Looking for advice In wisconsin

[April]

Hello everyone,

 

Where to begin. My husband and my 2 beautiful boys age 2 and 6 just returned from a fantastic, relaxing week in northern WI last thursday. The day we got home we noticed our 6 year old doing very strange things with his eyes. He was rolling them both side to side. We told him to stop and eventually realized he couldn't. We were extremely concerned something was wrong and we tool him to the ER at the American family childrens hospital. They did an eye exam and several tests for his strength, balance, etc and told us it seemed like a tic possibly from fatigue and to watch it over the weekend. Friday morning we took him to our pediatrician on the east side of Madison who did several of the same tests and feels confident it is a tic. He stated these are very common in kids age 5 to 8 and that they usually disappear within 2 to 3 months. Well it's only Sunday and my husband and I are having a hard time with this. I guess it hasn't sunk in yet that our little boy has changed seemingly overnight. He's still my sweet baby but it's just so hard to watch this thing with his eyes. He sometimes is looking straight ahead but wul, turn his head to roll both eyes to one side and then maybe the other side. Sometimes he doesn't move his head but just rolls his eyes to one side or the other. He says his tear ducts feel weird and the movement hes the feeling go away. He isn't having seizures, he says both eyes feel the same and this doesn't seem to bother him which is good. Can't say the same for mom and dad. We're a bit heartbroken although we know others are dealing with so many worse things in life. We don't want him to get picked on as he's very outgoing but also very sensitive. The doc said it is very common and not to worry. He said this is his second case this week and he had 5 last month. He seems confident it's just a temporary thing that will go away in 2 to 3 months. I'm hoping to get a bit more reassurance that that is what normally happens. Does anyone have any stats or experiences to share? He did say he hasn't seen this particular tic before - the eye rolling, but it's consistent with how tics work in that it comes on suddenly and the tics last for just a second or two and then are gone. He does it a lot all day. We have no family history. My husband has severe seasonal allergies and my son seemed to have them this spring so I just had him tested two weeks ago. His only allergy so far is to dogs and we do not have pets. I think we'd like to see a neurologist who specializes in this and would welcome any advice on local doctors. Could really use some support as no one in our families has experience with this so we feel very alone. We're praying it will just go way but we find ourselves continually evaluating whether it's getting worse or if we can identify any more tics, etc. The doc said it's possible to develop vocal tics or other motor tics as well and that it could turn into tourettes but it is very unlikely. I've been trying to read and research as much as I can and my head is spinning. Not sure what to believe.... Thanks in advance for any words of wisdom and God bless you all in your own journeys.

[Cj60]

Hi April!

 

Sorry to hear you're stressing, but I'm happy to say you're in the right place.

 

Lots of people on here with lots of help to offer!

 

While the eye roll isn't a tic I have seen in my son, others here have experience with it and will have advice, I'm sure.

 

An important thing to ask from the start is when the last time your son was sick with a strep infection. Tics can sometimes be infection-related, and when that's the case, the steps you take may differ from when they are not infection related. Infection related tics are known to start suddenly, as you seem to indicate. If you can pinpoint a recent infection, you should consult with the very knowlegeable people on the PANDAS/PITAND forum.

 

I've never associated infections with my son's tics, though it's very possible there may be some connection.

 

This is the quick advice I would give for someone who does not see an infection connection:

 

Consider that allergies (including food sensitivites) may have a role in your son's tics. To make sure you're getting the right information concerning testing for food and other types of allergies, look beyond your child's pediatrician. The standard route of 1) pediatrician 2) pediatric neurologist yeilded zero help for us. We found, through this website, an "alternative" environmental doctor who was able to help us consider things that our pedatrician had no clue about. (And I won't even mention the waste of time that was the trip the neurologist.) We had some specialized allergy testing through the alternative practice that yielded information regarding sensitivities (dairy was the biggest culprit in my son's diet). So, don't be afraid to seek non-traditional advice if the tic does not go away on its own, as they certainly have been known to do.

 

The treatment we have come to use to help our son with his "non-infection related" tic is: 1) diet (there's lots to read up on with regard to this, and you'll get great advice here), 2) a magnesium supplement and 3) a potent multivitamin.

 

Kids' dietary sensitivities vary greatly. One good starting point with regard to diet, though, is to eliminate all artificials and preservatives.

 

You can also look at foods your son eats a lot and consider those foods as a potential starting points for an elimination diet. You'll find lots of advice here on elimination diets.

 

The magnesium supplement we use, religiously, is called Natural Calm, and is in a powder form.

 

The multivitamin we use, equally as religiously, is called Kirkmans Spectrum Complete Powder. But you won't have to look far here to find other advice for multivitamins.

 

My advice would be to start both the magnesium and a good, potent multivitamin now, while you're reading up and getting advice from others about how to procede with your son.

 

Good luck!

 

Chris

Edited July 4, 2011 by Cj60

[rowingmom]

April:

 

I am inserting some content from one of my responses on the Lyme forum.

 

"I am living in the Niagara region of Ontario and we see a LLMD in Buffalo. My dd9 had a single circular rash in the fall of 09 and began ticcing shortly after that. She didn't develop any other symptoms that I associated with Lyme until Jan 2011 - muscle pain, bone pain, fatigue, night sweats, cyclical bowel issues etc. With a round of penicillin V in March 2011 for a strep infection all symptoms disappeared and the tics greatly resolved. Everything returned full force once the antibiotics were finished. Our family doctor wanted to treat with anti-anxiety and tic meds, the allergist wanted a full elimination diet, while the pediatrician is investigating autoimmune bowel disorders. The pediatric psychologist diagnosed PANDAS."

