New Here - Seeking Support and Guidance

[browneyedgirl]

Thank you so much to everyone who participates in these forums. I have already found so much comfort and support in reading your words over the past year when our son started having vocal tics out of the blue. I am sharing our story for the first time now because of some recent developments that are causing us great concern. I have tried to provide as much information as possible and apologize for the very long post. I am posting this in the PANDAS forum but am not sure if the Tourette forum fits our son's profile better.

Mid-February (2015): Our just-turned-four year old son, “A,” started making a repetitive vocalization that sounded like a faint, high-pitched tone. Over the course of a week or so, it morphed into a very loud involuntary squeaking noise that, at it’s worst, could occur multiple times in a minute. We went to see our family doctor, who examined “A” and reassured us that childhood tics were a somewhat normal occurrence and that “A” would probably grow out of them. We went to see a pediatric neurologist who talked to us about transient tic disorders (and the long-term possibility of Tourette Syndrome) and sent us on our way.

Over the past year since the first tic appeared, there have been several cycles of tics being more and then less prevalent. They always appeared to be vocal in nature and included sounds such as humming, coughing, sniffing, and exhaling loudly. Sometimes they were confined to a specific time of day, like at meals, or at bedtime when we were reading books. Other times they waxed and waned throughout the day with no predictable pattern. We did our best to not call attention to them and to try to reduce “A”s anxiety when they occurred. In October we introduced an air filter in his room and observed a (perhaps coincidental?) reduction in the frequency of his vocal tics. In fact, for a period of time from about Thanksgiving until mid-January, we did not observe any tics and began to wonder if perhaps he had “outgrown” the tics as his doctor had suggested could happen sometimes.

Then, on January 20 (2016) he peed his pants at school during an engrossing activity. This had never happened before. Over the course of the next several days, “A” continued to pee in his pants, often several times a day. We took him to the doctor to test for a UTI, which came back negative. We have since deduced that the peeing happens when he involuntarily tightens his abdomen - perhaps a new motor tic.

Around this same time, “A” started having trouble sleeping again. He asked for Mom or Dad to lie next to him as he was falling asleep, and on multiple occasions he has awoken in the middle of the night and asked for one of us to sleep in his bed with him. Once, when I (Mom) was lying next to him in bed as he was falling asleep, he mentioned that he saw “red Santa Clauses” and “red buses” all over his wall. He asked if I could see them, too, and then (possibly covering up) said that he was “only joking.”

He has started avoiding certain foods again, saying that they “taste funny” or that they’re “too sweet.” This includes foods that he normally consumes with great pleasure, such as granola bars, juice, peanut butter and jelly sandwich, and toast with honey.

He started making funny twisting movements with his body, often having to stop in the middle of doing something to bend over and hold a counter or something for balance. He juts his hip out to the side or wiggles his torso. When reading books to him, he twists his head and torso to the side or sometimes puts his ear to his shoulder in a rapid fashion as if a fly flew into his ear. He fidgets his fingers as though he’s typing something.

New vocal tics appeared, including a shouting tic (makes a brief shouting noise at random times throughout the day), and a change in volume mid-sentence. He also has been grimacing and putting his chin to his chest or tipping his head backwards, which can make his voice sound funny or distorted if he’s mid-sentence when it happens. He also talks occasionally in “baby talk” or gibberish, and sometimes loses his train of thought or appears to stutter slightly. His teachers have expressed concern that he is “losing his ability to speak” because they can only understand him part of the time. He received early intervention speech therapy from ages 2-4, but made such great progress that they stopped services around his 4th birthday (just before the first vocal tic appeared). His teachers recently asked if we should consider contacting the speech therapist for some “refresher” services, given the regressions they have observed in his speech.

He has been very tired and has dark circles under his eyes. His teachers note that he seems very tired at school, too. He is sometimes listless at home and asks over and over again “what can I do?” When I give suggestions for activities that he usually likes to do, he rejects them. He has been choosing activities that seem odd or destructive, such as sharpening crayons or pencils over and over again until they are little nubbins, mushing things into crumbs (e.g., food), scribbling roughly on a piece of paper instead of making a careful drawing (which he usually likes to do), and racing a truck back and forth across the floor and occasionally bashing it into other toys. These types of activities are occasionally part of his normal play, but right now they seem to be the only things he wants to do.

