THINGS ARE HORRIBLE

[MamaOnAMission]

She was ok for awhile then got sick and OCD and confusion are out of control. We have had tons of tests and labs and this is what we have.

 

She has low IgE and IgG4

Abnormal EEG, but not seizures. Focal epileptiform discharges on right frontal central temporal area.

High B6

Cam Kinase 166

Restless leg syndrome.

Possitive for Bartonella/Lyme

High cholesterol because of vitamin D3 deficiency (their related)

High triglicerides

Clostridia Bolteae

Low Vitamin D levels (11)

No titers for PANDAS

C6772T MTHR mutation identified

Result: C677T Single mutation (C677T) identified.

Triglycerides high

Homocysteine high

Serine Pl low

Says there is a problem with M. Pneumoniae antibody

Total cortisol/DHEA-S ratio Abnormal

Cholesterol high

LDL cholesterol high

TIBC (Iron) High

Plasma renin quite high

ALCAT showed severe reaction to: phenols, acetaminophen, indocin

Bifidobacterium low

Blood work showed very high B6 levels

Lump under right ear at birth

Sinus infection on MRI at 5 years old.

Reaction to histimine control with allergy testing

High urine glutamine and urine histamine high

Conjunctivitis

Nasal mucosa and swelling and paleness, post nasal drip.

Excessive ear wax

Alka phosphate high

Constant stuffy nose

 

Susceptibility to tetracycline is predictive for susceptibility to minocycline, however in vitro resistance to tetracycline may or may not accurately predict resistance to minocycline.

 

PLEASE GIVE YOUR OPINION. DOCTORS ARE MISSING SOMETHNG. THEY NEVER MENTION SINUS INFECTION. IS THIS THE MISSING PIECE???

[Familyof5]

May not be your problem, but consider if you may have a problem with mold...chronic sinus infections, viruses, and bacterial infections are indicators. Are there any other members of the family that are ill? If so, look for environment as the cause.

[MamaOnAMission]

Stuffy nose always seems to get bad when on an antibiotic. She said it is like cement up her nose.

[mar]

Lilly

It's been a while! I am so sorry your daughter is not doing well. I just wanted to point out with the sinus infections. This is where it all started with ds. He was constantly pale, nasal swelling, post nasal drip, sneezing Like thirty times each morning. Was on antibiotic three times I believe in a couple of months and nothing was helping. Had no energy and was told he is pre ashma. Which I was told he will probably have ashma. . Funny but how in the heak could you do a breathing test on a kid who can't breath out of his nose bc he is so congested! He struggled for months with this non stop congestion. This causes other issues obviously bc he felt like crap. You have ran so many tests good for you! I am not sure if you did food allergies or sensitivities with her. This is what helped him. It's interesting how you said she gets bad on antibiotic with the stuffiness. My ds always took Motrin his whole life (high fever child) and then all of a sudden he would get completely stuffy and have massive post nasal drip and sneezing. Has not taken it since that last episode. This now goes to the molds. He has a mold allergy and through some research a lot of antibiotics have mold which would freak me out when he had to be on one. His doctor has no clue and I chose to keep it to myself. like the last mom mentioned I would look into mold. Last year we found mold in our attic. We built our house and who would think! It was pre construction mold and supposedly not active since it was not growing. We got it fixed!! Ds has not had a sinus infection in 3 years since put on diet for food allergies and sensitivities. Also I don't know if this is helping but since the mold in attic I have been keeping the humidity in the house low and have been keeping the heat at 66. This might sound cold to some but I have read that low humidity and Lower temps keep mold and viruses at bay. what I noticed in prior years when j would keep it at 71 with the humidifier on some one would be congested! I would get nose bleeds in the shower bc my nose was so dry. None this year. Both kids have made it so far with no congestion or sinus infections this winter (knock on wood) . DH husband complains that it's cd and so do kids at times and believe me I am not cold tolerant but I say put on a sweatshirt and be happy that you are not sick! Basically she should not be congested like that. Look into what she is taking, this could be causing it. From what I experienced with ds I was told to put him on singular for the next three months and that made me mad. he has all outdoor allergies and has not taken any meds bc his diet is controlled which is not fun but heck if it helps so be it. Email me if u have any questions. It's been awhile but I needed tk take a step back.

Mar

[LNN]

I guess I'd also want to know if the infection were still there. Isn't your daughter much older than 5 now? Still, a trip to an ENT might be worthwhile. Sounds like she may be having a lot of issues sinus-wise that could benefit from surgery or aggressive treatment.

 

Her high homocysteine is likely related to the untreated MTHFR mutation. The high B6 and high serine are also probably related. If she has methylation blocks (probably more than one), then things are getting dammed up and not being synthesized properly, which is contributing to the mood issues and OCD.

 

I'm sure you're really tired of tests and additional doctors. But it might be worth a phone call with one of the methylation experts. You can find a list here http://www.mthfrsupport.com/find-a-practitioner.html or post a question on the Facebook MTHFR Support page. I'm sure methylation isn't your only problem but the lyme and Pandas treatments might not be having the impact you'd expect if the body's systems are clogged. When we found methylation issues in my kids (pyroluria in my son - a zinc/B6 deficiency; MTHFR for my daughter) and started treating those things, the other stuff melted away much much faster. Someone who has medical training plus experience with methylation might be able to put his all together for you and help with a breakthrough.

