Heartbroken--I feel like were losing ds, age 6

[Sirena]

I am heartbroken and in anguish. I feel like I'm losing my DS bit by bit. He just learned to ride his bike with out training wheels in May, around the time this mess started and he was so happy and proud of himself. He wanted to ride and ride. He was planning to kayak all summer in his own kid size kayak he got for Christmas. Now all he wants to do is watch TV and play Lego. He keeps spiking low grade temps (99.1-99.9F) and his behavior becomes horrible and aggressive. He's on steroids and antibiotics (Dr. L) but now his other doc thinks he may be having seizures. I feel like he was doing better on ibuprophen...idk....Now I'm starting to worry about whether he'll be able to go to first grade or not. I'm also thinking that if we don't get headway in the next two weeks, we might have to arrange something so that his younger sister is spared from his behavioral outbursts. I am so so sad...I think there should be "PANDAS Coaches"....how can one negotiate this strange territory????

[emst]

Does he also have Autism?

The TACA organization can match you up with a mentor, ask if they have a PANDAS mentor. https://www.tacanow.org/

 

Hope it helps, Erin

[dasu]

We are in very similar straits. My 6 yo daughter sees Dr L and has improved, but after a strep exposure this spring has regressed. Its very difficult to determine what she is going on in her head, she is irritable, ADHD yet has low energy, gas severe separation anxiety, depression and OCD. She is doing steroids and abx (clindamycin) but isnt improving, so we think she may be in for round 2 IVIG.

 

I am not sure where you are on the PANDAS journey but we have seen ups and downs with treatment. There are a few strands of thought here, namely the standard steroids/abx/IVIG/PEX; as you are seeing Dr L I assume you are following that.

 

There is also the infectious disease trigger path looking Lymes, coxsackie etc. Have you looked at that?

 

I made a post regarding frustration at lack of progress (2.5 years) and we will start testing for mold.

Edited July 20, 2015 by dasu

[rowingmom]

I agree with dasu. If treating PANDAS is not working, you need to investigate PANS triggers. Bartonella, babesia, and with seizures, ehrlichia. Aggression and raging is often caused by bartonella infection.

 

Please don't give up. Your child will improve when you target the proper infections.

 

Check for methylation defects, which can be caused either by genetic deletion or simply result from the methylation cycles being overwhelmed by toxins (produced either by bacterial die-off or by pesticides/metal adjuvants in vaccinations).

 

Try to eat as organically as possible. Glyphosate acts as both an antibiotic (will kill beneficial gut bacteria which is a significant part of the immune system) and a mineral chelator (will tie up essential minerals found in both plant and animal food, rendering it unavailable for absorption).

 

http://www.mdpi.com/...-4300/15/4/1416

 

http://articles.merc...th-effects.aspx

 

http://people.csail.mit.edu/seneff/

 

Be aware than almost all conventional legumes and grains are sprayed with glyphosate (RoundUp) before harvest to help to uniformly dry the plants. If wheat, beans etc. don't say "organic", they are likely sprayed. GMO's get a double whammy.

 

Most GMO's are grown to feed CFAO animals. Glyphosate is stored in their tissues and we eat it when we eat conventionally raised meat. Try for grass fed.

Edited July 20, 2015 by rowingmom

[nicklemama]

When PANDAS kids fail to get better, it's time to look at Lyme and coinfections. Been there, done that.

[dasu]

When PANDAS kids fail to get better, it's time to look at Lyme and coinfections. Been there, done that.

How do you define failure here? Does it mean recovery then relapse? Or does it mean failure to show any significant improvement?

[rowingmom]

When DD13 was 9 she had an almost complete resolution of symptoms (ticcing, raging, urinary frequency etc. etc.) during an initial 10 days of PenVK for strep. But within 4 days of discontinuing the abx she relapsed completely, sore throat and everything PANDAS. I went to the PCP for another rx, which he wrote but told me not to use it until the culture came back.

 

Being the good compliant mother I am, I immediately started her back on abx and once again her symptoms resolved. But this time only for the first 5 days. After that, and while still on the abx, her symptoms started returning.

 

The culture was negative.

 

So either she was herxing or the PenVK wasn't covering the infections I now know she had. Hard to tell. But that is what sent me on the path of investigating infection.