Perhaps most concerning of all are the changes in his mood. It feels like a different child has come and replaced our normally inquisitive, focused, and generally good-natured boy. He has had about 4-5 huge tantrums over the past several weeks that have usually resulted in Mom or Dad gently restraining him because he tries to hit or bite. He fights and claws until he wears himself out (sometimes lasting 30-45 minutes), and the tantrums often result in lots of crying. We try to talk to him about what’s going on, to reassure him that we want to help him, to ask him if his tics are hurting his body, to validate how he has a lot of “big feelings” right now and that’s okay. He doesn’t like to talk about any of this, but sometimes validating his feelings makes him cry harder. It’s hard to imagine how scared he must feel about all of these things happening to his body.

We went back to the pediatric neurologist last week and he listened to our concerns and watched the video clips we had taken. He did a basic neurological exam (reflexes, balance, etc.) and then proceeded to talk with us about Tourette Syndrome and OCD. It wasn’t a particularly helpful or illuminating visit except for the reassurance that there doesn’t appear to be an underlying life-threatening cause for these developments. We mentioned the possibility of PANDAS with the neurologist and received some pushback. Nonetheless, he made a note to our family doctor to do a strep culture but didn’t think a blood test was necessary.

The rapid strep test was yesterday and came back negative. If the longer-term results of the culture come back negative, our next plan is to get a blood test. We are also planning to test for Lyme. We have an appointment in March (earliest available) with a local naturopath who comes highly recommended by our local Lyme Disease support group (even if it’s not Lyme, we think she will be helpful for exploring other issues). Prior to this recent onset of tics, he had two bad colds, which we just assumed were your normal, run-of-the-mill winter colds with a runny nose, coughing, etc. so we didn’t go to the doctor and they seemingly cleared up on their own.

One last possibly relevant detail - when he was three, A’s doctor has noted that A’s tonsils are larger than average and we saw an ear/nose/throat specialist at the time. The specialist said that a tonsillectomy might be something to consider in later years so maybe it’s time to revisit that conversation?


Questions:

• How can we help our son? What are the next steps that we should take in trying to get to the bottom of what’s going on? And what types of low-invasive efforts we can try at home (e.g., epsom salt baths) to try to bring him some relief in the short-term?
• How do you help your young child feel reassured when something like this is happening? What language do you use to talk to him/her about what’s going on?
• Any other feedback or ideas are welcome. We are distressed and discouraged and looking for any help we can get.

***Thank you for taking the time to read this.***

[searching_for_help]

You mentioned an air filter in his room possibly helping. Any chance at all there might be mold in your house? Or at his school? We, and others on here, have had our kids react to mold. My daughter (dd) and I have the HLA genes where we don't detox molds and it makes us sick. I get more of the regular symptoms, but dd gets more of the psychiatric - more anxiety, OCD, etc. We react differently to different kinds of mold.

 

Mold is tricky because it can be in your walls from a leak and not always visibly seen. (Our worst place is behind a shower that leaked - I discovered black growth in the closet wall directly behind that shower. Ugh... it's awful.

 

But yes, Lyme, coinfections, strep, mycoplasma and on and on can affect our kids. Even food allergies and nutrient deficiencies, yeast in the gut. I'm sorry, because I know how overwhelming this can be and how our medical community isn't very helpful. Our dd had LOTS of strep as a kid, has probable Lyme and definitely Bartonella. We know her gut is a mess from all the antibiotics (abx) she had as a kid. Personally, I'm thinking all the antibiotics (destroys good gut bacteria) and Tylenol (wipes out your major antioxidant, glutathione), she had as a kid weakened her immune system (gut), and also Bartonella suppresses the immune system, plus throw in all her nasty gene snps that keep her from ridding her body of toxins from things like Lyme, mold, environmental toxins, etc, and you end up with this storm, this awful storm.

 

Our dd does not have tics, but it seems to me that many do well to get rid of gluten. (I'm sure others will chime in here.) I'd also look into treating yeast overgrowth in the gut. Also, it would save you time and years of if you just break down and find a PANDAS friendly doctor, even if it means driving a long way. Seriously, unless you're very lucky, you'll get no where with a regular doc and it's just not worth it. Our dd has lost over 10 years of her childhood to this horrible disorder, and she is now 23 and we are STILL not through it. But we spent years trying to find local docs to test and help us. They would send us to specialists that were no help. If there isn't a pill or procedure for it, they seem clueless.

