New, overwhelmed

[dswm]

Hoping I can find some support here, maybe bounce some ideas off of people....I don't know. Feeling very overwhelmed by all of this.

 

Last spring, March 2015, my 9 year old son had sudden onset of very severe eye rolling tics--every 3-5 seconds. It was spring break at school. I took him to his pediatrician googled, and started magnesium. Within two days, the tics were very mild, and most people never noticed them after that at all. They never went all the way away.

 

On November 14th, we tucked my son in to bed, and he took a breath, then began coughing severely. We tried every home remedy for cough, ended up having to take him to the ER because he was having such difficulty breathing.....To make a long story short, in one week he went to ER three times, saw an ENT got his throat scoped, saw his pediatrician, saw a pulmonologist, and finally saw a neurologist. The coughing is a tic. The initial brutal coughing tics were episodic in nature, lasting 2-4 hours. Those have changed to a constant (15-30 times per minute) cough/grunt/forceful exhalation thing that is not so brutal in nature but is unrelenting. In addition, my slightly nervous child has developed nearly debilitating anxiety either in conjunction with, or as a result from, this coughing tic.

 

Sometimes I feel like the child I had died. He's not the same kid he was a month ago. He took one single breath, and everything changed. He's such a great kid, and he doesn't deserve this. No one's child does.

 

The coughing wakes him up from sleep, so he is taking melatonin. He is on guanfacine 3 mg and started zoloft 25 mg a few days ago. He takes multivitamin, omega 3, magnesium, vitamin D. We make sure to get in our citrus every day for vitamin C. Since they are ongoing, I haven't been able to pinpoint any connection to foods or anything else.

 

His anxiety is so severe that we have started to homeschool him. The anxiety made his tics worse, caused panic attacks about school, and we were looking at having to medicate him even more just to get him to school. I didn't want that.

 

This latest episode started 11 days after his FluMist. He had also had the flu about two months before his initial onset of motor tics. Related? Perhaps. He's also gained 20 pounds in a year despite no changes in eating patterns or activity levels, and over the past year has developed a chronic temp of 99.3-100.0. His labs, MRI, EEG, strep titres are all perfectly normal. His neurologist seems unimpressed by the weight gain and low temps but I wonder if it's all related. I really do like my neurologist, mostly because she is available to me pretty much 24/7, and that has done a great deal to ease my mind. She did say that even if it was related to the flu, that treatment wouldn't be any different. Not sure if that's correct or not. I am seeking a second opinion though.

 

Not sure what I'm even looking for with this post. I'm completely overwhelmed. Advice? Words of encouragement? Ideas? Similar stories? I've googled until my eyes have crossed.

[Sheila]

Hello dswm. I wanted to welcome you to the forums and offer my sympathies for all you are dealing with. It is no wonder you are overwhelmed. The relentless coughing in itself is so much to deal with, and then anxiety, ER and doctor visits, plus medications on top of it all.

 

You are to be commended for all the reading you have done, and all the doctors you have seen. It is clear you don't want to leave any stone unturned in your search for help.

 

Your description of the terrible feeling that it was as if the child you knew had died is sometimes mentioned when an underlying infection is causing a severe neurological reaction. The abrupt change is dramatic and distressing.

 

Other very significant environmental insults can cause similar symptoms.

 

The FluMist has been associated with a range of side effects, and tics and other responses have been reported by parents on these forums. It is difficult to know of course if that was the precipitating cause in your son's case.

 

With all your googling you may have come across the term PANDAS or PANS. Here is a brief summary that you could check out and consider in light of your son's case. summary.

We have an e-book on the topic here.

 

Did any of the doctors prescribe an antibiotic at any point, and did you see any change in symptoms with that?

 

Just wondering -- have you tried taking him off of milk and eggs as an experiment to see if it takes the edge off? Not that this is the ultimate cause, but it might be worth trying to see if it helped to any degree.

