New here, and saying hello

[Calicat]

Hi all,

I've been working my way through reading pretty much EVERY post here on this board, and I'm on page six now. Thought it was time to jump in and say hello!

 

I live in Ontario, Canada, and I have a 5 1/2 year old daughter who has been having tics for the past four weeks. This also happened last year during the springtime (although I think a bit earlier), except it is worse this time. Last spring she had a throat-clearing tic only, which varied but could occur multiple times a minute. This time she has the throat thing, sometimes followed by a sniff, or a sniff-sniff-sniff, as well as a bit of eye-blinking and teeth grinding occasionally during the day and night. Once in a while she does that "trying to get a deep enough breath" thing, but infrequently. Oh, and her tonsils look reddish, swollen, and "veiny".

 

All of this has been fluctuating in severity over this month, with hours going by with only a couple tics or none at all, especially if we are playing outside. But then sometimes it can be 10 or 20 times a minute, or a lot more if you count the individual sniffs.

 

My daughter is a very kind, smart, and talented girl! She loves (as I do) learning about and keeping bugs like caterpillars and snails (we have 3 cocoons and a chrysalis right now). She sings all the time, and knows many hundreds of songs, sings very well, and likes to practice learning harmony along with me when we are singing. She's good at art, and running. She loves cats, and all other animals, too. She has always been very verbal, and has a super vocabulary. Just thought I should mention that stuff too, so she doesn't appear to be a list of "symptoms".

 

I've done my crying, and now I'm moving on to action. Last year I figured out it was probably a tic, but then it went away and I didn't think much about it. Now I'm convinced it's tics. None of her four grandparents get it at all: "Here honey, have a throat drop." or "Do you think if she just blew her nose really well..." or "Maybe a Claritin or Sudafed would just clear this up." It is very difficult to explain that even though I suspect this is at least partly caused/triggered by allergies, it is causing a neurological effect, not a traditional allergy.

 

In the past few days I've started an additive-free multivitamin, a liquid magnesium supp, an Epsom bath this morning (which seemed to take away the tics while she was in it) and will be starting a house-makeover, as I strongly suspect indoor allergies for both of us (mine are "traditional" allergies... mostly sneezing). Also will start digestive enzymes, and have placed a call to the local environmental/allergy doctor and chiropractor. I feel better doing steps rather than waiting to see.

 

When I look back on it, I see traces of minor (I think) OCD in both my family and her father. Her dad has these little things, like he can't stand to have stuff (any kind of goop) on his hands, and he wet the bed until nearly 12. My daughter also has very little bladder control at night, although she was day-trained by 2 1/2. My sister once picked a bald patch in her hair, but stopped after a while. My mother has gone through stages as an adult of picking little places on her skin until she's covered in little red irritated spots that look like acne all over her arms or tummy or face. My other sister used to count stairs and wanted to end up on her right foot on the last stair, but she says she forced her mind to stop doing that. I had the deep breath thing occasionally as a kid, and was driven nuts by this little callous thing on my foot, and I would get out of bed at night for a couple of weeks just to try to cut it completely away with a nail clipper. So, I can see there maybe being some genetic something-or-other going on here.

 

Anyway, that's my story, and I hope to get to know you all better in the coming weeks and months as we battle this out. If anyone notices any similarities with their own story or has suggestions, please let me know!

 

Calicat

[John]

Welcome to the Foirum Calicat.

 

Seems like youve done your homework and have started the ball rolling.

 

Like I always say, mostly its worse for the parents then it is for the kids. Be strong for her and dont let it dominate you and your familys life.

[Chemar]

welcome Calicat

Good for you for being pro-active in researching what is available to help your child to better health

 

we look forward to your participation here

[Cum Passus]

Hi Calicat,

 

I'm glad you joined, and you sound like you have pulled yourself together quickly. THATS GREAT!!

 

Your daughter sounds like a great girl who will have no problems with tics, (just one more thing for her to master )

 

I love the way God shows us all the blessings in our kids, it makes the hard times seem not that big of a deal.

 

I'm so glad you have a good idea about the genetics, ( I just noticed genetic is spelled gene + tic)

 

I'm sure if you have read through page 6 you have come across DIET DIET DIET !!!

