New Jersey Mom Needs Encouragement

[Dara]

Hi Alison,

 

Tomorrow morning (Saturday) starts no TV for a week. I'm so excited that I finally got up enough nerve to go through with it. My husband Karl just detached all the cable connections to the TV's so as of tomorrow morning, the TV's are all 'broken'. As you can tell from my posts, this humming tic has really set me off. I guess it's because, Karl (our son) had been doing fantastic during December and January. Not to say that all of his tics disappeared, but they had improved tremendously. I think deep down inside I was hoping/thinking that we beat this thing. So of course, when a new tic showed itself, I felt very defeated.

 

I've been so emotional I can't tell you. Crying at everything, and it's not like this is brand new to me, we've been dealing with it for almost a year. I think I'm just mentally and physically exhausted, angry & sad. I'm trying to live a normal life when there are abnormal things going on around me. I do believe in my heart, that we're moving in the right direction and at some point we'll figure things out.

 

As a sidenote, it's funny, my husband is down in the basement right now playing guitar and I can hear him. Of course he's also drinking some nice red wine, ha, ha. But what I'm trying to get at is that's his way of escaping and dealing with this situation, my way of dealing is to be posting on this forum. It's so great to talk with others who are going through the same thing. Thank god I found all of you.

 

Anyway, I got the result of Karl's 24 hour urine toxic metals test and it only showed an elevated level for 'cadmium'. I have to be honest, I never heard of 'cadmium'. My doctor didn't seem overly concerned with it and prescribed 25 ml of zinc. I guess the cadmium will bind with the zinc and will be excreted from the urine. After much talking, (I of course was the one who brought a 'huge' list of questions, concerns and additonal tests that I thought would be benefical to my son), our doctor ordered a stool test to be done for parasites, another urine test to be done for Lyme disease (our son was tested for Lyme last May through a blood test and it all was normal except for one band. Since we're seeing a new group of doctors now, they wanted a new test run, with new results). They also wanted to test for an auto-immune disorder. In November when we first started seeing this new doctor(s), they ordered a routine series of bloodwork which was sent to Bio-Reference Labs in Elmwood Park, NJ.. I'm sure you're son had something similar done. Anyway, there was one item under the 'MISC' section that concerned our doctor. Under the 'test description' catagory it is listed as 'hs C-RP' and the result was 9.6 HI. Anything > 3.0 was considered HIGH. He explained it as a marker which indicates a current infection/inflammation somewhere in the body. Of course it doesn't direct you to the exact cause. As a result of this, Dr. Juco, wanted to test for an auto-immune disorder.

 

That's all for now, I plan on documenting my TV removal on this forum as a day by day play. Have a great weekend.

 

Dara

[Andy]

Dara, if I may suggest. You might want to call a DAN doctor and ask them if they have ever worked with a child labeled with TS. The DAN doctors are at the forefont of the research and treatment with these issues. I wished I went to one four years ago but I did not see the connection then. Two highly rated DAN doctors in New Jersey are Dr. Stuart Freedenfeld in Stockton, NJ and Dr. James Neubrander in Edison New Jersy. They may be of assistance to you and have no idea of whom I am. I just know of their names from research papers.

[Guest Guest]

I guess it's because, Karl (our son) had been doing fantastic during December and January.  Not to say that all of his tics disappeared, but they had improved tremendously.  I think deep down inside I was hoping/thinking that we beat this thing.  So of course, when a new tic showed itself, I felt very defeated. 

 

I've been so emotional I can't tell you.  Crying at everything, and it's not like this is brand new to me, we've been dealing with it for almost a year.  I think I'm just mentally and physically exhausted, angry & sad. 

Hi Dora,

 

Sorry, I quoted your writing as it's exactly how I feel now. I totally understand your feeling. My son stopped watching TV about a year with food limitations (definitely no dairy). TV and light changes are his big triggers. He's treated with homeopathic remedies for a year. He's been doing great in last 4 months and I almost forgot about his problem. About a month ago, he went for a field trip to watch a show (from a projector) in a dark room. The show also involves lighting that really set him off. All his tics came back (mainly eye rollings, some times with neck shaking). He told me that his eyes are sore. I feel so sorry for him. I don't let him eat his favor food, I don't let him watch TV/computer and no e-games, etc. but I still can't help him completely off his problem. At this moment, we're sort of clueless. We started to see a DAN doctor couple weeks ago. He had blood test for heavy metals and vitamin profile. I'm looking forward to his test results back, and hope the test results will give us some clues. As the bottom line, you're not alone.