 

Hopefully you will get some opinions from others. I know some of the top PANDAS docs want to go straight to IVIG or PEX. It's good to find someone who is willing to look for what exactly is going on, as the IVIG and PEX don't always work or last. I'm not saying not to do them if you have insurance coverage, but just be aware that if it is something else, you need to have a doc willing to look into it. I prefer a functional medicine doc, but that is my preference.

 

Once again, the air filter makes me think mold might be a contributing issue...

Good luck, I feel for your situation and hope you find help for you child soon. And major hugs to all the moms going through this.

[WorriedMom1]

Hi -

From my perspective, your son's symptoms are textbook PANS/PANDAS: tics, separation anxiety, OCD/repetitive tendencies, choreoform movements, difficulty sleeping, food aversions, mood swings. Even his urinary imcontinence is a PANS symptom - it signals a neurological problem.

 

Our daughter presented with the near exact same cluster of symptoms (minus the tics). Her strep tests were negative and all of her strep antibody tests were very low. They were so low, in fact, that the doctors say that there is every indication that my DD does not mount a typical antibody response to strep. Interestingly though, the major academic institution where my daughter is being treated, says that a number of their patients have no antibody response to strep (my DD's numbers are virtually at 0). Nonetheless, they diagnosed her as PANS based on other clues - elevated circulating immune complexes, anti histone antibodies and signs of an entrenched sinus infection. She has been treated with antibiotics and high dose steroids (the details of which I am happy to discuss off line) and had a phenomenal recovery (though there is still some residual OCD and a anxiety).

 

Which is a long way of saying, please do not rule out PANS just because your son doesn't register strep titers. I would find a PANS friendly doctor near you, and pursue diagnosis/treatment with him/her.

 

Good luck and keep us posted. Many of us have been where you are. We understand.

[ejh]

I agree with Worriedmom1 that what you describe are very typical PANDAS symptoms. My advice is also to find a PANDAS doctor asap. The sooner your son gets the right treatment the better. Where are you located? We see Dr Latimer in DC. She is very knowledgeable. Regarding how to talk to your child, I think it is important to tell him that it is not him, and he will get treatment from a good doctor and he will be fine. Other than that it probably depends on what he is concerned about. I think it is really important to find a PANDAS doctor and start treatment. In the mean time, ibuprofen can help some symptoms because it reduces brain inflammation.

[nicklemama]

Test for every thing. My son had classic PANDAS presentation but we never found him to have strep or be positive on blood tests for strep. Two years of treating for PANDAS brought him some relief but he was still struggling. Changed doctors, who tested him for Lyme and coinfections and there was our answer. Test for everything and don't limit yourself to a narrow focus on one infection. It will save you time, money and most importantly get your child well in a shorter period of time.

[browneyedgirl]

Thank you so much for your input and suggestions. Having people who are willing to "listen" to the whole story of what's going on and tell us that we are not alone is refreshing and so deeply appreciated. Thank you from the bottom of my heart.

 

In trying to outline some semblance of a plan amid all of this uncertainty, the points that jump out at me as next steps are: investigate possibility of mold in our house, find a PANS/PANDAS-friendly doctor, and advocate for a comprehensive panel of tests. I have seen elsewhere in these Forums a reference to the "Cunningham Panel" - is that the best starting point for testing?

 

Regarding a doctor, we are on a waiting list for Dr. Williams at MGH (but they said it would be "months and months") and have an appointment with a local naturopath in early March. We live in southern Maine and are open to traveling as needed, though I am curious to know if anyone has had success finding a doctor who is willing to do long-distance consultations?

 

Thank you, again, to all who read and comment, and lots of love and good wishes to those of you who are also going through something so upsetting right now.

Edited February 9, 2016 by browneyedgirl

[Wombat140]

Nicklemama - tested for them how, please? I'm wondering about this myself and know testing for Lyme and related diseases is a tricky one. If some test worked for you, I want to know!

Sorry to interrupt your thread, Browneyedgirl, but I suppose it's relevant information for you just as much as me. Good luck to you and your son.

[Cleopatra]

This child has PANDAS/PANS and you need a specialist more aggressive than Dr. Williams, IMO. Go see Dr. Beth O'Hara in CT.