Hello Im new

[lolly]

Hello

My name is Lorraine and I have a 6 year old daughter diagnosed with tourrettes, ocd and mild adhd. Every day I am amazed at my daughter. She is the most wonderful little girl and I almost feel that I am betraying her by doing some of the things I have done to get help. For example, she is very bright and I hate talking to the doctors about her when she is sitting right there with me as I can see she is embarrassed sometimes. Does anyone else feel like this? It all started when she was about 2 or 3 I guess. I would take her to preschool and my friend who works there told me she kept grimacing. I never saw her do it for a long time. My daughter also had nightmares, didnt sleep well and has a really bad temper. As she has got older she never grew out of it and now she is faced with many tics including eye blinking and rolling, arm jerking, a skipping thing, touching things constantly, shoulder shrugging, noises sometimes, head jerks. Although this sounds like alot the odd thing is most people do not notice it. To me it is obvious but I think because she is so young people put it down to constant fidgeting (Im glad to say) but I think in a year or two it will be obvious as other children do calm and I realise she probably wont. She has rituals and compulsions which I find the hardest to deal with. Every night she goes to bed and I shake her blankets a certain way a number of times and read videos till she decides she wants the same one she had the night before. Then she gets out of bed, comes downstairs and makes up some excuse and it starts over. This happens continuosly all evening and drives me mad. She is very difficult to get dressed as she has to have clothes and partiularly shoes and socks a certain way and when she might be ready she will cry that they are not right and become irrate and change then change back etc. But the hardest part is that every day almost she has these major rage outbursts and throws things at me or anywhere, destroys anything in her path, swears and screams and cries with temper. It can go on for well over an hour sometimes. Afterwards she sobbs that she didnt mean it and how sorry she is and says she has a terrible headache. At school she is very advanced and they dont see anything at all. This has caused me problems with people believing me as her school report is superb. I ended up resorting to videoing one of her rage episodes this week and went to her specialist today with my father as support and finally I feel like Im getting somewhere. She has been referred to the tourrettes specialist at Great Ormond street in London so I do think she will get good support. My question to you all is has anyone got a child like an angel at school, then comes out and goes beserk for no apparent reason? Any advice will be really appreciated as most people really dont understand what it is like and it is so difficult to explain as alot of people just think of it as bad behaviour. Thanks - lorraine

[Chemar]

Hi Lolly and a big welcome

 

I do understand what you are going thru

 

I will come back and post more later as I have to rush out, but just wanted to suggest that you start reading up on Obsessive Compulsive Disorder (OCD) and Sensory Integration Dysfunction

These are often seen with TS, and it sounds like your daughter may be dealing with them too.

 

back later

bye now

[Ausclare]

Hi Lorraine,

One of my sons who is nearly 8yrs was the same with uncontrollable rages at home. His teacher didn't believe me either and I used to dread the 3pm pick up.

He is also very bright, at first he used to tic at home all the time and not at school, but then it got harder for him to hold it in at school and this would cause him the frustration, which ended with the rages at home.

 

I ended up taking him out of school and homeschooling him for most of this year. He had a younger brother at home to play with, so it wasn't too bad with them. His tic has almost completely disappeared, but we have changed the diet and do supplements. It comes back even with these measures if he is under stress.

Because his little brother will be starting school next year, I have decided to try to send Gage back. He has negotiated to go for 1st term to see how he handles it.

The three of my kids had OCD in some form or another, but this has resolved with the diet and supps.

Your daughters behaviour, sounds like it could be linked to the food she is eating, especially the rages and the sorry and headache. I live in Australia and our government let the large bread making chains put a mould inhibitor (282) in our bread. This has been linked to children showing ADHD symptoms and rages, headaches etc. It was certainly having an effect on my children as they would have toast with breakfast, a sandwich for lunch and sometimes toast after school.

 

I would advise doing a no artificial colours, preservatives and flavours diet for a week and monitor the results. I'm sure these were also responsible for my childrens OCD.

 

If you need anymore info I am happy to reply, but I don't want to confuse you with too much info at the moment. It is a long slow process and you need to do a bit at a time to figure out what works and what doesn't.

 

Look up

[url=http://www.fedupwithfoodadditives.info

 

Good luck

Clare

[Chemar]

excellent advise there from Ausclare.

 

Lorrie, it is also very possible that there is something in your home that your daughter is reacting to?

Some have found it is mould, others dustmite, or formaldehyde in carpeting etc etc

there are so many things in the environment and in foods that can trigger rage and tics and OCD etc

 

have you read thru Dr Roger's article on triggers for tics? we have found that many of these tic triggers can also set off moods etc

 

http://latitudes.org/articles/finding_triggers.htm

 

One thing is very sure.......something IS triggering your daughter's episodes, and, by a steady process of elimination, you will hopefully find the answers you need to help her.