 

Good luck we hope to hear more about how your daughter is doing in the next few months.

 

C.P.

[kkver]

Welcome to Latitudes. You have gone through 6 pages so must have picked up lot of information. One thing concerns me in your Post is

 

and her tonsils look reddish, swollen, and "veiny".

 

did you check it for any strep infection and how big they are getting ( are they caueing any breathing issues while sleeping like similar to sleep apenia ) . Did she had any infection last spring post or pre to those Tics.

[lmcgill]

This forum will help, I am from the other side of the country, Vancouver BC and our son is 8 and has many similarities. He is very bright, does not have any othe co-existing problems such as any attention def. or OCD and no TS or any other major behavorial issues. Nor is there any known history of anything on both sides of our family. I have done most of the diagnosing and discovery myself. The GP and PED brushed me off, the Naturapath charged me $400 to get a IgG test done for food intolerances. He did have the prick test done but that showed nothing. As you can see from my previous post, he is off the charts for eggs and soy. These are two foods that we have given him a lot of. We are going to eliminate or reduce them and see if that helps even more. I would definately put your daughter on "Kids Calm". It seems to have helped our son out. I also have him taking a high potency B-Complex and Taurine and L-Carnitine. The combo has reduced his tics down to only mild to moderate sessions maybe once a month for a couple days if that. I am hoping the diet does the rest, but I know I can never take credit myself. I have let my trust in God suffer some days, I have shed a lot of tears and obsessed over him. I am getting better, but still a ways to go for myself and my son. My wife seems to be the balance in this situation, although concerned, she feels like I do the worrying for both of us. Please be patient, I can only hope no one falls into the helpless condition I felt I was in. It did my son, my family and myself absolutely no good. Kids pick up on your concerns, and it makes the situation worse. I am preaching to myself as well right now, it helps to write things out and remind yourself the damage you can do when you appear distressed and sad in front of people you love.

Although I feel fortunate to not have a son that has to go through the situations others are faced with on this forum, it still can be as devasting and I will never "brush" my son off. I am going to do anything to help him and allow him to have as normal of a life as possible. I would feel I had failed if I didn't turn over every stone. Like many have said, it is a journey.

Lenny

[faith]

Hello Calicat and welcome.

 

I love what you wrote about your daughter. Those are the blessings I try to hold onto when I'm feeling frightened about this tic thing. I think we suffer so much as parents with all this, because we are afraid that all that they are will be overlooked because of the tics. Well, that is our fear, anyway. Thanks for reminding us that our kids are WAY more than that.

 

My son is great at art and loves animals and cats too! (Very verbal too, but sometimes I wish he would shut up! ) We recently found a little bird who must have fell out of a nest and we tried to take care of it but it didn't make it, and he buried it with his dad and decorated a R.I.P. sign and put an old fall wreath he found in the garage on the little grave. I cracked up when I saw it.

 

Let us know how the allergy appointment goes. I'm curious about how the allergies fit in.

 

Faith

[kim]

Calicat,

 

I wanted to add another WELCOME. I'm so glad you found this forum. I think you will find numerous ways to lessen or alleviate the symptoms your daughter is showing. I have two sons with tics. We have dealt with eating, sleeping, bedwetting issues, along with tics, btwn the two boys. If it's any consolation, things are going very well, and very few people have any idea of any of these problems with the boys. You are in great company here...many caring people with much to share!

 

Kim

[patty]

Kim,

 

I am so glad to hear that your two boys are doing well.

 

May i ask how long has it been since your son start having symptoms? And do the tics get better & better over time? Lastly, over the years, did your boys experience a sudden increase in symptom after months or years of very mild issues?

 

Sorry for being so invasive, i am trying to better understand the wax & wane cycle. It is comforting to know that there is light at the end of the tunnel if us parents are doing everything we know to help with our children.

 

Thx!

 

Patty

[kim]

Patty,

 

You are not being invasive at all.

 

My oldest son, who is now 14, probably started out with a humming type tic, when he was about 5. I didn't know it had anything to do with tics at the time. It was real humming, not the hum humm, type of tic. He started to shake his head around 7. I thought it was just a weird habit to begin with. A friend of mine told me that she had seen an episode of Ophra discussing TS, and maybe he had something along those lines. I didn't think it applied, since he could do it on demand.