 

Also, since it is respiratory related, it is important to use all the approaches one normally would for allergy/asthma in the home.

 

Does your family have any history of asthma or allergy?

 

Since you seemed to find magnesium helpful before, you could consider warm epsom salt baths if your son would be OK with those.

 

Of course the key is to get to the main precipitating factor, and if it is an infection that will require additional testing.

 

I know you will be hearing from other parents with specific suggestions. With the holidays, parents are sometimes more tied up than at other times, but I am sure people will want to help you with you difficult situation.

 

Hang in there, and I look forward to hearing back from you.

[LNN]

I have two kids - one had Pandas, lyme disease and a mold sensitivity. The other has a severe mold sensitivity that produces neurological issues. So your post made me think of several possible causes.

 

First, as Sheila mentions, I'd look into Pandas/Pans. Even tho your son's strep titers were normal, that doesn't mean much. There are two strep titer tests - one is called ASO and it peaks between 1-3 weeks after an infection. The other is called anti-DNase B and is ordered much less often. It peaks around 6 weeks after an infection. So if you take a titer test at the wrong point in time, it may come back in the normal range, not because there wasn't strep but because you didn't test during that titer's peak time range. So high titers can give you info but normal titers don't mean there isn't or wasn't an infection. So it's worth exploring further.

 

Second, when my son developed Pandas, I spent two years insisting that was all that he was dealing with. His symptoms started right after a strep infection. Come to find out that chronic lyme can produce virtually the same symptoms as Pandas because the proteins on the outer layer of a lyme spirochette are similar to the proteins on the outside of a strep bacterial cell and there are tissues in the body (in the brain and heart) that also look similar to a confused immune system. This similarity is what causes the "molecular mimicry" that might be behind Pandas and rheumatic fever. Well, my son had been bitten by a small tic a few months prior to his strep infection. So lyme was there all along and I'd been searching for just strep. Mycoplasma (the bacteria that often causes pneumonia) is also a big trigger. There was also a research paper published this week that explains how the sinuses are actually a huge trigger for Pandas neurological symptoms. After finding that mulitple infections can trigger the neuropsych symptoms in Pandas, the NIMH made Pandas a subset of a larger autoimmune disease called PANS. So if your gut tells you there's a trigger, infections are certainly worth investigating. It's especially telling that you talk about such a sudden change in your child. In that case, treatment would not be the same as it is for a tic disorder. It would include antibiotics for an extended period of time.

 

If you want to learn more about lyme, read Pam Weintraub's "Cure Unknown" which talks about why Lyme is so under-diagnosed and why standard lyme tests are so unreliable. You can also read through the site http://www.ilads.org and other lyme non-profit sites.

 

Just when I thought we'd gotten rid of infections, when my son was doing so much better, he'd get an eye tic in the spring and fall. After a long search, I found out that mold was causing the remaining tic. I found mold inside the drum of my washing machine, on my son's window that was next to his fish tank (lots of moisture and water with bacteria make a great set up for mold). He once had an eye tic that we tried to get rid of for months - and it went away two days after we found the mold near the fish tank (we got rid of the fish tank soon after). It was also in his school and he got much, much better when he moved out of that environment. I'm now homeschooling my daughter because the same school made her extremely ill.

 

The weight gain you describe - could it be from medications? If not, mold is also known to cause rapid weight gain. Crazy, right? If you want to look into it more, a good website is http://www.survivingmold.com The book "Surviving Mold" by Dr Ritchie Shoemaker is also helpful.

 

I don't mean to overwhelm you with so many ideas. But for my kids, it was more than just one thing that lead them back to help. Like you, I lost my kids almost overnight and spent a very, very long time getting them well again. Many doctors weren't able to help because they were stuck in one way of thinking. But with the help of Latitudes communities, I was able to peel away the layers with the help of an awesome osteopath. You just can't ever give up or stop fighting for the son you know is still inside. You will get him back.