 

Just do be aware that most of us on this forum can attest to the fact that prescription meds are really not the answer. They hide symptoms and in many cases bring bad side effects to boot. But it is far better to find the root cause of the problems and so bring about a comprehensive healing, rather than just to try the quick fix that many doctors suggest with meds.

 

Do ask as many questions as you can here and just keep expanding your knowledge at a manageable pace......as Ausclare has mentioned, it can all be somewhat overwhelming at times so just go a step at a time

 

[Claire]

Lorraine,

 

How is her sleep? Does she go to sleep easily and is she getting enough? For those with moods, sleep can really affect it tremendously.

 

 

I too felt it was very unfortunate to have my young son listen in, so we simply worked around it. No one debated this.

 

In fact, in the very beginning, one clinic (teaching hospital) said to be prepared for 2 hours as all the med students participate in the patient visits and observe/practice. I flat out refused to take him--how completely ridiculous that sounded to me. We went other routes.

 

For his pediatrician, in the beginning (before the alt doctor), my husband and I made an appointment without our son to discuss it. Since they are not prescribing meds, there was no issue for them. I refused to discuss this in front of my son.

 

For a doctor that needed to observe, we discussed it beforehand via phone, or I faxed the information. Then we didn't discuss it in front of my son.

 

Our DAN doctor (alternative med doctor who treated food allergies and checked for vitamin deficiencies) had our son at the first visit. After that, he agreed taht I didn't need to bring him--the treatment was based on tests. The additional benefit is that my son didn't have the trauma of over focusing on this matter.

 

I agree with Ausclare and Chemar, the first thing I would do is stop the artificial ingredients completely (Feingold, or Whole Foods/Wild Oats shopping). Then I would buy an air filter in case dust/mold is doing this.

 

Finally I would get an alternative doctor to uncover food sensitivities or other issues. Here are lists throughout the US. I like the DAN/Environmental doctors. But I would call first and see if they have treated children with your daughter's issues.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

I fully believe that this is treatable without meds. It will take time and commitment from you, but will ultimately free up your energy and time.

 

Claire

[Claire]

Also, I would observe closely over vacation. If she is doing much better, then the pressures of school may be the biggest near term issue.

 

Claire

[Guest Guest]

Thank you all so much for your replies, it is amazing how they have helped me feel that I am not alone. In answer to the sleep question, she doesnt sleep well at all. I think the problem is actually getting to sleep, then she is ok but for example last night it was eleven oclock which I think is late for a six year old. Since the school holidays started this week her tics seem to be bad at the moment but I am not sure if they are tics or OCD things like she breaths in deeply and stretches her neck back (she told me this one bugs her because she cant stop doing it).

 

 

I am going to plough through reading this site as I really do not want her to be put on medication and I believe she has food intolerances, just dont know what ones. I have read somewhere about strep throat and please excuse my ignorance but I dont know what it is. My daughter gets tonsillitus all the time. Is that the same thing?

 

 

Another problem I have is knowing when to discipline. I will explain - when my child goes into a rage, I let the rage go on where is it, sometimes I carry her to her room to get her away from others but generally when she calms down she is so sorry for smashing things up etc that I just talk to her but I dont punish her for that. I do punish her for misbehaving but not for the rages. I think half the time I have trouble knowing what is down to tourrettes or ocd and what is just a child being naughty. Can anyone advise?

 

Thank you all so much again, love lolly

[lolly]

Oh another thing I was wondering about was sensory problems. My specialist did say she had sensory integration difficulties but Im not too sure what that means? When she had injections she never cried or was bothered but then a label tickleing her on her clothes will send her loopy. Also she will sometimes watch telly very very loudly and then other times you can barely hear? love lolly

[Chemar]

Lolly

 

sensory integration dysfunction causes a hypersensitivity in the five senses...visual, smell, taste, hearing and touch.

In most people with SID it is the touch sense that is most bothersome...known as tactile defensiveness. They cant stand the "feel" of certain things and are mega sensitive to certain tactile stimuli. This is why so many with SID react to certain clothes, labels in shirts, seams in socks etc. Also bedding texture and weight etc etc

Most hate the feel of wool.

Cotton seems to work best.

