This is what is happening.

[trintiybella]

I realize my posts were all scattered and all over the place. At times, she is so sick that I am spinning in circles trying to get her relief. Anyway, this is what is happening....

 

She was on Bart. and Mino. for a year. Saw no real improvement. All supplements and medications seem to make her worse. She had SEVERE constipation too. We stopped the antibiotics for a break and doctor treated clostridia. She now poops and seems a bit more out of her autistic world. He also put her on amphotecerin for yeast, that helps her tolerate the supplements and medications better.

She was calmer but she DOES NOT sleep. Up every night till 6am, and sleeps an hour. I added some lysine in out of curiosity, since I have always had herpes on my lip, and perhaps she got it at birth from me, to see what would happen and sleep improved. I have never really dealt with viruses before but I need to investigate. Our one doctor wants us to get in touch with someone named Klinghart. He said she is a very tough case. Right now...I am trying to decide my next step. Do I go to hospital, Klinghart, NIH, or what???? She has always been bug eyes and AWAKE since birth. I need some more guidance, with infections, viruses, parasites etc, but I need to make the right choice on my next step. Just kind of lost right now. We have tried lots of other antibiotics not listed. This is just a part of our story. Thanks for listening.

 

PS. We have tried seroquel, melatonin, trazadone etc... for sleep. None work, and most make her violent. It is way more severe than that. It is a virus, infections or something keeping her up.

[JuliaFaith]

We go to a dr. in Dr. Kl's office so I can only speak to what I know. They are called 'Sophia Health Institute' if you want to look them up. We have been going to their office for 2+ yrs. They will only take you as a patient if you are mostly eating just organic food and are open to all types of medicine (allopathic/natureopathic/homeopathic). They use every medicine/treatment that is available and treat aggressively. He does go to Europe every other month, so some of their treatment is unique, but has been used there with success for some time.

 

He does seem to specialize in chronic illnesses and autism. He started and heads up a neurological clinic in Europe somewhere too. The ART muscle testing he uses and teaches is amazingly accurate (at least with our Dr.). It seemed strange at first but they can tell a lot of what is going on the first visit. Every organ is ART tested for stress along with thyroid/adrenal etc. every visit (along with lyme, co-infections, parasites, worms, bacteria, viruses etc.)

 

We started treatment with de-worming/anti-parasite meds. and h Pylori testing along with hair testing for heavy metals and vitamin absorbtion. Every supplement/meds that you take (and there are many and expensive) is tested against the patient to see if that is what the patient wants/needs. Detoxing starts from Day 1. You will leave the office with an entire sheet of suggestions (this gets smaller as you get healthier.

 

Almost our whole family goes to this office now because there is no guessing, only what your body needs at the time.

 

Have heard that the first visit is usually with 3 drs. so it is quite expensive and lasts at least 1+ hour. Do not know how much. The other drs. in the office apparently do not charge as much but the one we go to is excellent. They all consult and talk to each other about cases etc. once a week. Cost per visit goes down in price after first one. You have to pay the day of visit and they do not deal with insurance at all. I submit claims and get reimbursed for a portion of every visit. The supplements I deduct on tax return for medical costs.

 

Hope this gives you an idea of what to expect with this office. PM me if you want any add'l info. Best wishes on finding someone to help with healing!

[tpotter]

I agree with Julia Faith. ART is a great way to go. Things are done slightly differently with different ART practioners, but overall it's the same concept, and they do test every organ for stress, and there truly is no guesswork. In fact, everything our ART told us was going on has been backed up eventually by medical testing! So, it really truly is quite accurate. It is also quite costly, but if you consider the fact that you may not need any other doctor, it might not be so difficult.

 

IMHO you would definitely not be sorry if you went to Klinghardt (do you live near him?) If not, you might be able to find an ART dr. closer to your home.

[SSS]

If what you are saying is true, she actually only sleeps an hour a night,

please get her into a sleep specialist type program,

which should be covered by your insurance.

Something serious is going on,

and she will never heal anything if she cannot sleep AT ALL.

 

How do you handle it as her mother?

Example: she's given a dose of Klonopin or a sleeping pill,

do you shut the entire house down at 10 pm, no lights, no electronics,

she has to stay in her bed, perhaps calming music or sounds?

[T_Anna]

I feel for you, on nights that DS doesn't sleep he walks around the house. In and out if our bedroom looking for the cats and just restless. I often wish he would just watch TV and vegg. It has been better later we had a week where he suddenly started sleeping at 11:30pm to noon the next day. The last few nights he has been up more.

 

Not as bad, but I feel your pain. For a while he would fall asleep at 8am or 9am

As everyone was getting off to school.

