feeling helpless

[mom2ck]

I am so glad I found a forum where other's are experiencing similar situations with tics. I subscribe to other forums of personal interest and hobbies so thought this might also be the way to find out info for my son.

As background, my DS will soon turn 7 and was diagnosed about a year ago with adhd and ocd. About a month or two before his appt., we started noticing a strange movement with him moving his arm. I finally realized it was a tic and told the dr. Our ped. dr. put him on focalin xr for his adhd. Our insurance wouldn't cover the meds or dr. because it was a mental illness (adhd). Plus, he started having another tic (licking his lips constantly). So, my DH and I took my DS off the meds.

At that time, I had him seen by a chiropractor that specializes in natural health. She did a hair analysis and determined he was a 4 low...bad. She also had a son with the same outcome and through vitamins and diet was able to turn him around. We tried the vitamin therapy, but didn't see any improvement. Plus, it is hard because he can't take pills (gag reflex) and very sensitive to different smells and texture. Therefore, many of the supplements he wouldn't take. I also watched what he ate, but didn't do a complete elimination. We may have not given it enough time...about 3 months.

However, the tics kept getting worse so I made another appt. with his ped. dr. and he was diagnosed with tics disorder. Over the last year, he has had many tics: arm movement, lips licking, finger sniffing, private touching, head shake and nod and he even had a bowel movement problem of going in his pants for about 3 months. However the dr. says this is not a tic...I diagree. Luckily, that is over.

Our ped dr. was able to get us some samples of strattera to try. It helped both the tics and adhd, but still not idea. So, she raised his dosage for 1 week to try it. The first day he complained of stomach aches and the second day he threw up, and again on the 3rd day. So, I put him back down to the 25 mg. So, we went for a med check yesterday. She has know started him on clonidine in combination with the strattera. After just 1/2 dose he is easily agitated and very sleepy. After going on a morning walk he was so tired and came home and went to sleep for a couple of hours. He is still groggy this afternoon. This is coming from a child that never naps!!!

Anyhow, I have prayed about his situation and talked with my dr. numerous times. She said it takes 3 mo. to get into a psychiatrist so doesn't want to go that route. Instead she will confer with him. But, I feel like I need to be doing something else. I feel like he needs to see someone who knows this disorder well. My ped. dr. is trying to help, but it doesn't seem like we are getting anywhere. She also wants him to start seeing a counselor for his anger and dealing with people. He sees the school counselor when in session. I'm really concerned with the tics and the social problems he has. I can deal with the adhd. (I'm a teacher) and have had training in this area.

So, what should I do? Where should I turn? Does he need further testing or a specialist? I really would appreciate your help as I'm feeling very helpless.

[Chemar]

Hi and welcome

 

my husband became psychotic when given clonidine for his tics and high blood pressure.

 

this went away as soon as he came off it.

 

our son experienced psychosis from other medications (haldol and luvox) and had a very very serious reaction to zyprexa

 

the other side effects we observed make a long list

 

I would just urge you to read up on both those medications (google adverse effect and the med name )

 

doctors are so quick to add meds or up doses when in fact it is the med itself causing the probs

 

a book that really helped me see the light was "Your Drug May Be You Problem" by Peter Breggin MD

 

http://www.breggin.com/

 

 

http://breggin.com/index.php?option=com_co...7&Itemid=42

 

there are sections on strattera and on clonidine in the book

[Pamela Kay]

With my son I found out food was big trigger for him. Back when all his tics started, I thought he had a learning disability as well. Upon researching I found that food allergies could be a trigger for tics and cause learing problems. Well I decided to cut out High fructose corn syrup and artificial colors/flavors. He made a huge improvement. He was not quite tic free though but I eventually narrowed corn as his biggest trigger. I actually had him tested by a regular allergist, the skin prick way, and he tested allergic to corn as well as many environmental allergies. Since then we have had him blood tested for allergies and he is no longer allergic to corn he just has mild allergies to all dairy and wheat/gluten. He still tics spring and fall but I contribute that to his environmental allergies. So I guess I would get him tested for allergies if you have not already.

 

We also do epsom salt baths. I usually just do this when his tics start up again though.

 

I hope this helped a bit.

[mom2ck]

I was just telling my parents about some of the things I have read on here and allergies was one of them. He does have seasonal allergies and is on loratadine (claritin) for it. However, I only give it to him when he has flareups. I personally hate meds and don't want him on any. My husband on the other hand wants a quick cure and sees meds as the answer. But, he is also open to other things if they work!

As a side note, my husband was never diagnosed as adhd but I have diagnosed him as being the inattentive type and my son as the over-focused type. I have never been diagnosed as ocd, but do probally have mild ocd as things have always had to be perfect or near perfect. However, dealing with tics is something neither of us have had or anyone in our families.

So, how do I go about getting an allergy test? Will my ped dr. do this? Or, do I have to go to a specialist? It would be so much easier cutting something out of our diets if I knew what it was. Just about everything you buy has additives of some kind in it. Therefore, it is almost impossible to do for me.

