mdmom
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Posts posted by mdmom
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I was thinking Babesia too (before I read everyone else's responses). Institute of Medicine takes the stand that in the absence of positive test results, you can use low WBC and elevated liver enzymes to diagnose.
If you are on the East coast, it's very likely that Babesia is present. Experts studying the disease surmise that 100% of the population on Martha's Vineyard has it. Yikes.
Treatment would be antimalarials (Mepron, Malarone) plus Azithroymycin and Bactirm.
Are you working with an LLMD?
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Cobbie et al...
Stay the course. God is good - I thank Him everyday that I found answers for my son. Otherwise, we would have lost him to his psychiatric issues.
Praying all goes well tomorrow.
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Thanks for the ideas. He does take digestive enzymes. The pain is sometimes not present in the morning so he will he breakfast. But it starts 1 hour after breakfast and gets progressively worse throughout the day. Even wakes him up at night.
JuliaFaith - I am suspecting a mold exposure in our rental home. Do you think if he was exposed to mold in December that he would still be holding onto biotoxins?
He was started on TPN on Saturday since he lost 2 more lbs. Not where I thought life would take us but he is wasting away and we had to head the weight loss off somehow.
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I will PM you the name of someone in DC.
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DS15 has had GI pain and GERD since December 2012. Ironically the symptoms started when we were in Florida for the OCD program at Rothman. So we were there to fix one problem and came home with another.
Since December the following tests have been done:
Metametrix Stool Analysis - only showed low Elastase (pancreatic enzyme) so he's taking digestive enzymes now
H. Pylori blood test negative
C Diff blood test negative
C Diff Stool negative
H Pylori stool negative
Colonoscopy/Endoscopy showed a hiatal hernia but nothing else remarkable (and biopsies were negative for H Pylori)
Abdominal CT scan negative
He's taking Dexilant (proton pump inhibitor) that is sort of helping with the GERD, but I learned this can eat up B12 so this is not a long-term solution.
I know you are all thinking OCD restrictive eating, but this is not the case. He simply has abdominal pain when he eats and does any form of physical activity like climbing stairs.
He has lost 10 lbs. since February. He is 6'2" and weighs 126 lbs.
He is IGM positive for Mycoplasma, has elevated strep titers and positive for WA-1 Babesia. He has a Hickman line for IV abx, but we stopped all abx and antifungals 3 weeks ago to see if they were causing the GI distress.
Without resorting to an NG tube, how do I get calories in him? We have been strictly gluten and dairy free for 4 years.
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It depends on what blood components you are testing for - CBC and CMP you can test anytime. But if you are looking for infections, you will have to wait.
We waited 4 weeks between IVIGs to do an infection panel. Doc said it would be accurate and not skewed by donor IG. She was correct b/c the only infections that were positive were ones that we knew he already had.
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Did you try the Rothman Institute at All Children's in St. Petersburg, FL. It was an excellent program for DS15 last winter - by far one of the best things we did for him and he did for himself.
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My son (who was 14 at the time) was on IV Rocephin twice daily for 5 months Mon-Fri (took breaks on weekends). Of course, I worried about his gallbladder the entire time and some docs give Actigall prophylactically, but our LLMD did not recommend it. For detox we used NAC, high-dose probiotics, Milk Thistle, and lots of water. He made a lot of progress (i.e. his psychiatric symptoms were greatly reduced) on Rocephin.
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Dr. Ed Breitschwerdt has done the most research on Bartonella - I believe he lost his father to the disease. His is a veterinarian but helped develop the human testing that is on his website.
There is lots of information on his website - perhaps you will find what you are looking for here: www.galaxydx.com
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It was not a hard decision for us - my children both went on IV meds after 1 year of failed treatment (for Bartonella, Babesia, Strep, Mycoplasma) with orals.
Both of my children went undiagnosed for many years, so I had prepared myself that their treatment would be slow and involved.
They have both been on IV meds for over 1 year now. They both have central IV llines and get daily infusions. PM me if you'd like specifics.
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It is my understanding that you should try to stick with one brand if it's been tolerated in the past. Gamunex-C is the only product specifically indicated for neurological conditions.
However, looking at the comparisons of Ig products in this chart, you will see there is not much difference in the basic components of Gamunex vs. Privigen (both have no sugar, both have have a 10% concentration, both have low IgA), so Privigen is probably a good choice if you do have to stray from what was dosed for previous IVIGs.
http://www.bdipharma.com/Comparison%20Chart%202012/IVIG.pdf
But why couldn't you push for Gamunex? It could be cost issue (maybe hospital gets a better return on Privigen) and they don't want to get the more costly brand. You could also ask for Gammaked which is identical to Gamunex-C, only it's marketed under another pharma company name. I believe Gammaked costs a little bit less than Gamunex-C.
My son has had 3 HD-IVIGs using Gammaked. He has tolerated it well.
Hope this helps.