It's not easy. Let's keep ourself up. It's good that we can share our experience and support each other.

Jean

[Guest Guest]

Dora,

 

Forgot to mention, as many others already mentioned, you may want to consider remove dairy. I found out that dairy causes his nose congestion that causes his sniffing.

 

Jean

[ad_ccl]

Hi Dara,

 

I am so glad that you and your husband are starting to implement the no screens. Probably wise to start on a weekend if you are both home. I am looking forward to reading your daily updates. I know I found it very therapeutic writing daily while I was going through the same stage as you are. I partly wrote hoping it would some day help someone else but it was also helping me in the present time which I needed. I agree with Andy and everyone else about how difficult this is and that somehow we have to be strong in front of our children, although it is hard. I would try never to bring up his "habits" as we called them, but admittedly in weak moments would tell him to stop, then felt awful about it afterwards. Your comment about trying to live a normal life when abnormal stuff is going on sure hit a cord. The pure and utter exhaustion mentally, emotionally and physically also rang so true for me. At the time I got great advise from Ronna, Chemar and Claire about how important it was to look after myself as well. I was completely run down and had not had a good night sleep in months as my brain would not shut off at night, I was popping advil daily for my chronic headaches, I spent every free waking moment on the computer, I had three small children to look after. Ultimately I shut many friends out as I could not even talk about what was going on as it was too hard to explain without crying, and I felt I had to protect myself some how. In the end I did what I had to do in that moment. I had a few close friends who knew what was happening, and I had this forum where I would share my feelings as well. It was nice here as there was no need to explain anything, other's just understood the raw emotions. Once we were on a clearer path I was able to explain to friends what was going on - over the holidays I had cancelled many plans with friends due to his severe neck tic that came a few days before Christmas as a result of a viral infection. We were also trying to be so careful not to have him come in contact with anyone who was sick and around the holidays so many kids have colds etc. So we really just spent time as a family which was also good.

I am glad you are starting to get some testing done - I think you did the ELISA already, as I know you have talked about testing to show he was allergic to milk. I do not know anything about the auto-immune testing or other testing you talked about. All we have done to date was the ELISA testing and a heavy metals testing on hair.

I am assuming you are reading all labels etc. for hidden milk ingredients. If I recall correctly you are going fairly organic etc.

We are back to reducing tv as well - my son's tics remain minimal - but I am sure the few days of many hours of tv has not helped any. We would like to get back to how things were before this strep infection and I am sure reducing/eliminating tv can only help.

 

Good Luck, and I do look forward to hearing your news. I was amazed at the insight I got from writing some things which I did not really think were that relevant - Claire pointed out the lights at a toys r us may have been a problem when I described a huge increase in tics when we went there for his reward for not watching tv - he had been close to tic free at the time - I assumed it was his excitement. In the end Claire was absolutely correct.

 

Take Care,

Alison

[Dara]

Andy,

 

Funny that you mention Dr. James Neubrander. I had had an appointment scheduled with him last summer when the tics first appeared. I spoke to him on the phone and didn't really like the way the conversation went. Maybe we should revisit the idea of seeing him. At this point, I don't know what to do.

 

Dara

[Dara]

Jean,

 

Hi...Our son Karl has been totally off dairy for three months now. He never liked it to begin with so it was easy for us. You're right about sticking together and being strong. Sometimes it's just so hard.

 

Keep in touch

 

Dara

[Dara]

Alison,

 

Our first morning with no TV went amazingly well. Unfortunately, my sons tics are terrible this morning, so all I've done is focus on him and not that the TV is turned off. God give me strength. We were supposed to be having friends over for dinner tonight, but I don't feel like it at all. I really pray that we see some improvement by the end of next week.