 

I spent 3 months undertaking elimination diets with DD9 - low salicylate (did help the ticcing somewhat) and low oxalate (did help the pain somewhat), but was not able to fully resolve her symptoms. We kept detailed diet and symptom charts, but the allergist could find no correlations.

 

My DD started ticcing in the fall of 2009, she had not had motor tics before that time. Other than the motor tics she showed no other clinical signs of either lyme or bartonella. When I saw the header for your post I thought I would mention what we have gone through to get a diagnosis. We went to see a LLMD in Buffalo and her Igenex test came back positive for bartonella and indeterminate for lyme. She is being treated with Abx for bartonella and some herbal preparations (banderol and samento) for lyme. The LLMD will treat the lyme more agressively if her future lyme tests seroconvert.

 

My understanding is that lyme can greatly alter and compromise the immune system, allowing infections that would not normally be a problem for a child to either overwhelm them, or cause them to improperly mount a proper immune response (i.e. they don't appear to be sick with an infection). It can also cause autoimmune reactions (PANDAS/PITANDS?).

 

I remember asking my DD why she was ticcing, and she gave me the same response as your son did to you, that there was a funny feeling and that it would only go away if she did the proper movement.

 

When I was researching DD's symptoms on the PANDAS forum, I found that more than a few parents had found lyme (or coinfections) to be the cause of their child's PANDAS/PITANDS reactions.

 

Keep up your research. The various forums on ACN are a wonderful resource.

 

Louise

Edited July 4, 2011 by rowingmom

[April]

Thanks Chris,

 

I can't think of a recent infection but my son did have his tonsils and adenoids removed last month and tubes put in his ears. Not because he was having infections but because he had fluid build up that would not go away and his adenoids and tonsils were enlarged. Could something like that possibly have initiated this?

[Cj60]

Thanks Chris,

 

I can't think of a recent infection but my son did have his tonsils and adenoids removed last month and tubes put in his ears. Not because he was having infections but because he had fluid build up that would not go away and his adenoids and tonsils were enlarged. Could something like that possibly have initiated this?

 

 

April, I'm nost sure, but it sounds to me like there could be some sort of infection involved if you're talking tonsils and ears. I'd run it by the PANDAS/PITAND forum; you'll most likely get a quick response.

 

Chris

[ameecram]

Hi April,

 

My son had many of the same issues as yours starting at age 3. His tics are very allergy related and after seeing many, many different doctors we now see a naturopath in Madison. After we tested allergies, we put him on a strict eliminiation diet as well as many supplements, he is virtually tic free. He also had the same type of eye rolling tic as you describe. I don't believe he has Tourettes, we definitely see the correlation between allergies (both food and seasonal) and his tics. So please let me know if you need anything since we live in the Madison area. I can recommend doctors and naturopaths for you as well. Thinking of you!

[April]

Hi April,

 

My son had many of the same issues as yours starting at age 3. His tics are very allergy related and after seeing many, many different doctors we now see a naturopath in Madison. After we tested allergies, we put him on a strict eliminiation diet as well as many supplements, he is virtually tic free. He also had the same type of eye rolling tic as you describe. I don't believe he has Tourettes, we definitely see the correlation between allergies (both food and seasonal) and his tics. So please let me know if you need anything since we live in the Madison area. I can recommend doctors and naturopaths for you as well. Thinking of you!

 

Thank you so much. I would love the name of your naturopath and any doctors youd suggest. We live very close to Madison and work there daily. We saw a pediatric neurologist on Tuesday and he agrees with the likely transient tic but has no suggestions other than chewing gum can help. He was really bad on Monday and today was very good.

[Cj60]

 

Thank you so much. I would love the name of your naturopath and any doctors youd suggest. We live very close to Madison and work there daily. We saw a pediatric neurologist on Tuesday and he agrees with the likely transient tic but has no suggestions other than chewing gum can help. He was really bad on Monday and today was very good.

 

 

Be careful with the gum! Most are filled with lots of ingredients that can trigger tics in our son. He's not allowed to eat it : )

[ameecram]

April,

 

I will send you a pm with doctors ok!!

[BoyIowa]

We are looking at heading to Madison area for a second opinion for our son - Lyme and PANDAS. Our biggest complaint is Tics. Can you PM me the list too? Thanks!!

[Cyndi]

Hi April,

 

My son had many of the same issues as yours starting at age 3. His tics are very allergy related and after seeing many, many different doctors we now see a naturopath in Madison. After we tested allergies, we put him on a strict eliminiation diet as well as many supplements, he is virtually tic free. He also had the same type of eye rolling tic as you describe. I don't believe he has Tourettes, we definitely see the correlation between allergies (both food and seasonal) and his tics. So please let me know if you need anything since we live in the Madison area. I can recommend doctors and naturopaths for you as well. Thinking of you!

 

Thank you so much. I would love the name of your naturopath and any doctors youd suggest. We live very close to Madison and work there daily. We saw a pediatric neurologist on Tuesday and he agrees with the likely transient tic but has no suggestions other than chewing gum can help. He was really bad on Monday and today was very good.

I, too, would love the name of your naturopath and Doctors!

Edited November 4, 2011 by Cyndi

[ameecram]

I pm'd you both, hope you got it!

[Momto2]

I pm'd you both, hope you got it!

 

 

When you get a chance, could you also send me the info. please? We live between Madison and Milwaukee.

 

Thanks!

[mscanley]

I live in Milwaukee and am dealing with sudden tics in my daughter. Any advise on doctors in the area? Need to call first thing monday morning. Her symptoms started faintly when she was 2.5 then slowly went away. Sudden severe on-set Wednesday of this week out of no where. It's been constant now for four days.