 

Yes, he did go through periods where it would disappear, but more on than off (although not horribley life altering...most of the time). I really feel, when we started the bontech vits, things started to improve for both boys. It was not an immediate disappearing of tics, but for my oldest son, the first, and most striking thing was, he stopped complaining of aching upon waking. That was so heartbreaking. Morning after morning, he would tell me "I hurt all over." As I learned more about TS, I started to realise other things were probably tics, that I wouldn't have known before, like squeaking his tennis shoes on any floor with a shiny surface.

 

My my 10 year old (will be 11 in Oct.) is a much different story. His tics have been so mild, except right at the onset.

Opps, gotta run (to be continued)

[Calicat]

Hi everyone! Thanks for the warm welcome. I appreciate all your kind thoughts and suggestions.

 

To answer the question about a strep infection... well, I don't know. I didn't suspect a strep infection at the time, although I'm certainly considering it now. About two or three weeks before this started a month ago (I have no idea about last year's episode) she was probably the sickest she's ever been in her life. She has actually been one of the healthiest kids you'd meet--NEVER had that runny nose you often see in kids, NEVER had an ear infection, she had never been on medication for anything (except the odd Tylenol), she only had a fever a few times in her life, etc. Then a couple months ago she got SOOO sick and threw up I think 13 times the first night -- about once an hour. It took a few days to get over whatever it was and then we went on a little weekend trip to visit my sister, got home a couple days later, and she was sick again (or still??). More throwing up, and I think she mentioned a bit of a sore throat too. Then two weeks after that, the tics started. The first day was throat-clearing maybe once a minute or so. Within a couple days it multiple times a minute, but not throughout the whole day. It would get very bad in the evening. Then she added the other tics, too, like sniffing. The eye blinking has really only been for the last 5 days.

 

So, what do you think? Is this a strep possibility? Could this illness have had anything to do with the tics? If that is the case, why did the tics not come for 2 weeks after the illness?

 

At any rate, we went to the doctor yesterday. It was a walk in clinic, so I had no idea who the doctor was or how he'd respond to my request for the strep titers test. He did fight me on it a bit, saying he would have no idea how to interpret the results. I said I would (with this forum's help, of course!). So, he admitted that what I was saying was "way over his head" about PANDAS and so on, even about tics in general. Pretty good to admit that, I thought! Finally he gave in and said he'd CC a copy of the results to my home. YAY!! We'll go get that blood test tomorrow.

 

Little by little, step by step...

 

Now I want to go get my water tested. We have well water here that most people don't drink due to asthetics, although we are told it is "safe". For drinking water we use store bought, but I've always used the well water here to cook with, as I thought cooking would kill any bacterial contamination. Now I'm thinking maybe there's more than bacteria--maybe there are metals, etc. We only moved here a year and a half ago, in the winter. That first spring, she had her first episode for a few weeks. And now again this spring. What do you think... could water be a problem or exacerbate a problem? Also, there seems to be some mold IN the basement walls (drywall walls). I don't know what kind. I know my own sneezing-type allergies exploded when we moved in here. I actually use a single dose of Flonase once every 8 days or so, whenever I feel the sneezes coming back on. It keeps it completely under control that way, and I can''t believe the package suggests to use two doses every SINGLE day to have "best results". NO WAY!! I wouldn't even take it at all if it wasn't for the fact that I get completely incapacitated with up to hundreds of sneezes a day.

 

Anyway, enough about me. What do you think about the water and the mold issues? By the way, I get an extremely good deal here, and truth be told, could not really afford to move or rent a more expensive place (and they're ALL more expensive).

 

Thanks in advance for all your thoughts!

Calicat

[Chemar]

hi Calicat

 

i am busy with work so cant post long

BUT

YES!!

 

well water with metals or other such as well as mold are very possibly triggers for a lot of stuff!

 

could that you are investigating all this

 

very often it isnt just one thing, but a combination that have worked together to unbalance immune/allergy/sensitivity issues, biochemistry, metabolism, digestion, neurology and a whole host of things. As we find areas that need our attention, and "clean them up" to the best of our ability, so it seems we begin to see other areas of improvement too.

