can anyone help?

[jules41]

Hi all

I have been reading this site for the past 2 weeks and have found some of the information really useful. I am wondering if any of you could help by providing some feedback on queries that I have regarding my son.

 

In January this year my son was complaing of a really sore tummy and was crying going to bed at night because of the pain. He is generally a really healthy active boy - has had about 2 days off of school sick in 4 years so this was unlike him. I was a little concerned about it but he seemed fine during the days and didn't want to go to the doctors so I let it go. A couple of weeks later a rash appeared around his neck and on his tummy but we were travelling out to Australia to have a look at houses and schools as we are moving there from Belgium so I didn't bother taking him to the doctor as it didn't seem to be bothering him and I felt it didn't look serious. Whilst in Australia for a 3 week visit he had interviews at 5 schools - pretty stressful - and we looked at houses, had medicals carried out etc. We returned to Belgium on Friday at the end of March and he went back to his current school on the Monday. He is 7 years old - due to turn 8 next week.

 

When I went to meet him from school - he was playing hockey - he was having neck tics. I had never seen this before and didn't recognise it but was really worried and concerned. I kept telling him to stop it but within a week the tics had progressed to include facial grimaces so I took him along to our doctor. He felt that it was nothing to worry aboutand was probably the stress of moving so I should just ignore them. I was not happy though and made an appointment to see a Professor of neurology. I took him there and they ran tests but he also feels that they are transient and should go. There is no history of tics in either my husbands or my family and my son has had no previous behavioural issues. He is actually very bright and is in a gifted and talented class. My worry is that the tics have now progressed and he is also displaying vocal tics - he is doing a mouh pouting and sniffing tic also.

 

My son hates them and I notice that in the last month his confidence and behaviour has changed considerably. I asked the doctor if he felt that there could be a link between the tummy pains, rash (it was diagnosed as a fungal infection and he has been given an anti fungal cream to treat it) and the tics starting. They all came at the same time. Jet lag and stress may also have triggered things. He felt that it was not related at all and that this is simply transient childhood tics. I am worried that it is now looking like tourettes.

 

Please, any advice would be really appreciated. I am so upset and like all of you feel physically sick every day. I am so worried that this is going to get worse and it could be lifelong. He has had nothing before. I have started him on Magnesium, multivitamins, Omega 3 and reducing dairy and additives etc. We always eat reasonably healthy anyway and he is usually very active playing so many sports daily. Since then he has not wanted to go to any of his clubs and I have not forced hime. I feel that my son is changing.

 

Sorry that this post is so long but I really do need to talk and get some feedback. (My husband has already left to start his new job and the boys and I move out next month so that is also stressful. We are moving to the other side of the world, new school, friends, home etc and they don't have their Dad at the moment). Could it be stress related. I know that most information suggests that stress can't cause it only exacerbate symptoms.

 

Thanks

[faith]

Hello Jules41 and welcome,

We all can relate to your experience right now, we have all been there. It is probably true that the stress of traveling and going thru a move to a different country is adding to all this with your son. Did he all of a sudden get tics over a short period of time, or have you seen little tics here and there in the past? I know its hard, but do try to ignore the tics and not remind him or stress him into thinking he should stop, for that will just make him feel like doing it more. Try and read as much as you can. Since you mention your child was sick for a time, are you aware of PANDAS? we have a separate board here that you can check out to see if there may be a connection to his symptoms.

 

Your son is still young and kids his age do not really notice these things in their peers, it is way more stressful to us as parents. Try not to worry too much, things will not be as bad as you percieve right now.

 

Blessings

Faith

[jules41]

Thank you Faith.

 

He did seem to get it suddenly - and things seem to change alomost daily. I notice that the tics are worse after collecting him from school. Although he had a sore tummy and the fungal infection he did not seem sick at the time or I would have taken him along to the doctor. I did think about PANDAS after reading the posts but he didn't have a sore throat. I do remember once when he was about 1 1/2 years old he had a funny thing that he did where he seemed to go into a little trance. At that stage I took him along to the hospital thinking it may have been petit mal seizures but they checked him and the neurologist felt that this was his way of processing memory and information of the day as it always happened at night. He said not to worry and it did go away after about 4 weeks. There has been nothing since - for 5 years - and now this. I really do feel worried. Is it possible for transient tics to have come on so suddenly and with changing tics. That sounds more like tourettes. I really do appreciate everyone's support on here. It is an incredibly useful site.