 

T.Anna

Ds15

[trintiybella]

She probably would not be alive today if she just slept and hour a day. But she never looks like she's sleeping. You walk past her and her eyes pop open constantly. Her arms flail in a weird way like she is doing OCD all night. She has been for two sleep studies. They showed restless leg syndrome and abnormal brain waves. We put her on miraplex. She went into a rage!!! As far as turning lights out after her sleeping pill and putting calming music on....I just don't know how to explain this, but those things are useless. You can't even get near her to calm her. Her brain fires a mile a minute, she's hallucinatiing and aggressive. When people tell me to give her an epsom salts bath and sing to her, I realize that my child is ALOT different then anyone on this board, I think. Think of someone over dosing on heroine. Dialated eyes, racing thoughts. All I can do is speak calmly, and help her through it. At those times, this kid gets whatever she wants to make it easy on her. She hates if the lights are off at those times. It scares her because she can't stop the racing thoughts and she doesn't want to try to sleep. She's petrified. This is just a little of what this poor kid deals with. I have started video taping and bringing to Dr. Bransfield. He had no idea it was so bad. I do have to add that things are MUCH better on the amphotecerin for yeast. We need to find out why she doesn't sleep though and what is really going on. Not even a yawn. I am putting call out to Klinghart. I did the NAET, the kinesiologhy etc... and no help in our case. I am not so sure this is Bartonella either. I am praying Klinghart helps. I have been all over this country trying to get help. They all just say "she's a tough case"

[PowPow]

My daughter was like this, the heroin comparison is pretty dead on accurate.

There IS a big variation on symptoms and severity on this board, but you are not alone in her symptoms.

My daughter improved initially from this state with high dose steroids, then pex and ivig. Snd lots of time. She is 5 years since onset, and 3 years since first steriods. I would never have believed she would heal, but she is.

Do not lose hope.

 

do you think this is autoimmune?

[SSS]

I'm so sorry, I wasn't trying to minimize.

She hasn't had IVIG yet, right?

What about the Dr. T Anna just went to for her child, who will now receive Pex?

Her poor brain is in overdrive/ inflamed.

Just throwing some feedback out there---

Good thoughts your way for healing....

[trintiybella]

We need to get somewhere fast. Are you speaking of Dr. T. in Ramsey? She is still up and not looking good. Very odd behaviour. I need to get her somewhere quickly. There is also Dr. Bou. in Conn. The thing is I don't know what is wrong with her. She had a Cam Kinase of 166 but no other signs of PANDAS. Was possitive for bartonella but then negative. I am not sure what to do. I am really nervous about hospitals because we started out at Children's and they looked at me like I had 2 heads, when I explained her symptoms.

[T_Anna]

I went to Dr.Schulman in Brooklyn. There is also Dr.Najjar at NYU who treated Susannah Cahalan. In Brain on Fire for Anti-NMDA (N-methyl D-aspartate) receptor encephalitis. That an also exist without seizures.

 

I'll PM you.

 

T.Anna

DS15

[EmilyK]

Would the nighttime stuff be considered seizures? I second T. Anna's suggestion to check Anti-NMDA receptor encephalitis. Hope you find some relief for her soon!

[LNN]

From what I understand, and from what JuliaFaith also says, following a Klinghardt protocol can be very difficult, particularly for kids who won't force themselves to swallow nasty-tasting concoctions. So I think you need to ask their office what's expected from the patient before spending a lot on a consultation. Klinghardt is well known for helping people who couldn't be helped by others. But his approached are unconventional and demanding. Patient compliance is critical for any protocol, so I think you need to understand whether your child could be compliant before traveling to see him.

 

Another option is to see the Klinghardt Academy http://www.klinghardtacademy.com/ and ask if they can provide names of doctors who've completed some of their courses who are local to you.

 

My kids' LLMD has attended a number of these trainings yet he works with a lot of kids and has modified some of Klinghardt's concoctions to be more palatable to kids (e.g. putting artimisin into capsule form so it doesn't have a taste, omitting some ingredients that push to costs out of reach). It's possible there may be help closer to you and you may want to call to investigate. If you had to fly to see Klinghardt, you'd have to be prepared to make that trip many times per year.

[PowPow]

Trinity, where do you live ? I may have some other.suggestions. You can pm if you like.

Can you tell us more about about your daughter?

Age? Non verbal/verbal? Autism symptoms?ocd? Sudden onset or exacberation? Non neuro physical symptoms?

Edited July 1, 2013 by PowPow

[trintiybella]

I called to get into see Dr. Najjar months ago. I told the receptionist my child's symptoms and she brushed me off quickly and rudely. She said this is not the doctor for you. I can't remember if she had Anti-NMDA checked but I recall that she may have. Dr. T. and others did tons of blood work. Does that sound like something he would have checked. I have to go through all paper work again. Klinghart is not for us then. We started with tons of concoctions etc. We need immediate help. Shes still up. its always been like this but got so much worse

Edited July 1, 2013 by trintiybella

[lfran]

That is not part of dr t's initial panel of tests