Tics at 2 years old

[lpmag]

New to group.

 

Need help. My 2 year old daughter woke up from ear tube surgery(second set after continued infections) with eye blinking. It was quick and rare. Two weeks later she started facial grimacing with the eye blinking. What was quick and rare quickly became legnthy and often. It ocured for hours at a time. Our pediatrician originally thought sezuires. An EEG was ordered. It showed now seisure activity. However, it was noted that she was doing it while asleep. After 2 subsequent EEG's no seisure and a diagnosis of Steriotypies. It has progressed to as much as 12 staight hours and has moved to other areas. She is spitting, sticking out her tounge, shrugging her shoulders, twisting fingers..etc. In addition, she has language and learning delays. It has been suggested that she has sensory intergration(needs to be stimulated) and verbal apraxia. I am allegedly at a top notch hospital however I would not agree in this area. I saw some information about PANDAS. I am asking for any and all suggestions, advise and experienes I can learn from. It has been suggested to use guafinex cough syrup? Anyone use this? She has been food allergy tested and tested for metals..negative. We are scheduled for MRI. Looking for best Movement Disorer Hospital, tests, treatments age appropriate, suggestions or what ever I can research.

Thanks to all who respond.

Lisa

[kim]

Lisa,

 

I'm so sorry to hear of the problems that your daughter is having.

 

I'm wondering if the bacteria that is causing the ear infections has been identified? Also, has she had positive strep cultures?

 

Could you say how the heavy metals testing was done?

 

If your baby has been on a lot of antibiotics, has she showed any signs of thrush, or evidence of digestive issues?

[P_Mom]

Lisa,

I would highly suggest (being symptoms came on suddenly and dramatically, and the recurrent ear infections), that you get blood work done and check titers for ASO titer, antiDNAase B titer, Mycoplasma, and Epstein Barr. If any of the levels are elevated, it would be very likely that this is the cause of these tics and behaviors. Antibiotics should dramatically lessen these if this is the case. (there are also other treatments if antibiotics don't work.) It can't hurt to get these tests done, atleast if you do you can know what you are dealing with. (pandas or Pitands) Then, you can go from there. Get the tests done ASAP while she is symptomatic, because if you wait too long, the titers can become normal and you can miss the diagnosis.

check out www.webpediatrics.com, click on PANDAS/PITANDS.

Kelly

[lpmag]

I am very greatful to all of your suggestion. I am waiting for a call back to confirm if we have or have not had these tests run. I am anxious to see if we have or have not done these tests. As you may well know it is very difficult to watch her go through this. She is eye blinking, facial grimacing, spitting, raspberries, shoulder shrugging, turning her leg, moving her fingers, arm flapping....sometimes these things occur for a long time. I am very sad and hope that a diagnosis will help make it better if not go away. The doctors told me there is no medication for stereotyies at this age and I should contact them if it gets worse? I don't even know if it can get worse. In addition, she is having moments of non-responsiveness. She was given an ABR on top of the three EEG's. Just like the EEG's, the ABR was normal. I do not even know how this can be. We can bang a pot and she does not flinch. She sat in the audio booth at the ENT with no respnse to sound. Yet, if you talk to her she understands. We know she is hearing but how does she not respond or flinch. I think she is so busy in her tics. She has been in EI for a year since it was assumed she could not hear and er head size. She is still severely delayed both in speech and learning. Her head is in the 5th percentile and just got onto the chart. The doctors and I seem to be on different pages. They think I need to accept everything as is. I think there is a reason for it all and I want to know what it is. I accept it but want to know why. I am so happy to be on this board and very greatful for your replys. I will be on this all day today.

Lisa

[Caryn]

I would suggest you get her tested for gluten intolerance and milk allergy. The developmental delays, apraxia.... constant ear infections, etc...

Surgery is traumatic at any age and would put added stress on the body. Pandas is a clinical dx, and before you go down that route do take a look at whether or not she has a food allergy/intolerance that is causing chronic illness and neurological dysfunction (gluten is a prime suspect).

We found this to be true for our ds.

He is now healthy and happy and no longer needs routine antibiotics for chronic re-occurring ear infections, etc.... We did look into PANDAS quite a while ago when all this had first begun.

Caryn

[lpmag]

Caryn,

Thanks. We had her tested a long time ago for many food allergies. She was negative for everything. Milk, wheat and gluetin were some of those tested. We have someone in our family with that issue and I had hoped that was our issue. Unfortunaely it was not. I spoke to my ped. doctor today. She said the PANDAS was a debatable concept and she was not sure this was the road she wanted to go down. This as my daughters Tics were present. I ran all the information I have seen on this board and she seemed to feel it was all debatable. I need a neurologist who will help me figure out why this onset was so quick and why she has developed so many which last for hours. I need a doctor willing to think outside the box. My neuro said she was concerned but schduled an MRI for almost May? Words and actions do not add up for me. I am certain that there is something and I am aware it is possibly something simple, now I just need a doctor willing to hear all of your experiences and help me r/o what it is not and help me make these episodes less or disappear and I'd love an explaiation. I am sure her surgery was stressful but it was her second time and she did bettter than I thought she would. I am still wondering if the ENT went too far causing some complication. Still frustrated but again thankful.