 

I guess I would like to hear about people who have been in this situation where their children got tics and then 3 months later it is gone but everything points to multiple tics being longer lasting.

 

J

[mommyof2]

Hello and welcome

I did want to mention something about strep...my nieces son had strep with a sore throat and she took her duaghter in, no sore throat or rash, but to have her checked to be sure and she also had it.... again no signes of it at all, wonder how many kids have strep and don't even know it.

 

Mary

[jules41]

Hello and welcome

I did want to mention something about strep...my nieces son had strep with a sore throat and she took her duaghter in, no sore throat or rash, but to have her checked to be sure and she also had it.... again no signes of it at all, wonder how many kids have strep and don't even know it.

 

Mary

 

 

Thank you. I may ask the doctor to check for any possibility for strep throat. If it is strep throat it would mean he has probably had it for a few months. Would it still be detected or do you think it would be too late now?

[QsMom]

Definitely visit the PANDAS section of ACN. Those who frequent that section deal with strep on a regular basis and can answer your question about testing.

 

You would want to get a blood test NOT the rapid test strep test.

 

I'm curious about the rash b/c strep can come with a rash which I understand can be sand-paper-like.

 

For the neck tics, try Epsom baths or Magnesium cream. They really help my son when he is having neck or shoulder tics.

 

Good luck!

[trggirl]

Hi, I did want to mention that Omega 3's cause my daughter's tics to go from "barely noticable" to almost convulsive like. Just an fyi.

[CarolynN]

Hello,

 

I am so sorry to hear your family is going through this. I know how hard and stressful it is. For me, prior to figuring out what to do for my son which was food chemical sensitivity, it just consumed me. But the good thing is there are answers it is just a matter of figuring out what direction to go. You could compare tics to something like a migraine in that different things cause the migraine, various foods or environmental triggers, but you get the same end result.....a real bad headache. Same thing with tics different things can set the body off with tics (food, chemicals, strep, candida, lack of magnesium, lack of B's or even all the above), but the same end result tics. This is where it starts to get tricky in figuring it out but the detective work is so well worth the effort. I kept food journals and through the journals and prayer I came to understand his triggers.

 

I want to share with you my story of strep. Both of my son's have had something called Perianal strep. It is strep that starts in the intestional area and grows out into the bottom. It is VERY, VERY uncomfortable. We finally figured out how to get rid of it I typed it out below. But my whole point is strep can grow in various parts of the body it is not just isolated to the throat.

 

I wanted to attach an two old posts I found similiar to your situation. Both these people who posted had their children come up with negative tests for PANDAS but PANDAS was still the suspicion. I thought you might find it interesting http://www.latitudes.org/forums/index.php?showtopic=1894 and http://www.latitudes.org/forums/lofiversio....php?t1826.html . Do you know about the subset of PANDAS called PITANDS?

 

Also I was thinking about what kind of things could cause a reaction where you did not see one before. I remember reading of a boy who had a sudden onset of bad tics. They were able to track it back to newly layed carpet at his school. The fumes from the new carpet were triggering him. Perhaps did you buy a new vehicle that would have new carpet in it or any new carpet at home?

 

I was thinking, just a long shot, but have you had a lot of rain in your area where there could be the possibility of mold that grew all of a sudden in your home that he could have had a reaction too? Did he start using a new body wash, soap, or did you switch laundry detergents? Can you think of any new scents like candles or airfreshners?

 

One other thing to consider, and I don't know if you read my MSG information I just posted, but I was thinking lets assume x,y,z triggered her body (whatever it is). Lets also assume, because I don't know, he normally has a fairly high tollerance for MSG or artificial food dyes. At this point one way or another, because of his original unknown trigger, his neurotransmitters are not in balance. So lets assume what ever triggered him is no longer necessarily affecting him directly but other things that affect the nervous system (like MSG and artificial food colorings) would be continuing on the reaction and not allowing his neurotransmitters to come back into balance. Because these foods naturally excite the nervous system they would be carrying out an additonal reaction in him. Even if these foods normally, when his body is not taxed, did not bother him. I see this with my own son when his tics are elevated. Here is my post on what foods to look for that contain MSG http://www.latitudes.org/forums/index.php?showtopic=2598 .