 

I'm not on the forums very much these days - working and homeschooling. But if you'd like more links or have questions, please feel free to send me a private message (there's an image of an envelope in the upper right corner of this forum) and it will go to my personal email.

 

Stay strong. Tics and anxiety are hard to live with but when you find and remove the trigger(s), the body heals.

[dswm]

Hi, thank you for your replies.

 

I guess I am on this board because I do, in my heart, think there is something else going on. The change was so sudden, so dramatic, I don't believe it is just a regular thing. We don't have any Tourette's in my family or in husband's family, though my older daughter did have a transient vocal tic a few years ago. It was just a throat clearing thing and was so mild and short-lived that I've only identified it as a transient tic in retrospect, given everything that is happening with my son right now.

 

So my big question is---how do I find a doctor that is willing to look more deeply and outside the mainstream? I should say this: I have work experience that involves investigating doctors---there are a lot of them out there who prey on people's fears for financial profit. The one doctor in my area (found by searching this forum) who I've found who does PANDAS does not take insurance, and that can be a red flag.

 

My inclination is to believe it's PANS from the flu. He had been diagnosed with flu two months before the eye tics started and had flumist 11 days before the vocal tics started. How could that even be tested for or proven? He's had the vaccine, so of course there are antibodies in his system. And if that's what it is, how could that even be treated?? And what is the long term prognosis---flu is so prevalent every year, I can't just keep him in a bubble forever worried that someone might breathe on him. My brain freezes up just trying to think of all of this.

 

To answer the questions:

-My son was placed on an antibiotic standard course Zithromax at the beginning of this. It did not even slightly lessen the symptoms..if anything, they got worse. He was placed on it because one of the ER doctors did a pertussis test (out of an abundance of caution) and it is standard procedure to give an antibiotic until the test is proven negative. Though it was negative, I continued the full course of antibiotics.

-He also took a course of steroids. This was prescribed more as a "let's try this." There was no change even in the slightest with the steroid.

-All labs perfectly normal

-We are trying GFCF after Christmas. I don't feel that we need to cut everything out right now over the holiday---the poor child is dealing with enough already without having to give up a Christmas cookie just so mommy can experiment! That said, we are nevertheless dramatically limiting sugar even over the holiday, and we are dramatically cutting back on gluten and casein. Pretty much, we've eliminated it from his routine diet, but if he wants a Christmas cookie for desert, then that's ok. We'll go hard-core on it after Christmas.

-No history of asthma, but we all have seasonal-type allergies, more in the spring. My home is pretty clean and free of clutter, and when this came on, I literally pulled every single thing out from his room and cleaned his room from top to bottom, even dusting the tops of the doors and curtain rod. There's no mold around the windows or in his bathroom, or in the rest of the house that I can find. I'm a bit of a clean freak.

-Weight gain/meds: he wasn't on any medications before this started, except for the vitamins that we had kept up because of the eye tics. But he had gained quite a bit of weight over the past year.

 

Thank you all so much for your insight and experience.

 

-Rebecca (Houston, TX)

[LNN]

Nearly every doctor in the country who specializes in Pans, lyme, mold or other chronic illness does not take insurance. It doesn't mean they are trying to prey upon patients. It means they don't feel they can effectively treat a complex medical case in the 15-20 min visit that insurance will reimburse for. Most spend 30-45 mins per patient. They then provide a claim form that the patient can submit to insurance. In general, once a patient has met the deductible, the claim will be covered at 60% as an out of network provider. As I said, this is a near universal situation for these chronic illnesses. There are better and worse physicians, to be sure. But the not taking insurance isn't in and of itself a flag in this type of situation.