 

Dara

[Guest Guest]

Hi Dora,

 

I didn't really follow your thread, the things that I mention here may not be applicable to your son. But I share it with you just in case. It's been raining a lot in my area. My son told me that raining day makes him not feel good. He doesn't like the smell after the raining. He also likes to eat mushrooms. I noticed that his tic increased after he had mushrooms. We suspect that mold can be one of factors contribute to his recent tic increasing. I keep the air filter (with UV light) up running when I'm home. It seems helped him. BTW, my son has allergy to environmental stuff (i.e., weeds, trees, grass, dusts). He also has asthma. Have you had any weather, environment changes around you lately?

 

Jean

[Dara]

Hi Jean,

 

The weather in NJ has been so strange. Last week we were in Florida and this week we're home and it's snowing. Trying to find the 'triggers' are so difficult sometimes.

 

Dara

[Andy]

Dara, I don't know why you had a wrong feeling about the DR. but I always believed in trusting your first vibe on a person. He is , however, listed as a personal recommendation by Amy Holmes but he may only focus on Autism. The DAN doctor I am currently using feels that Autism, TS, ADD are all caused by the mercury in the vacination shots, which was vastly reduced just recently in this country. I am providing a list that I obtained off of Amy Holmes website of Dan doctors and DOs, who also have to pass the medical boards to practice, that you may want to feel out if you are interested. You may also might want to check out the list that is provided thru this website.

 

Richard B. Menashe, P.O.

15 South Main Street

Edison, NJ 08840

tel: 732-906-8866

fax: 732-906-0424

 

 

James Neubrander, M.D., F.A.A.E.M.

15 S. Main Street, Suite 6

Edison, NJ 08837

tel: 732-634-3666

fax: 732-634-8008

 

 

Stuart H. Freedenfeld, M.D.

56 So. Main Street

Stockton, NJ 08559

tel: 609-397-8585

fax: 609-397-9335

 

 

Roberta Foss-Morgan, M.D.

30 N. Haddon Avenue

Haddonfield, NJ 08033

tel: 856-216-9001

fax: 856-616-9837

 

 

Scott R. Greenberg

1907 Greentree Road

Cherry Hill, NJ 08003

tel: 856-424-8222

fax: 856-424-2599

 

 

Allan Magaziner, D.O.

1907 Greentree Road

Cherry Hill, NJ 08003

tel: 856-424-8222

fax: 856-424-2599

 

 

Emar Vogelaar, M.D.

European Lab of Nutrients, Vitamin Diagnostics Inc.

Route 35 and Industrial Drive

Cliffwood Beach, NJ 07735

tel: 1-732-583-7773

fax: 1-732-583-7774

 

As for Florida, I live in the sunshine state and I had to stop letting my son swim in the community pools for he was a complete mess afterwards and it took him a long time to recover. I also believed it was the clorine. Now we just hit the beach and are careful to read the labels of the suntan lotions.

 

Also if I may suggest , keep an open mind and look at and research everything before you make a decision.

[Guest Guest_Dara]

Andy,

 

I called Dr. Neubrander yesterday and have decided to go ahead and get a second opinion. And you are correct, Dr. Neubrander does specialize in autisum, but back in the early fall, he was willing to take on my sons case since these disorders are all interelated. I really think the chlorine last week fired something up in our son. His tics haven't been this bad since starting Dr. Ali's program back in December. In fact, I thought we were in the clear and couldn't imagine Karl's tics comming back like this again. As always it's upsetting for me to watch him tic.

 

Thanks again for the information on all those DAN doctors. I actually found our doctor, Dr. Majid Ali, Denville, NJ through the latitudes publication. He's a well know environmental MD who treats neurological disorders (and other things) through total body health - identifing food sensitivities, inhalent allergies then setting up a program of supplements, sublingual drops and diet restrictions. I've felt very comfortable with what he's done for us so far, but of course, when some of the tics start comming back, I think to myself that maybe there's something else out there that we can do for our son (i.e. a second opinion from Dr. Neubrander).

 

Take Care.

 

Dara