 

Our ped psychologist suggested PANDAS to me, but then in the second breath she told me that IVIG would not be available to us, and being Canadian (southern Ontario) we had no alternative.

 

My next best option was to consult with the LLMD in Buffalo who immediately told me about PANS, clinically diagnosed DD with bartonella, and we were on our way to recovery.

[pr40]

sirena, there is nothing in your signature and we can't tell what it is that you tried other than what you metion in your post.

 

I disagree with some of the posts above, even if the issue is caused by other infections, the treatment would be very similar or the same.

you may want to look at qanni??'s post made today for some ideas.

our son is agressive when he eats sugar and/or dairy.

Edited July 20, 2015 by pr40

[rowingmom]

I disagree with some of the posts above, even if the issue is caused by other infections, the treatment would be very similar or the same.

you may want to look at qanni??'s post made today for some ideas.

our son is agressive when he eats sugar and/or dairy.

 

Please don't dissuade others from considering coinfections if they have only ever tested for lyme. These can be stand-alone infections even if lyme is not an issue.

 

Treatment is not similar or even vaguely the same. Babesia is a protozoa and will not respond to the antibiotics given for strep. It needs to be treated with antimalarial drugs or herbs.

 

Bartonella is becoming resistant to many monotherapies and rifampin is often needed.

 

I'm not saying that food sensitivities aren't involved. Our foods, especially conventional sugar, meat/eggs, dairy and grains are highly contaminated with gut/immune system destroying pesticides and is associated with neurological pathologies. It acts like a chelator, attaching to important minerals and rendering them unavailable to the body.

 

http://surgicalneurologyint.com/surgicalint_articles/glyphosate-pathways-to-modern-diseases-iii-manganese-neurological-diseases-and-associated-pathologies/

 

Manganese (Mn) is an often overlooked but important nutrient, required in small amounts for multiple essential functions in the body. A recent study on cows fed genetically modified Roundup®-Ready feed revealed a severe depletion of serum Mn. Glyphosate, the active ingredient in Roundup®, has also been shown to severely deplete Mn levels in plants. Here, we investigate the impact of Mn on physiology, and its association with gut dysbiosis as well as neuropathologies such as autism, Alzheimer's disease (AD), depression, anxiety syndrome, Parkinson's disease (PD), and prion diseases. Glutamate overexpression in the brain in association with autism, AD, and other neurological diseases can be explained by Mn deficiency. Mn superoxide dismutase protects mitochondria from oxidative damage, and mitochondrial dysfunction is a key feature of autism and Alzheimer’s. Chondroitin sulfate synthesis depends on Mn, and its deficiency leads to osteoporosis and osteomalacia. Lactobacillus, depleted in autism, depend critically on Mn for antioxidant protection. Lactobacillus probiotics can treat anxiety, which is a comorbidity of autism and chronic fatigue syndrome. Reduced gut Lactobacillus leads to overgrowth of the pathogen, Salmonella, which is resistant to glyphosate toxicity, and Mn plays a role here as well. Sperm motility depends on Mn, and this may partially explain increased rates of infertility and birth defects. We further reason that, under conditions of adequate Mn in the diet, glyphosate, through its disruption of bile acid homeostasis, ironically promotes toxic accumulation of Mn in the brainstem, leading to conditions such as PD and prion diseases.

 

We supplement minerals and methylated B vitamins and eat as organically as possible - no wheat, no dairy (except a bit of kefir), no sugar.

 

You are right that diet and supplementation are important, but they may not be the complete answer.

[nicklemama]

I came to this board in 2010, after my son had been suffering for a year without treatment. I was encouraged to seek treatment, even though my son never had strep and his titers were normal. I traveled out of state and treatment started helping but he never got really well. All during this time, any suggestion of looking for Lyme was met with strong opinions and objections by many and people got quite nasty about the mere suggestion of looking for Lyme, so I stayed the course with PANDAS and the board spun the Lyme group off separately.

 

In two years, I spent tens of thousands of dollars on IVIG and expensive PANDAS providers out of state. My son got marginally better then relapsed after each IVIG.