 

If you think a virus was the trigger, the next question is - is there current inflammation of his sinuses? There was a research paper published this week that explains the autoimmune actions that take place in Pandas - the antibodies against a respiratory infection migrate up the nasal tissues into the olfactory bulb and then weaken and cross the blood brain barrier. From there, autoantibodies trigger neuroinflammation of the amygdala - the center of the fight or flight response. The study found that these autoantibodies persist long after the initial infection - 56 days at least. They also found that subsequent infections - even viruses, staph and mycoplasma - can trigger the same autoimmune response. So they keys become - clearing infections and keeping the immune system calm for a substantial length of time.

 

Can you keep him in a bubble? Of course not. But you can ask for a nasal culture and even if it's "just staph" and you're told that everyone has staph in their noses, in a Pans child, this isn't as harmless as it is to others and would need to be treated. Most Pandas kids start to show improvements once the infection is cleared. If it's not calming down, it often means the source of the infection is still lurking. Sometimes the antibiotic you've used isn't the right match for the infection you have. Zith is commonly used for Pandas but isn't great for nasal infections. If it's viral, you'd need an anti-viral and not an antibiotic. Prednisone is very helpful for inflammation but if the infection is active, it won't be successful because the source of that inflammation is still there.

 

Many doctors dismiss Pans out of hand, despite a growing body of evidence to the contrary. Your posts have many flags that say "Pandas" - sudden onset, flu mist, symptoms that match the disease, and (I assume because you're posting) a lack of improvement from the medications he just started. But it isn't for me to say what's causing all this. Only you can decide what strikes a chord.

 

One final thought - my daughter used to have a chronic cough that got much worse at bedtime. We put allergy covers on her mattress and pillows and the cough went away immediately. If you have carpeting, stuffed animals, etc you may want to consider removing those.

[dswm]

Just an update,

 

Overall my son is doing better. His vocal tic was constant from November 14-Jan 6 then became episodic with an overall decreasing intensity and decreasing frequency. He's now at a point where he typically spends more time NOT ticcing than he does ticcing. The silence has never been more welcome! He is sleeping better and his color is improved. He simply LOOKS healthier right now.

 

We have tried dairy/casein free...I thought I saw an improvement after the first week of doing it. Added it back for a few days and saw more tics. However, at that time he also had a urological condition that required a minor surgery, so result interpretation was confounded by stress from surgery. After he recovered from the surgery, we tried it again with results that were ambiguous (I thought overall tics were improved, but then he had his worst episode in over a month while we were off casein as well as an increase in more moderate intensity but short-duration tics.) We've stayed off of it regardless---it was hard at first and is easier now---I'd rather just stay off and continue to see how he does. I can't deny that he is overall better in a general sort of way, even though he is still having occasional episodes of moderate vocal tics. I'm not sure if that overall improvement is related to a regular waning cycle or to our dietary modification. We'll stay off of it and see how it impacts the waxing/waning over time.

 

We are about to start gluten free, which I've read can take anywhere from days to weeks to really be able to see results. I've read quite a bit about gluten causing psychological problems as well, and anxiety has become as big as an issue for my son as tics, so I'm eager to see if gluten free helps.

 

We are currently pending results for lyme testing, mycoplasma, a couple other viral panels that I can't recall right now, and an autoimmune encephalitis panel.

 

Pending the results of gluten free trial and the new labs, I may take him to the known PANDAS doctor here in Houston to see about further testing, and perhaps to an environmental doc. I do have an article I will show our regular neurologist at out next appointment regarding PANDAS and late-stage testing recommendations, specifically anti-dopamine receptor antibodies. Those were not included in our last blood work. Our neurologist is a very kind person who really treats my son like a person and not just a case file. She's never spent less than an hour with us at an appointment, never been hurried. When he was having the most trouble with tics, she called or emailed daily to check on him. I have her cell phone and an invitation to use it whenever needed, though I wouldn't ever take advantage of that. It is rare to find a doctor like that, and I really don't want to lose that. It is comforting to me. I can discuss PANS with her openly, though I am not actually sure what side of it she lies on. My approach when asking for testing is "It's a simple blood test, and it can't hurt to check, and he deserves to explore every possibility."

