New here with questions! Would love insight!

[kdnc5716]

Hi, everyone! I'm new here with questions for you all. I would love any advice or information you might have for me.

 

My son is 4.5, and I think we are heading toward a Tourette diagnosis with him. I don't know of any Tourette Syndrome in my family, although I do have generalized anxiety disorder and developed OCD symptoms when pregnant with him.

 

My son is kind of a strange case, I think. He developed eye rolling several times a day at around 11 months, when he had his first ear infection and cold. He was given a EEG, which came back clear, no seizure activity. The eye rolling went away after a couple weeks, but it came back in spurts every few months. From what, I've read, it seems like this is too early to develop tics? Or not? Anyway, this symptom pretty much went away about a year ago, although it's possible he just masks it now while rubbing his eyes. I don't know? (He was also referred to a pediatric opthalmalogist, who said his vision and eyes were fine, and that it was probably just allergies.) Anyway, I don't know if all this is connected, but I wanted to give you the back story in case it is important.

 

Anyway, about six months ago, I started to notice what I thought were tics in my son. He kind of scrunched up his face on one side, and it looked kind of like a mannerism, like he was thinking. It's very noticeable to me now, and he'll actually scrunch up one side of his face, and then the other, and then the other one again, many times throughout the day. It's worse when he's stressed, sick, or tired. His behavior seems to get worse at these times, too. He's more tired during the day, and he sometimes angry outbursts when he lashes out at us. He also has more accidents during these "waxing" periods, too, poop accidents during the day and wetting through at night.

 

I went to our pediatrician without my son a couple months ago to discuss my concerns about his tics. (I didn't want to take him, because I don't want him to be self-conscious about these tics. I never have pointed them out to him. Is this okay or should I talk to him about this?) Anyway, she said that his face scrunching sounded like a tic to her, and just to watch him for vocal tics. (I also asked her about the possibility of PANDAS, and she seemed well-informed on this diagnosis, and she said she didn't think it was in his case?)

 

Well, over the course of the summer, our son has started to have what I think might be vocal tics. They switch up more than his scrunching, though. He's done this humming thing for a couple days, and a tongue clicking thing, and now, most recently, this almost-kissing type sound. He'll intersperse his speech with it. (Our little guy has articulation problems, by the way, as well, and has seen a speech therapist for over a year.)

 

Finally, I'd like to mention that our son has anxiety problems as well. He gets really nervous during some TV shows or books (and I mean, things like Dora not Transformers!) and comes up with creative things to worry about in his own head, too. He starts biting on his shirt collar or ticcing when he gets nervous.

 

Oh, and one other thing: First, my pedi has always referred to him as an "allergy kid." Eczema, and now reactive airway disease. Also, his skin breaks out when it comes in contact to grass and various foods, such as ranch dressing, cinnamon, ketchup, etc. His stools have never ever been fully solid. Hopefully this isn't too much information, but they are usually formed but still loose/weird looking. He has never been allergy tested, but I wonder if food or other allergies could be making his problems worse. Should we have him tested or do an elimination diet of some sort?

 

My questions for you all: Does it sound like we are headed toward Tourette? I know you can't diagnose him, but this "watch and wait" game is killing me. I'd love to have insight from people who know what this syndrome is like first-hand. Also, if this IS Tourette syndrome, does it mean that his case is going to be more severe since he is starting on the younger side? Is there some correlation there? Finally, if this was your child, how would you approach this? I mean, I don't really just want to wait until he reaches that one year of symptoms milestone before I do anything, you know? I feel like I should be doing something.

 

Thank you all for listening, if you made it this far. I know this is really long and disjointed. I've never shared this with anyone before (besides our pediatrician). I would really appreciate any information/advice/support you have for me. My boy is so sweet, special, smart, and kind. I want to do everything I can for him to help him.

[Ozimum]

Hi and welcome,

 

I just had to respond...my son does not have Tourettes but he does have PANDAS and a few bells went off as I read your post. He also has leaky gut/gut dysbiosis. I suggest you have a look at the useful threads right at the top of the PANDAS page of this forum - you will find there a pretty comprehensive list of possible PANDAS symptoms. Plenty of PANDAS kids also have gut issues and it may well be a good idea to have it checked out. Personally I favour seeing a good DAN/Biomed doctor - they are more likely to really "get" gut issues. Gut issues can also be linked to allergies and immune issues.