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We will start 1 week of infusions next week 50g Vitamin C (ascorbic acid0 for 7 days straight. It has high antibacterial, antiviral properties without many side effects.
Would love to hear other's experiences.
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I suggest calling the airline's customer relations department and letting them know of your daughter's current state. They may let you board first with passengers with disabilities, which might ease some of your daughter's stress when boarding since being touched and bumped during boarding and deboarding is inevitable. Also , the airport puts everyone on edge even on a good day, and I would worry that the TSA might have issues with outbursts and rage if they aren't informed ahead of time that your daughter is in a fragile state right now and you are traveling to get her help.
When I flew Southwest with my son 2+ years ago and expected him to have outbursts in the airport and on the plane, I called ahead and explained the situation. They made a note on his file (and mine) that he needed extra care, so it helped everyone involved. They let us board early and it helped immensely.
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So Mycoplasma can cause GI issues? This is his chief complaint at the moment - GI pain and GERD so bad that we had to resort to seeing a specialist who put him on a proton pump inhibitor for the acid reflux issues. He's lost 6 lbs. since January b/c he's not eating well. He will have an endoscopy/colonoscopy next week, but I have a gut feeling nothing will show up.
Maybe the Mycoplasma is to blame....
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We have all been tested and he's the only one that comes up positive. I'm thinking it's an old infection that never cleared and now his body is finally trying to clear it.
It must be very hard to treat b/c he has been on so many different abx for long periods of time and this infection is still hanging around.
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I plan on being there with 2 other moms. Glad to meet up for lunch. PM me if you want and we can exchange numbers.
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DS15 who has PANS has been treated for multiple suspected infections by an LLMD - he's been on abx, antifungals and antivirals for 2.5 years now (orals for 1+ years and daily IVs for 15 months). He started monthly HD-IVIG January 2013 since getting diagnosed with CVID in January 2012 (of course, we hope it will also help with PANS)
His bloodwork in the last 2 years has only been positive for strep and IGG low-positive for Mycoplasma but he has been treated based on clinical symptoms and other positive results in other family members for Babesia, Bartonella, Lyme.
His bloodwork from 2 weeks ago (4 weeks post-IVIG) showed an high positive IGM for Mycoplasma (1874 and upper limit is 950).
What would explain the sudden IGM result? Do you think he is finally fighting off the infection since IVIG is giving his immune system a boost?
Mind you, he is completely asymptomatic for Mycoplasma other than fatigue and a little sniffle. He is currently not in a PANS exacerbation nor does he attend school or leave the house much since his immune system is so compromised right now (very low WBC and low IGG).
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LLM is our MTHFR guru on this forum and you might reach our to her since she just had the 23 and me test done.
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Also, Gammaked is an identical product to Gamunex.
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Mepron was well-tolerated by my entire family - my husband, myself, my 13 yr old daughter and my 15 yr old son. We all took it for 9 months. One tip - get the pre-measured packets prescribed. Each is a single dose of Mepron (1 tsp) and it is much easier to take - no mess and you can't see the actual medicine (it is a bit much on the senses because it looks like bright yellow school paint). The taste is actually pleasant.
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Hydrate, hydrate, hydrate. My son starts drinking a lot of water 1 week prior and I start dosing Ibuprofen 600mg every six hours the day before, the days during the treatment and for 2 days after. Also, keep up with hydration during treatment and for 1 week after.
Get a cup with a straw (ours is 24 oz) - kids seem to drink more water from a straw.
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Hydration 1-2 weeks before and after IVIG is helpful. Also, you can dose ibuprofen after IVIG - we usually dose it for about 3-4 days after the treatment as well as 3-4 days before treatment.
Not sure about the fever, as my son has not had that side effect.
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Adding a stupid question....
We sleep with our windows open at night. Only in the heat of the summer do we keep them closed because we use central air.
Can you run an air purifier with the window open or does it defeat the purpose of the filter?
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This Friday my daughter will have a fungal ball removed from her sphenoid sinus. I am cleaning her bedroom today so that she has fresh air to breathe moving forward. Our yellow lab sleeps in her room and the doctor said to get the dog out. So once I rid the room of dust and dog hair, replace the mattress (it's 19 years old), wash all fabric items, etc., I feel like I should run an air filter in her room to keep the air cleaner.
Any recommendations on air purifiers? Our doc recommended Air Oasis products.
In case you are wondering, I have considered mold. But to be honest, there isn't a darn thing I can do about it right now if I find mold b/c of financial constraints. So we will have to manage our environment in other ways.
Drawing Blood at Home?
in PANS / PANDAS (Lyme included)
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Blood can be drawn at home; however, some lab tests require the serum to be separated from the plasma, so in this case it would need to be centrifuged.
If you are having blood drawn to be sent to a specialty lab, I have asked for the local lab (Quest, LabCorp) to do the draw and spin the sample for me. Of course, I usually bribe the staff with goodies from the local bakery.