead of her typical hysterical meltdown w/ rages and severe aggression, she just cried. Okay, it was an overreaction- heartbroken sobs, but still, I looked at my hub in amazement...she's JUST crying! And headaches have been much fewer- have only needed to do 1 imitrex rescue/week. But, she had dental work (pulpectomy in 1 tooth) a few days ago, and now we are seeing an increase in behaviors and headachey meltdowns. I don't know if that is because of the tooth infection or medications used to do dental work- nitrous oxide, halcion, fluoride treatment...

Nicotine blocks nicotinic acetylcholine receptors. We've had some success off and on with bethanechol, a muscarinic acetylcholinergic agonist, which stimulates the parasympathetic nervous system.