[Cum Passus]

Calicat,

 

All three of my kids are and were very healthy non- sickly. My youngest did have tube put in her ears at 18 month old, and never had another ear infection again. (she is 10 now)

 

I think back now and remember asking the ped if I should have the kids get the flu shot and she said no because my kids never get sick. It was better if they faught off the illness on their own. Thank goodness we may have seen a huge problem earlier in my sons life had he had the flu shot.

 

I think (could be wrong) that her Immune system may have been effected by the illness. I do believe diet and nutritional supplement can go a long way toward preventing and releaving systems.

 

Kind of like arthritis if one eats anti-inflammatory foods like broccoli, and foods that repair cartalege and bone it can really help. But if one eats too much acid that causes the body inflammation thus pain in the joints.

 

My mom got lyme from a tick and she has done wonderfully on vit.

 

As for the water I think that is a good idea, my parents have well water and we have town water, my son was copper toxic and I don't know how he got that. I don't know what kind of pipes we have, the house is old. I know our radiator pipes are copper.

 

My husband works for a co. that cleans up after fire and storm damage. he was just told yesterday he had to take a class on removing mold. I'll ask him what he thinks about that subject.

 

C.P.

[Cum Passus]

Calicat,

 

My husband said if the mold is not too bad you could cut the drywall out yourself. But you must find the water source, and check the wood studs for mold.

 

How his co. does it is they seal off the room with a negative air chamber, pump air outside, and use Hepa vacuumes.

 

My husband said to call a co like servicemaster have them give you a written estimate explaining how the mold is removed then use that estimate and do the work yourself. It would cut the cost a lot, If you want to save $$$.

 

Good luck, I hope this is not a huge problem for you.

 

C.P.

[kim]

Calicat,

 

As CP posted, removing the mold is always best, but if not possible right now, there are a few other things you can try. If the house has eavetroughs, make sure they are not clogged up. Use down spout extensions to get as much water away from the foundation as possible. You want to make sure that the grade (dirt) on the outside of the house is built up, to allow for positive run off. You can also try planting or landscaping the area to accomplish that. If the walls are painted, you can use a diluted bleach solution to kill the surface mold. Run a dehumidifier and keep it emptied. If there are heating registers in the basement, close them during the summer months. Keep the air exchange from the basement to the upstairs as minimal as possible. Mold loves building materials like adhesives, foams etc. even when you can't see it, it can be there. If you are able to remove the drywall and eliminate the mold completely, you will still want to take steps to keep it from returning.

 

You may want to check your attic. If there isn't adequate ventilation, homes can get mold on the rafters/ trusses and insulating materials too.

 

Also, I thought this study was kind of interesting in regards to this statement from your above post

 

If that is the case, why did the tics not come for 2 weeks after the illness?

 

 

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum

 

J Child Adolesc Psychopharmacol. 2005 Apr;15(2):285-92. Links

Association of common cold with exacerbations in pediatric but not adult patients with tic disorder: a prospective longitudinal study.Hoekstra PJ, Manson WL, Steenhuis MP, Kallenberg CG, Minderaa RB.

Child and Adolescent Psychiatry Center, Groningen, The Netherlands. Pieter.Hoekstra@kjpnn.nl

 

Cross-sectional data and case studies suggest a temporal relationship between fluctuations in tic severity and preceding infections. In this study, we aimed to examine this possible relationship in a prospective longitudinal design. Two groups of tic disorder patients were included, a pediatric group between 7 and 15 years of age (n = 20), and an adult group over 15 years of age (n = 41). During a 24-week period, participants were asked to fill out weekly self questionnaires regarding the presence of tic exacerbations and the experience of the common cold. In addition, 6 throat swabs were taken at monthly intervals and cultured for streptococci; also, 3 serial serum assessments of streptococcal antibodies were performed at 8-week intervals. In the pediatric group, our results indicated a strong association between the self report of a common cold and a symptom exacerbation 4 weeks later (Odds ratio = 4.685; p = 0.001). In the adult group, we found no association between reports of common cold and tic exacerbations. Association with streptococcal infections could not be determined owing to the limited number of observed streptococcal infections. Thus, this study points to a hitherto unknown association of common viral infections with tic exacerbations in children, which may support the involvement of immune dysregulation in tic disorders.