 

If you think it is an underlying bacterial infection, whether it be strep or something else, I wanted to share with you what my Naturopathic Doctor told me to do for my two sons when they had perianal strep (strep that grows in the intestional track and out the bottom - again very painful!) and I had strep throat recently and it worked for me. Since strep is a bacterial infection, this should work, in theory, for other bacterial infections too. I don't think it would do much for a viral infection. As a side note, my one son had been on two forms of good old anti-biotics for the perianal strep and it did not get rid of it but the below remedy did.

 

She told me to have my sons (at the time they were 3 and 5) take grapefruit seed extract (125 mg tablets) twice a day. Also to take collodial silver twice a day (I buy a brand called Sovereign Silver supposably it has the smallest partical size) and a good quality probiotic. She told me to do this for 10 days. The grapefruit seed extract is a very powerful natural antibiotic. It cleared up both cases of perianal strep. It has also cleared up other cases of strep throat we have had in the house since.

 

Now when I had strep I also got liquid grapefruit seed extract and put two or three drops in about 6 or so ounces of water and gargled. Within about 2 hours, and I am not joking, after I started gargling with it I noticed a big difference. By the next evening it was a vast improvement. The problem that I ran into is I over did a good thing. Grapefruit seed extract is VERY bitter. I should only have gargled a couple times a day and I was doing it at least every two hours, and also when I would wake up at night. So with that said I ended up with a blocked salvia gland. If you read on the internet about using grapefruit seed extract, in not such high doses as I did of course, you will see that it is very effective against strep and I can certainly attest to it!

 

One easy way to get children to swallow the liquid form of grapefruit seed extract is put it in lemonade it does a pretty good job of disguising the taste. But the long and short of it is grapefruit seed extract is excellent at getting rid of strep along with the probiotics. Just don't over do the grapefruit seed extract gargling.

 

Just very quickly, I know there has been some press on side effects of collodial silver. If you take it in a manner where you manufacture it at home you can end up with a condition, using it over a long period of time and in VERY rare circumstances, where the skin turns a silver type color. But if you read up on it you will quickly see it is not related in with the reputable manufacturers and by using it according the the correct directions. I, personally although many people do take it every day, only use it during times of illness to take any remote possibility of risk away.

 

Also if your son has a metal allergy I don't know how that would effect him taking the collodial silver or if he has a citrus allergy would he react to the grapefruit seed extract? Just something to consider.

 

Keep up hope. Obviously something triggered him. This strong of a reaction did not just come out of no where.

 

God Bless,

 

Carolyn

[EAMom]

hi jules41,

yes, post on the pandas forum if you want to know more about PANDAS. You should definitely get a throat culture (even if there is no sore throat/fever). You can do the rapid but if that is negative follow up with the 72 hour culture. If both rapid and culture is negative are negative consider running strep titers (ASO/anti-dnase b ).

I wouldn't rely on running just titers...since PANDAS kids can definitely have positive cultures with negative or low titers.

[Caryn]

Without knowing what the rash looked like, how long it persevered, or any other details, it would be hard to say what it could be or if it is related to the tics. Rash can be viral (which can lead to ticcing behavior up to 4 weeks after the attack). It can't hurt to get tested for PANDAS as EAmom suggested. I would also look into candida as well. Just a hunch. My son got ticcy when he started school. It passed as quickly as it came.

Stress is a major, major trigger. When the body is under stress it produces more cortisol. He is probably just having a reaction to all that 'adult' stress. Moving cities is one thing, hopping a continent is another.

 

Try giving him epsom salt baths. This might help.

[jules41]

Without knowing what the rash looked like, how long it persevered, or any other details, it would be hard to say what it could be or if it is related to the tics. Rash can be viral (which can lead to ticcing behavior up to 4 weeks after the attack). It can't hurt to get tested for PANDAS as EAmom suggested. I would also look into candida as well. Just a hunch. My son got ticcy when he started school. It passed as quickly as it came.

Stress is a major, major trigger. When the body is under stress it produces more cortisol. He is probably just having a reaction to all that 'adult' stress. Moving cities is one thing, hopping a continent is another.

 

Try giving him epsom salt baths. This might help.