[MamaOnAMission]

Thanks. I'll look into everything! I spent thousands checking mold in house. Spent thousands traveling to different homes and hotels to run from mold. She's almost 14. This kid has suffered so much! I just called all of her doctors for SOME help. I also pleaded to Dr. Phil for help! They want us on the show! Perhaps he'll get us some help!

[SSS]

Since your looking for any advice, okay I'll throw in what came to my mind.

The MRI was done when she was 5, now she is 13, and she has been on tons of antibiotics in that time- the sinus infection from that time very well may have cleared.

You say her sinus issues come out only when on antibiotics - my vote is yeast, since you have a terrible time getting probiotics in her- while on heavy antibiotics.

You are saying her IgG subclasses are low-

makes me think IVIG is needed- if they are still low, it should be covered by insurance.

I believe this is a treatment you've never done before,

might be exactly what she needs, given her bodies extremely difficult time of getting rid of infections.

You are in New Jersey- I think you've seen Scott Smith/Neubrander- I know they have their own infusion site there- did they not recommend IVIG,

especially given her subclasses are low?

 

And lastly, this will not be popular, but given her tremendous suffering, perhaps issues beyond PANS (like I've come to find my daughter has- we have been dx'd with autism recently)

maybe you could find a MD psychologists who is educated on meds that may further help her in the meanwhile.

[MamaOnAMission]

Thanks. Scott mentioned IVIG AND SAID WE WELL NOT BE COVERED. I'll call him back. Thanks good advice

[MamaOnAMission]

S&S

The longest she's been on antibiotics has been 4 months and its bactrim and doryx. Do you know if either those help with sinus? Before that she was on other antibiotics but not more than a month here and ther since she got worse and it never stopped. Another good point you made was the yeast. This is what I saw happen: when I got to full dose of bactrim and doryx her nose stuffed with cement as she calls it. I gave her 1/2 Culturelle and stuffy nose went away for three days and came back. So I upped Culturelle and she got agessive and stuck on one thought for weeks. Lowered Culturelle and not stuck on one thought. I am thinking I should try a pinch of different probiotics together but keep it small. In the meantime I got appointment with ENT and a docttor that's gonna look into mutation thing. Thanks so much everyone for the help

[mama2alex]

Thanks. I'll look into everything! I spent thousands checking mold in house. Spent thousands traveling to different homes and hotels to run from mold. She's almost 14. This kid has suffered so much! I just called all of her doctors for SOME help. I also pleaded to Dr. Phil for help! They want us on the show! Perhaps he'll get us some help!

 

Why did you leave your house to "run from mold?" Did you find some in your house? Have you done mold-specific blood tests such as HLA-DR, MSH, VEGF, C4A, etc to try to determine whether she has mold toxicity? Even if you've left a moldy building, you still have to pull out the mold toxins, if this is an issue. I agree with others - you should take a good look at this. Especially since you've mentioned that she has pretty severe memory issues - this is a classic symptom of mold toxicity. I doubt its her only problem, but if its part of the problem, you could get her toxic load way down fairly quickly and probably see some improvement from that. My doctor won't treat the Lyme until he's addressed mold toxicity.

 

Also, have you had her nose swabbed for Staph?

 

I'm really sorry things are so tough again. Please let me know if you need some guidance on the mold. I am in the middle of it right now, so I've learned some things and know how tricky and difficult it is.

[MamaOnAMission]

The first thing I looked into was the mold thing. Trashed everything in the house and had so many allergists and NAET people etc... check her out. I have to look through all of her records and look for those tests. I will PM you, if its ok? I am really thinking that S&S could be onto something with the antibiotics making yeast, but I just can't seem to get these proboitics into her without making her so agressive. I am going to try some other probiotics too. I am thinking perhaps New chapter or threelac might be worth trying again. I seem to have real problems with culturelle. Thanks so much

[MamaOnAMission]

JUST SAW THIS POST AND THOUGHT IS INTERESTING?

 

 

 

"My dd8 gets a sinus infection within 3 weeks of going off antibiotics. From what I have read, a lot of sinus infections are caused by fungus and not bacteria, so maybe the antibiotics caused the fungal overgrowth. My daughter never flares with these sinus infections, but her breath becomes horrid!"

 

So perhaps my child needs antifungal while being on antibiotic, since her nose gets REALLY stuffed, and feels like cement inside nose when she is on antibiotic.?????

[mar]

I remember looking into it years ago with him and antibiotics and mold. From what I recall certain ones have mold in them. I would question the doctor and of course they would say no. I don't understand how some parents are able to have their child on ativiotics for long periods bc I can't with him . I always noticed behavior changes but did not realize it till he was seven and did some research and yes yeast plays a huge role I think. He was on antibiotics 23 times by the age of seven and I believe that is what messed him up with yeast and what not. I think they completely mess up the gut and if they have mold then double whammy for him. If she is having reactions to the antibiotic I would for sure look at yeast and mold.

Mar

[MamaOnAMission]

Mar, you may be onto something. Did you see where I posted above about antibiotics creating fungus. Well I had some test done by Scott Smith and he put her amphotecerin for mold or fungus. Whatever he put her on kind of made her wild and out of control, but perhaps its because she wasn't on anything for the lyme/bart. at the time. Perhaps the antibiotic is making her fungus problem worse. I kept thinking it was yeast and upping probiotics but perhaps I need something onboard for the fungus. What would I ever do without you guys. I need to call Dr. J. and see if he can put her on an antibiotic with out mold I guess. Do you know if there are any???

[EmilyK]

You mention a "problem with M. Pneumoniae antibody" so is that mycoplasma? That's a trigger for my son in addition to strep.