My son gets freaked out by light feathery touch (eg the labels) and says things have to feel "firm", yet he also will not sleep with heavy covers...they have to be very lightweight

 

The SID can result in very finickity eating habits because of the taste/smell stuff, and a strong reaction to perfumes and other chemicals

 

Deep bass booms or high treble pitches are almost painful for some

and

as many on this forum can attest, on the visual side, flashing and fluorescent lights are very disturbing, and some also react to TV/Computer etc

 

 

Their is an EXCELLENT book on Sensory Integration Dysfunction called "The Out of Sync Child" by Carol Stock Kranowitz

 

 

hope that helps.

 

 

 

re the discipline.......yes, we walk a very fine line in deciding what is bad behaviour and what is symptomatic. You know your own child better than anyone and so you really do have to follow your instincts on this. Just remember, where is is important to be very understanding and supportive of the things that your child cant help because of the TS, it is also important to guide her in ways that will help her to integrate with society. When she is a little older, you may want to look for a compassionate therapist who does Cognitive Behavioural Therapy, which, with the right kind of therapist, is an excellent help in developing coping skills for symptomatic and other behavioural issues.

 

 

God Bless and congrats again on being a super mom who seeks knowledge to help her child

[Claire]

I certainly wouldn't punish for rages, it seems like it would feed them further. As Chemar said, I would go with your instincts. Behavior does need boundaries, so difficult to manage that one.

 

Strep is a bacterial infection. Tonsilitis is any kind of throat infection, including strep. If she gets it a lot, I would recommend that you have the doctor run a throat culture now, in case it wasn't totally resolved. Treating unresolved strep with antibiotics can reduce tics/ocd.

 

If she is on antibiotics a lot she can have secondary issues with yeast also. Or low zinc, which makes her susceptible to infections.

 

They have specialists (MDs) that run all sorts of tests including food sensitivities. There is a list at the top of this thread. From all that you describe, there is a good chance she has underlying immune issues. These can be treated. Good idea to scan the threads for ideas and success stories.

 

Claire

[Ausclare]

Wow Chemar,

I learn somethng everytime I open this site. For years my son has driven me crazy with having to cut off the labels, and just today he was complaining about the seams in his socks. I had never thought that this was a known problem. I just thought he was whinging about anything he could to get my attention. He also has problems with noise levels and this was part of the problem at school. It was the background noise that bothered him. He has also had reoccurent ear infections and lost his hearing at one stage. He has had 2 sets of gromets, but is fine now as long as he wears ear plugs when in water. Does this have anything to do with strep infections?

Thanks

Clare

[Helen]

Hi All,

 

Just as I was looking through the web site for more info to cure my 6 y.o. daughter's tics, I came across something called SID & I'm now worried about my 4 y.o. son also! He doesn't have tics but he has very very bad temper sometimes even when he was younger and we'd all thought that he was just spoiled by everyone being the baby in the family. He has always been very "specific" in his clothings. the color, the texture, etc. Inside labels and pants are big problems; he only wears sweat pants because they are comfortable. You don't know how many times I have fights with him in the mornings trying to dress him. He would take off anything you put on him if he decides that he doesn't want to wear them! I'm not sure what SID is? Is this an illness like TS? For my son, I just think that he's spoiled (He does get away with a lot of things sometimes being the youngest one!) However, I'm worried about him sometimes 'cause he likes to hit. He can be very uncontrollable if you try to punish him even with a gentle spanking on his bud. He will DEFINITELY hit you back. How do you classify SID from a little hyperactive child?

 

Any comments will be appreciated.

 

Helen

[Claire]

Helen,

 

If your daughter has TS, I can imagine that your son could be at risk for neurological issues.

 

It is tough to 'classify' people over the internet. However, some of the things you describe fall into that category of SID. I know they have treatments like brushing the skin to reduce sensitivity--you would need professional guidance though

 

The behavioral things you describe could be food related.

 

I suspect that the same things you do with your daughter, you do may wish to try with your son...I think others here have seen siblings benefit in such a way.

e.g. eliminating artificial ingredients, testing for food sensitivities...a couple of posters even noticed improvements in behavior from less TV/screen viewing--so perhaps if you do a no screens week for your daughter, the whole family can try it.

 

However, food sensitivities comes to mind first for behavioral issues.

 

Claire

[Phyl]

The Out-Of-Sync Child: Recognizing and Coping With Sensory Integration Dysfunctionby Carol Stock Kranowitz, Larry B. Silver is an excellent helpful book that describe SID very well. Carol Kranowitz has also written another book called The Out of Sync Child has Fun.

 

These look like 2 good websites with lots of links about SID: http://www.geocities.com/~kasmom/sid.html

http://www.tsbvi.edu/Outreach/seehear/fall...l97/sensory.htm

 

From what I know, SID can involve more than the 5 senses; it can also affect the vestibular system (sense of balance and movement).

 

Phyl