 

I found a local doctor who was beginning to treat PANDAS. She was also treating kids with ASD and quite a few Lyme patients unbeknownst to me at the time. She suggested to me my son needed to be tested for Lyme and coinfections. Surprisingly, he came up positive. It really bothers me, nearly five years later, to see others so easily discount and discourage a look into Lyme. I waisted valuable time and money by not looking into all infections before pigeon holing my son and taking even more time to achieve wellness.

 

I sincerely hope this board is not going to go down the no Lyme road again. It's a disservice to every child.

 

I don't know how long Sirena has been at this. She doesn't say in her signature. What I meant above is, if PANDAS treatment is not working or your child is relapsing and not achieving a good and lasting wellness, it's time to look at other things. Treating PANDAS does not treat Lyme, of that I can tell you absolutely and for certain.

Edited July 21, 2015 by nicklemama

[rowingmom]

It really bothers me, nearly five years later, to see others so easily discount and discourage a look into Lyme. I wasted valuable time and money by not looking into all infections before pigeon holing my son and taking even more time to achieve wellness.

 

I sincerely hope this board is not going to go down the no Lyme road again. It's a disservice to every child.

 

I don't know how long Sirena has been at this. She doesn't say in her signature. What I meant above is, if PANDAS treatment is not working or your child is relapsing and not achieving a good and lasting wellness, it's time to look at other things. Treating PANDAS does not treat Lyme, of that I can tell you absolutely and for certain.

 

One of the problems is the actual term "Lyme" itself.

 

Many people believe that if they test for "Lyme" and the result is negative, that they have investigated the issue and can move on.

 

They don't realize that Lyme disease isn't caused by a single bacteria, but a whole host of possible coinfections (bartonella, the babesias, ehrlichia, anaplasma, RMSF, mycoplasma and viruses) as well.

 

In all of my years on lyme boards I have found not one single instance of someone only infected with lyme (Borrelia burgdorferi). I can spot the Newbies because they are trying to discuss "Lyme" and only "Lyme", ignoring others suggestions that they have proper testing for coinfections.

 

Even the well known LLMD's, Horowitz and Klinghardt say that lyme (Borrelia burgdorferi ) is not the issue in the more serious cases. It's the other coinfections that are causing the significant problems.

 

In my opinion there needs to be a new name given to the multitude of infections that are the true cause of this disease. Singling out one infection and calling the constellation of symptoms by that name "Lyme" is insufficient.

Edited July 21, 2015 by rowingmom

[nicklemama]

Yes, I agree Rowingmom. When I say Lyme I am implying Lyme and or coinfections. I use that term because most recognize it. Fact is, my son actually has MSIDS. Multiple Systemic infectious Disease Syndrome with Lyme and coinfections at the root of it all.

[pr40]

 

I disagree with some of the posts above, even if the issue is caused by other infections, the treatment would be very similar or the same.

you may want to look at qanni??'s post made today for some ideas.

our son is agressive when he eats sugar and/or dairy.

 

Please don't dissuade others from considering coinfections if they have only ever tested for lyme. These can be stand-alone infections even if lyme is not an issue.

 

Treatment is not similar or even vaguely the same. Babesia is a protozoa and will not respond to the antibiotics given for strep. It needs to be treated with antimalarial drugs or herbs.

 

Bartonella is becoming resistant to many monotherapies and rifampin is often needed.

 

I'm not saying that food sensitivities aren't involved. Our foods, especially conventional sugar, meat/eggs, dairy and grains are highly contaminated with gut/immune system destroying pesticides and is associated with neurological pathologies. It acts like a chelator, attaching to important minerals and rendering them unavailable to the body.