I'm a little cynical as to how "informed" your ped is on PANDAS...I'm sure it happens, but it seems to be rare! Trust your gut on this and delve deeper before dismissing it. Good luck!

[Chemar]

Hi

where it may be possible that this is symptomatic of PANDAS , I do also want to point out that we have many examples of kids who have started ticcing because of allergies, or other triggers and who do not necessarily also have PANDAS/PITAND or Tourette Syndrome.

 

Many conventional doctors do tend to automatically equate tics with TS, but we know from the many reports here that there are a wide range of factors that can cause childhood tics, as well as the other symptoms you mention.

 

Do take a look at the helpful threads list here

http://www.latitudes...?showtopic=2459

 

and here is info on an excellent book on natural ways to treat tics, that also covers allergies etc

http://www.latitudes.org/book.html

 

An interesting article on potential tic triggers

http://www.latitudes...ng_triggers.htm

 

our PANDAS/PITAND forum

http://www.latitudes...hp?showforum=17

 

info about PANDAS

http://www.pandasnetwork.org

and

http://www.PANDASresourcenetwork.org

[kdnc5716]

Hi and welcome,

 

I just had to respond...my son does not have Tourettes but he does have PANDAS and a few bells went off as I read your post. He also has leaky gut/gut dysbiosis. I suggest you have a look at the useful threads right at the top of the PANDAS page of this forum - you will find there a pretty comprehensive list of possible PANDAS symptoms. Plenty of PANDAS kids also have gut issues and it may well be a good idea to have it checked out. Personally I favour seeing a good DAN/Biomed doctor - they are more likely to really "get" gut issues. Gut issues can also be linked to allergies and immune issues.

I'm a little cynical as to how "informed" your ped is on PANDAS...I'm sure it happens, but it seems to be rare! Trust your gut on this and delve deeper before dismissing it. Good luck!

 

Thank you for the response, Ozimum! I will look at the PANDAS threads in this forum. I definitely haven't ruled out PANDAS yet. I don't think our pediatrician is an expert on PANDAS, but she acknowledged it as a valid diagnosis, gave me information about it that aligned with what I had read online, and mentioned that she attended a lecture about it at a medical conference. I guess I was impressed about how much she knew, based on what I had read online about doctors being dismissive about it. I think if we decided to explore the possibility of PANDAS further though, I'd have to find someone else, like you mentioned.

 

I really appreciate you taking the time to respond to my post. I am definitely interested in trying to help my son's stomach/digestive issues to see if that helps him feel any better, too. I'm curious about what I've read on GFCF, especially. I do think it is possible that he is sensitive to gluten and/or casein.

[kdnc5716]

Chemar, thank you for the list of links! I will take a look at those over the next couple days. Hopefully those will give me a jumping off point for approaching this. I just feel like there is so much info out there and so many decisions to make about how to proceed that it is overwhelming at times. I appreciate the assistance!

[momaine]

A couple of things stood out in your post. (Mind you, I'm coming from finally figuring out my daughter with OCD/tics has PANDAS or PITAND and Chronic Lyme Disease)

 

The fact that you developed anxiety/OCD when you were pregnant with him and he has issues that sound very PANDAS/PITAND like, make me suspicious of Lyme. It is possible that you contracted Lyme and one of the co-infections (Bartonella causes anxiety and OCD)while you were pregnant and that you gave it to him in utero.

 

If I could give you one piece of advice, it would be to see a Lyme Literate doctor recommeneded by ILADS.org and at least rule it out. Might save you years of pain and worry. It is important to see a doctor who understands lyme and the coinfections and not a regular pediatrician or family doc.

 

best of luck

[kdnc5716]

A couple of things stood out in your post. (Mind you, I'm coming from finally figuring out my daughter with OCD/tics has PANDAS or PITAND and Chronic Lyme Disease)

 

The fact that you developed anxiety/OCD when you were pregnant with him and he has issues that sound very PANDAS/PITAND like, make me suspicious of Lyme. It is possible that you contracted Lyme and one of the co-infections (Bartonella causes anxiety and OCD)while you were pregnant and that you gave it to him in utero.

 

If I could give you one piece of advice, it would be to see a Lyme Literate doctor recommeneded by ILADS.org and at least rule it out. Might save you years of pain and worry. It is important to see a doctor who understands lyme and the coinfections and not a regular pediatrician or family doc.