 

The worst of everything, the vocal tics and severe anxiety, started less than three months ago. When I think about it, it feels like forever. However, I think we've come pretty far in that time. Motor tics started nearly a year ago. As it turns out, my son has been having some pretty substantial anxiety for years, though he was adept at concealing it. I think the vocal tics brought him to a breaking point in regard to his anxiety.

 

So that's where we are now. Still figuring things out, but making progress.

[Jetocurly4]

Thinking about you. I remember when this all started with my son the roller coaster ride we took as well As parents we get in this mission to figure out why this happened to our kid, how and what to do. We also have zero history in our families. My sons started younger, he was two when signs came out, he's 9 now. In my heart I felt vaccines triggered them! I could be wrong but its what I believe. I stat away from those, went totally organic, give him magnesium and extra B vitamins, no dyes or candle scents, always prepare him because of excitement, keep him active, he took karate for years and got his black belt, now he stays active with other sports. We have our UPS and downs but overall thank god, he is doing good! Magnesium really helps. He also grew up with lots of croup and upper respiratory infections. He also needed a urology surgery ( I always look for relations). Keep the faith, things will work out. I joined some great Facebook groups too, support is helpful, most people who have not experienced a tic kid don't understand so getvsupport, it helps! Big hugs!

[dswm]

I'm feeling totally discouraged. A couple of hours after my last post stating that my son was overall doing better (on Feb 3), he abruptly began severe ticcing again. He has done it pretty much constantly since then. So, we are going on two weeks of mostly non-stop ticcing. His most bothersome tic is a verbal tic. When the verbals began in November, it was a cough. It has morphed now into a mix of a grunt and a mmmm sound. They have begun to run together so fast that it sometimes sounds like he is letting out a loud wail. He has been trying to hold his chin up, but I can tell it's starting to wear on him. His motor tics get worse when the vocals get very bad; it's like a storm in his brain.

There are times he can not manage to eat for sake of the vocal tics. Mentally, when they are like this, he finds it difficult to do anything at all.

We are doing magnesium, p5p, zinc, multivitamin, flax oil, calcium. Gluten free, casein free.Very limited sugar. Very limited refined foods. Organic. Clean and scrub everything all the time, but using natural cleaners. His regimen is all-consuming in our lives, and it's not working!!!

 

His neurologist mentioned perhaps it is a auto-immune, infection-triggered tic. I was really pleased to find a mainstream type of doctor say that. And then.....this weekend my mother-in-law told me that she had a aunt who blinked non-stop her whole life, and that my husband's cousin always had this weird shoulder-shrug for years, and that my son's cousin had some pretty substantial tics when he was younger. "But nothing like Ben is doing," she said. She means no one had vocals. When she previously said there was nothing like this in our family, it was because she hadn't yet been educated on what tics were. Knowing that TS is thought to be a spectrum disorder, this news rocked me. So, now I'm wondering if this is just genetic. We've noticed that DD12 has a couple of mild tics too. We didn't ever notice them before, but we observed them recently When she had a cold. DS's flare occurred on day 3 of DD's cold. Genetic? Trigger? I can't be sure of either one. Neuro mentioned possibility of a steroid burst trial......if it is an autoimmune trigger this will help. If it's genetic TS, I've heard that can make tics worse.

 

Son cried and had asked to please take medicine to help and give him some relief. He has constant, strong tics morning until bed. He wants medicine. We have already done some medications--Guanfacine didn't work, had an adverse reaction to a low dose of topamax on the second dose, and is now trying a clonidine patch, which isn't really working. The only meds left are the scary ones. We don't know what to do.

[Prayingmom]

Hi dswm,

 

I prayed for your son before writing this post. I can deeply sense your pain as a mom watching her kid suffering but nothing can help. Life goes on and we have to be strong for our children. Take care!

[Sheila]

Hi dswm, I have just now sent you a PM and hope you could please write a PM back to me.