 

The rash was shiny, lasted for 4 months and the doctor said that it was a fungal infection and gave him an antifungal cream which has more or less cleared it up. He had the rash around his neck and a tiny little bit on his face, also on his chest and on his tummy. Thank you so much for all your advice. It is amazing how helpful people are.

[melanie]

Without knowing what the rash looked like, how long it persevered, or any other details, it would be hard to say what it could be or if it is related to the tics. Rash can be viral (which can lead to ticcing behavior up to 4 weeks after the attack). It can't hurt to get tested for PANDAS as EAmom suggested. I would also look into candida as well. Just a hunch. My son got ticcy when he started school. It passed as quickly as it came.

Stress is a major, major trigger. When the body is under stress it produces more cortisol. He is probably just having a reaction to all that 'adult' stress. Moving cities is one thing, hopping a continent is another.

 

Try giving him epsom salt baths. This might help.

 

The rash was shiny, lasted for 4 months and the doctor said that it was a fungal infection and gave him an antifungal cream which has more or less cleared it up. He had the rash around his neck and a tiny little bit on his face, also on his chest and on his tummy. Thank you so much for all your advice. It is amazing how helpful people are.

 

 

I know Im spelling this wrong but look at tinnia verse colar my husband has that he gets it when he sweats and its genetic not bad but it is a fungal infection he gets a soapy shampooy thing to wash with and it goes away in like 2 days he gets it mainly in the summer maybe its woth looking into it

good luck

melanie

[jules41]

Thank you Carolyn

 

I really appreciate the time you put into putting together your response. I am not too keen on the idea of using collodial silver - I did buy it once when my son had molluscum contagiousum as I had read that it was effective for that but I then read so many negative reports that I threw everything in the bin. I will try the grapefruit seed extract although I have no idea where I would get it here. I live in Belgium and find it extremely difficult to buy natural remedies anywhere - if they are around I usually cannot understand what to do with them.

 

I am moving to Australia next month so hopefully it will be much easier to get everything I need to look at treating this disorder if it persists. My son did seem to be much better at the beginning of the week but then yesterday and today he has been really agitated, his tics are stronger again and he seems to be displaying different behaviours. That is the part I am finding really difficult to deal with. He seemed to change overnight in his personality. He was the most easy going, laid back, intelligent and articulate boy and now he seems agitated, twitchy, cannot concentrate, moody, overly sensitive and does not pay attention or understand what is being asked of him. Really concerning. One day I feel positive and the next day I just want to cry for the boy he was. It sounds terrible I know but I am really struggling to deal with these changes.

 

All the feedback is very helpful and I hope it is just a matter of time before I put things into perspective and together we deal with the changes and he has a happy childhood and adulthood.

 

J

[shydee75]

Hi Jules41,

 

I know exactly how you feel. My dd also changed overnight and I went through a whole lot of crying, desperation and agitation as well. I'm still crying and I'm still desperate.

 

My kid is six and she has lost tremendous weight as a result of the dietary changes, supplements, anxiety etc. Sometimes, I look at her and I wonder how she is coping but you know what, she has her own strategy and coping mechanism.

 

I have no solutions for you because I am groping along as well. But, just hang in there and if things don't get to where they used to be, don't despair. Latitudes has helped me through a difficult time and trust me, you will get stronger. After all, what choice do we really have - we love our children to bits and we have to do everything in our capacity to help them attain a good life.

 

Shy

[jules41]

Hi Jules41,

 

I know exactly how you feel. My dd also changed overnight and I went through a whole lot of crying, desperation and agitation as well. I'm still crying and I'm still desperate.

 

My kid is six and she has lost tremendous weight as a result of the dietary changes, supplements, anxiety etc. Sometimes, I look at her and I wonder how she is coping but you know what, she has her own strategy and coping mechanism.

 

I have no solutions for you because I am groping along as well. But, just hang in there and if things don't get to where they used to be, don't despair. Latitudes has helped me through a difficult time and trust me, you will get stronger. After all, what choice do we really have - we love our children to bits and we have to do everything in our capacity to help them attain a good life.

 

Shy

 

Thank you Shy. I hope it all works out for both of us. They are still young so hopefully it is something that their bodies will adjust to as they mature and one day it will just be a memory.

J