Lisa

[faith]

lpmag,

you mention repeated "infections" from a previous set of tubes? I understand that infection is one of the complications of ear tube surgery. Maybe you could find out more about how the infection is from and what it affects, for I wonder if an infection such as that could cause these symptoms in much of the same way the PANDAS does? ..... Are all her symptoms only after this second surgery? ... did she receive any vaccine right prior to that time, and if so, do you know what they were?

 

Also, and this might be way out there, but I have read that although rare, there could be an allergy to the material used in the tubing - have the doctors discussed that possibility? Is removal of the tubes an option? Is your daugher on any medication at this time? Also, I am wondering about the anesthesia....

 

Faith

[Caryn]

yes,

and I thought about this last night after I had posted---

Did she receive an IV with the surgery?

As Faith and I know all too well-- corn is an insidious tic trigger. IVs are made primarily from corn byproducts.

I am a regular consumer of corn allergy information sites as it has been necessary to keep our son tic free or majorly tic reduced. He started symptoms at 3 1/2 and they had an onset like what you have described. (Only we did not have a major surgery to provoke them.)

On that note, many corn allergic people have claimed that IVs are extremely dangerous and detrimental to them.

for example, on Ephraim Vishniac's website, http://www.vishniac.com/ephraim/corn-bother.html he writes:

dextrose (glucose), fructose

Dextrose (also known as glucose or "corn sugar") and fructose ("fruit sugar") are simple sugars that are often made from corn. Dextrose is used in a variety of foods, including cookies, ice cream and sports drinks such as Gatorade. It also shows up in prepared foods that are supposed to come out crispy, such as french fries, fish sticks, and potato puffs. It's common in intravenous solutions, which could be quite dangerous. Fructose is usually seen in the form of high fructose corn syrup, but makes an occasional appearance on its own.

 

Just a thought. I don't want to overwhelm you with too much information. As Faith will agree, I'm sure, corn has an insidious way of reeking havoc especially if it is ingested at very high doses. A RAST test will not necessarily show a corn intolerance. Both Faith and I had an IgG test done. Our pediatrician told us that he did not believe in such tests, but for us that test was the one thing that helped us to get a grip on things. I would have never figured out the corn allergy any other way as it is in so many processed foods and just about all hygiene products. Rashes on the bum and ezcema are signs of allergy.

Just my two cents. Hope it is worth something to you as you try to sort through all this.

[samsmom]

Lisa

I highly recommend that you find a good naturopathic doctor in your area. They are much more open to the kinds of treatments that our kids need. I don't really have any connection with Sam's neurologist or pediatrician, other than at visits for annual reviews, as they really have nothing to offer in the way of help. We have a wonderful naturopath here who is totally in tune with the kinds of tests and treatments that we want to pursue. Look some people up in the phone book, ask around for recommendations and, most importantly, call to talk to them before making an appointment. Ask them how they would deal with a child with the symptoms that you have described and their answer will tell you if they are the right person for you or not. As much as this forum is a huge help, we all really need that one qualified doctor who can help us out with the tests and treatments that we know our kids need. Finding the right person to share the work will also take a huge weight off your shoulders.

 

Good luck

Sams mom

[lpmag]

Today I contacted a holistic health professional. They are at a wellness center. He is a chiropractor and works with a bunch of other specialists who believe in holistic natural health. I am hoping to get a referral from my ped. as I need one with our insurance, Unfortunately he takes my insurance but alot of their services are out of pocket. I also understand that alot of the supplements are out of pocket too. I am hoping it is all reasonable so we can continue if we feel comfortable.

As far as the allergy to corn, I will check it immediately since my daughter has severe excema on her face, legs, arms and bottom. We only did the testing on the arms. I am guessing the IgG test is a blood test? I will absolutely look into it. As far as the tubes, I would imagine if she had an allergy she would have had a reaction to the first set. I called the ENT, I have special words for his response but I am certain they are inappropriate for this forum. His basic response was a cover yourself for law suit..They surgery went fine and nothing he did would have caused this reaction. I am done with him. I can say that every doctor we have seen thought it was unlikely the surgery caused this event. I disagree but only really care how to end the episodes. I am having great difficulty with my physicians allowing me an opportunity to explore the suggestions you have made. I am hoping to meet with this wellness center and get on the road to less frequent episodes. One last question..he talked about biochemical testing. Something about the hand and finding out about the chemicals in the body and how well they are working togehter. It is an out of pocket expense and would love to hear anyones experience and suggestions to go forward or forget it.

I can not put into words how much better I feel hearing from you and knowing I have other areas to investigate.

Thank you.

Lisa M