 

http://surgicalneurologyint.com/surgicalint_articles/glyphosate-pathways-to-modern-diseases-iii-manganese-neurological-diseases-and-associated-pathologies/

 

Manganese (Mn) is an often overlooked but important nutrient, required in small amounts for multiple essential functions in the body. A recent study on cows fed genetically modified Roundup®-Ready feed revealed a severe depletion of serum Mn. Glyphosate, the active ingredient in Roundup®, has also been shown to severely deplete Mn levels in plants. Here, we investigate the impact of Mn on physiology, and its association with gut dysbiosis as well as neuropathologies such as autism, Alzheimer's disease (AD), depression, anxiety syndrome, Parkinson's disease (PD), and prion diseases. Glutamate overexpression in the brain in association with autism, AD, and other neurological diseases can be explained by Mn deficiency. Mn superoxide dismutase protects mitochondria from oxidative damage, and mitochondrial dysfunction is a key feature of autism and Alzheimer’s. Chondroitin sulfate synthesis depends on Mn, and its deficiency leads to osteoporosis and osteomalacia. Lactobacillus, depleted in autism, depend critically on Mn for antioxidant protection. Lactobacillus probiotics can treat anxiety, which is a comorbidity of autism and chronic fatigue syndrome. Reduced gut Lactobacillus leads to overgrowth of the pathogen, Salmonella, which is resistant to glyphosate toxicity, and Mn plays a role here as well. Sperm motility depends on Mn, and this may partially explain increased rates of infertility and birth defects. We further reason that, under conditions of adequate Mn in the diet, glyphosate, through its disruption of bile acid homeostasis, ironically promotes toxic accumulation of Mn in the brainstem, leading to conditions such as PD and prion diseases.

 

We supplement minerals and methylated B vitamins and eat as organically as possible - no wheat, no dairy (except a bit of kefir), no sugar.

 

You are right that diet and supplementation are important, but they may not be the complete answer.

 

indeed, I should have excluded Lyme from my suggestion.

[mama2alex]

I'm so sorry. I've been where you are - pretty much everyone here has. Early on, once I finally got my raging, obsessed, terrified 9yo to bed, I'd go out for a drive and cry my eyes out almost every single night. It's horrifying and terrifying to watch your child go through this - and it's so lonely.

 

Reach out to people on this board through PM. Arrange phone conversations and try to meet someone from your area in person. You can read and research all day, and that's essential. But connecting with other parents is crucial to your well-being.

 

I noticed in your first post you said he'd been tested for Lyme due to exposure to ticks, and it was negative. Can you share what test was done? Was he tested for coinfections such as Bartonella, Babesia, Erlichia, Anaplasmosis, or Mycoplasma? I agree with others who've suggested looking for Lyme AND coinfections, but it's also important to get the right tests from the right lab, and have the child and test results evaluated by the right doctor. You can get lots of advice on the specifics of all this on this forum.

 

Hang in there. You WILL get him well!

[HopeinHIM]

Now that I have stopped crying from reading your post, I can join in with these wise women. DO NOT GIVE UP!!. Your story was/is my story. Our son has PANS/Bart/Babasia. Many doctors and much $$ and finally we began to treat Bartinella and Lymes and he is coming alive again!! We began by treating just PANS/ cox socci. Labs said NO co infections or Lyme's so I moved on. One horrible year later I revisited the possibility of Co infections thanks to this forum. Our son can't detox so we go very low and slow on Rifampin. We have implemented lots of detox herbs along the way along with organic clean food and WATER!!! Certain children with specific genetic predispositions can not handle all the crud that is in our environment and food so they fall apart physically and psychiatrically AND (infections can push them over the edge). We were told by the best PANS docs and top ND's that Lyme's didn't seem like part of the picture. But then, one LLMD disagreed and encouraged us to treat. Our PAND doctor (who I still use for various reasons, still is NOT interested in the LYMES component)BUT I can tell you that my raging, OCD, mentally crippled child is returning. NO more raging and no more OCD. He is laughing again (thank God)He will tell me "Mom, my head is clearing and I am feeling like old me!!" Rowing Mom is giving you amazing information. Read and apply! Do not give up. Your boy is inside there and persevere until he returns. He is the child who wants to bike ride and canoe but inflammation has sabotaged his mind for now. Our 6 year old niece is manifesting the exact same symptoms as our son (your son) did and we are immediately investigating co infections. Not waiting on labs. During the 23andMe test we find that she has the same genetic mutations as our son. (detox issues, Methyl issues)

For some children the steroid bursts and prophylactic anti B's hold them. However, Steroids can be very bad for PANS/Lyme's kids. This is a journey and no two children are the same. I have also discovered that NO doctor knows all . Each seems to have only a piece of the puzzle. It will be up to YOU to put it all together to bring him to the finish line!!