 

best of luck

 

Thank you for the advice! It sounds like I should have posted this on the PANDAS board? This definitely gives me a lot to think about. It's interesting b/c I've sometimes wondered whether I have chronic Lyme disease myself. Many of my summers growing were spent in rural Wisconsin, and on one occasion as an adult I removed a deer tick from my calf (never had a bullseye rash or other symptoms, but I know that doesn't mean anything necessarily). In college, I also had a terrible "mono" shortly after a summer vacation, but I've since wondered whether that was Lyme, too. (Ever since, I have suffered from migraines, unexplained muscle pain, some tingling in extremities, fatigue, etc.) Hypothetically speaking, if I do have untreated chronic Lyme disease, would that have affected my son in utero?

Edited July 16, 2011 by kdnc5716

[Chemar]

Hi kdnc

 

you can copy and repost on the other forums here too

 

here is our Lyme board as well http://www.latitudes.org/forums/index.php?showforum=19

 

Just remember that there may be no single cause but possibly a combination of factors so keep looking into everything that seems reasonable

[momaine]

A couple of things stood out in your post. (Mind you, I'm coming from finally figuring out my daughter with OCD/tics has PANDAS or PITAND and Chronic Lyme Disease)

 

The fact that you developed anxiety/OCD when you were pregnant with him and he has issues that sound very PANDAS/PITAND like, make me suspicious of Lyme. It is possible that you contracted Lyme and one of the co-infections (Bartonella causes anxiety and OCD)while you were pregnant and that you gave it to him in utero.

 

If I could give you one piece of advice, it would be to see a Lyme Literate doctor recommeneded by ILADS.org and at least rule it out. Might save you years of pain and worry. It is important to see a doctor who understands lyme and the coinfections and not a regular pediatrician or family doc.

 

best of luck

 

Thank you for the advice! It sounds like I should have posted this on the PANDAS board? This definitely gives me a lot to think about. It's interesting b/c I've sometimes wondered whether I have chronic Lyme disease myself. Many of my summers growing were spent in rural Wisconsin, and on one occasion as an adult I removed a deer tick from my calf (never had a bullseye rash or other symptoms, but I know that doesn't mean anything necessarily). In college, I also had a terrible "mono" shortly after a summer vacation, but I've since wondered whether that was Lyme, too. (Ever since, I have suffered from migraines, unexplained muscle pain, some tingling in extremities, fatigue, etc.) Hypothetically speaking, if I do have untreated chronic Lyme disease, would that have affected my son in utero?

Lyme can be transmitted from mother to child in utero, yes. A good place to start learning about Lyme is in Pamela Weintraub's book, "Cure Unknown, Inside the Lyme Epidemic." Great read! Ilads.org is a great place to start on-line.

[laurena82]

Hi KD--

 

((((hugs))))) to you!

 

I saw your post, and :

 

(Our little guy has articulation problems, by the way, as well, and has seen a speech therapist for over a year.)

grabbed my eye---

 

I'm not sure what type of problems these are, but I went and dug up an old post of mine for you (re: stuttering at TS).

 

 

 

My son's speech problems showed up as blocks primarily when he would start a word or sentence.

 

 

Not sure if similar to yours at all, but my (frustrating) experience was that the speech therapist wanted to "blame" the speech problem onto the TS, as being *nothing* she could do about the TS---I should put him on meds----and, as a result, he went 4-5 years with severe speech problems, til I took him to a different speech therapist---and he learned some techniques that actually helped him become fluent.

 

He's 26 yo now, and has been completely fluent since a year or so after he started with that other therapist.........

 

((((more hugs!)))) and best wishes!!

 

(A FWIW story for you, anyhow.......)

[Familyof5]

A couple of things stood out in your post. (Mind you, I'm coming from finally figuring out my daughter with OCD/tics has PANDAS or PITAND and Chronic Lyme Disease)

 

The fact that you developed anxiety/OCD when you were pregnant with him and he has issues that sound very PANDAS/PITAND like, make me suspicious of Lyme. It is possible that you contracted Lyme and one of the co-infections (Bartonella causes anxiety and OCD)while you were pregnant and that you gave it to him in utero.

 

If I could give you one piece of advice, it would be to see a Lyme Literate doctor recommeneded by ILADS.org and at least rule it out. Might save you years of pain and worry. It is important to see a doctor who understands lyme and the coinfections and not a regular pediatrician or family doc.

 

best of luck

 

Thank you for the advice! It sounds like I should have posted this on the PANDAS board? This definitely gives me a lot to think about. It's interesting b/c I've sometimes wondered whether I have chronic Lyme disease myself. Many of my summers growing were spent in rural Wisconsin, and on one occasion as an adult I removed a deer tick from my calf (never had a bullseye rash or other symptoms, but I know that doesn't mean anything necessarily). In college, I also had a terrible "mono" shortly after a summer vacation, but I've since wondered whether that was Lyme, too. (Ever since, I have suffered from migraines, unexplained muscle pain, some tingling in extremities, fatigue, etc.) Hypothetically speaking, if I do have untreated chronic Lyme disease, would that have affected my son in utero?

 

Another cause could be toxic mold. If more than one member of the family is chronically ill, look at the environment you are living in. It may be possible to transfer lyme to your child in utero, but it may also be likely that mold in your enviroment is toxic and is the cause of your symtpoms. Toxic mold caused me to have numbness and tingling in my extremeties, migrane headaches, fatigue, muscle weakness, irratable bowels, dizziness, and on and on. Toxic mold also caused my children to all have motor and vocal tics, neurological disfunction, OCD, ADHD, gluten sensitivity, frequent urination, and on and on. Just mention so that you are sure to rule it out. There are a few active families here that are going down the mold path and finding success in treatment....if interested, check out this website:

 

www.survivingmold.com

[kdnc5716]

Hi KD--

 

((((hugs))))) to you!

 

I saw your post, and :

 

(Our little guy has articulation problems, by the way, as well, and has seen a speech therapist for over a year.)

grabbed my eye---

 

I'm not sure what type of problems these are, but I went and dug up an old post of mine for you (re: stuttering at TS).

 

 

 

My son's speech problems showed up as blocks primarily when he would start a word or sentence.

 

 

Not sure if similar to yours at all, but my (frustrating) experience was that the speech therapist wanted to "blame" the speech problem onto the TS, as being *nothing* she could do about the TS---I should put him on meds----and, as a result, he went 4-5 years with severe speech problems, til I took him to a different speech therapist---and he learned some techniques that actually helped him become fluent.

 

He's 26 yo now, and has been completely fluent since a year or so after he started with that other therapist.........

 

((((more hugs!)))) and best wishes!!

 

(A FWIW story for you, anyhow.......)

 

 

Thank you for the information, Laurena! That is interesting. My son was initially in speech for just articulation problems, such as not being able to pronounce "f," "s," a bunch of other sounds, consonant blends, etc. He's gotten better, but he's still in about the 25th percentile for articulation. He has since developed some problems starting sentences/words as well. For example, he'll start a sentence and say stuff like "I...I...I, I don't, I don't, I...I don't like broccoli." It's not something he does all the time, but my husband and I definitely have noticed it. We actually have a speech appt tomorrow afternoon, so I'll ask about it then.

 

I hope you and your son are doing well!

[kdnc5716]

Familyof5, thank you for giving me another possibility to explore. Many of your symptoms sound all too familiar. I appreciate the suggestions and support! I hope you all are doing better!

[Familyof5]

Treatment for mold can less expensive, and less burdensome on the body....it may be worthwhile to go down that path first. Treatment involves a toxin binder ($10/month copany), MARCONS testing and treatment if positive (shorter term anitbiotic treatment than lyme and BEG spray), and it also will only be successful if you find the mold and remove it. Buy an ERMI (environmental relative moldiness index) test kit and measure for mold levels in your home. If high, search and eradicate the mold --- get out of house while it is being remediated. Thanks for your reply. All the members of my family are doing so much better. Good luck.

[laurena82]

"I...I...I, I don't, I don't, I...I don't like broccoli."

 

That is exactly how it was with my son.

 

 

"Hey...hey.......hey mom,.... hey mom...hey mom....hey mom I.....hey mom I went outside and did this, that and the other thing etc etc etc (completely fluent..)......".

 

 

Also,...when he was really excited....he would have complete blocks, ..where he couldnt get ANY sound out at first.

 

 

 

 

The technic they taught him that actually worked had him deliberately saying the first words VERRRRYYYYYYYYYY slowly and dragged out....and I think even starting with saying the first PART of the word even slower.................and then as the sentence went on, he could pick up the pace.

 

But the first few weeks of this therapy he was only saying one word at a time he read VERY slowly and drug out......then I think it progressed to two...then a phrase....a sentence.....

 

 

He was about 9 or 10 at the time.