[Pamela Kay]

Nope it is not impossible. It is a HUGE change but not impossible. I make a lot of things from scratch now and if it is not I usually buy organic. Then we have a bunch of fruits. Unfortunately I can not get my family to eat enough veggies though. Anyway, I remember when I first started shopping for no HFCS, or artificial ingredients I would come home from the store grumpy and crying. It was hard but so worth it. For us my husband was the complete opposite of yours and said "my kid is not going to be on meds". So that made me even more determined to find an answer.

 

As for the testing our insurance does not require that we get a referral so I just went strait to an allergist. I was not sure if he does blood testing or not but I went to an alternative doctor for that. I would see if you have a DAN doctor in your area. They are more willing to look at alternative tests.

 

Now I honestly hope you find the answers for your son. I know how hard it can be. I think you are in the right place though.

[faith]

mom2ck,

gosh, I don't know what to say. I'm not sure that adding med after med is a good idea. If you feel the stratera was good enough, even though not perfect (don't think anything will be), I would just stay with that until you are able to get a handle on diet and supplements. Did you not feel the vitamin therapy/dietary did help at all? It does take some dedication and work at first, but soon will be second nature, even though it may be al lbut impossible to get totally clean AND total cooperation from your little one. BUT, it is certainly better than the alternative, which is a dirty diet full of artificial foods.

 

May I also say that I understand having the issues of ADHD, ocd and tics can be somewhat daunting, but I really do feel in my heart that adding these medications can just add to the problem, for they come with side effects that just may not be worth it. May I ask what part is the most troubling right now? Are you medicating for the ocd or tics, or just the ADHD? And is the ADHD that bad without the medication? It is my feeling that it will be less of a problem as he ages.

 

Faith

[mom2ck]

The reason we went back to meds was the tics. I have learned to deal with the adhd and ocd, even though hard at times. It is especially hard for my husband as he is one of these "because I said so" guys. Tonight my ds got upset because daddy didn't put the ketchup where it was suppose to be, then yelled at his dad. Of course, dad got angry back. So, I had to calm them both down and deal with the real issue. Most of the time I can do this. If you can calm him down and talk about it, then you can fix it. The adhd made it hard for him at school (kindergarten). Even though I spoke to the teacher almost daily things got worse. For one, she was a first year teacher and wanted to do things her way even though she told me she could make adjustments. Instead, she alienated him and frustrated him even more. His teacher coming up dealt with my BF son this last year who has sensory issues and autism. So, I'm optimistic this school year will go better.

The thing that really got to me was my son couldn't concentrate from all of the head nodding this summer to play baseball. Last fall he had problems in soccer and couldn't stay focused. This was the time we were trying vitamins. He loves soccer and looks forward to playing. It was apparent it wasn't working for sports or school.

I so want to do the vitamins and find something that works. But, the programs I see on here are unreal with the # of pills to take daily. My son won't and can't take pills without throwing up. So, a liquid or powder is needed. Yet if the liquid doesn't taste good he won't take it. We tried vitabase liquid focus formula. But no matter what I put it with, he wouldn't drink it. Plus it is supposed to taste citrus. He doesn't like orange juice. So, then we tried a powder from a chiro who does whole health. I hid it in his pb&j's, but then he caught on to a difference and wouldn't eat them. So, since nothing seemed to work, I felt my only choice was meds.

I hate seeing him like this. I hate seeing him not have friends. He says he has friends, but when at church 2 boys in his class actually ran from him so they didn't have to sit by him. He tells me he plays by himself because the other boys won't let him play with them. But, the girls are nice. This is so sad for a 6 year old to not have playmates at school.

We have thought about martial arts as a way to improve his self esteem and anger, but am afraid he will want to hurt someone or use his techniques. He already gets mad at his sister who is 4 just about daily and hits, punches, or whatever because she didn't do what he wanted.

After reading posts most of the night, I am realizing he has had even more tics not beforementioned. Wondering now if his stuttering occurence that came out of nowhere in Pre-k was a tic. Ugh, this is all so frustrating!!

[mom2ck]

Pamela Kay,

Tell me do you feed your child every meal? If not, who does in your absence and how do you get them onboard. During the school year, I am a teacher, athletic director, and I sell products for a home based kitchen tools company that I love. So, I don't always have time to fix supper and have to leave that to my husband or mom when she is watching the kids. Plus, my parents are junk food junkies with all the ice cream, chips, soda, etc. I have told my mom many times I don't want my kids eating it, but it still remains in the house. So of course they want it and get it when they are there. I love my parents and appreciate them helping me out with the kids, but I don't love their eating habits.

[faith]

mom2ck,

I certainly understand your frustrations, but after reading your responses, I am feeling that there may be alot more junk type food consumed by your kids? Yes, don't I know it is everywhere, and the only way I have been able to get a handle on it is to basically, over time, forbid candies and processed foods. This way, my son does get stuff, don't get me wrong, but at least it is way limited because of my constant vigilance. My son (now 9) has been saying (whenever I say no to something junky he wants to eat) "why can't I have a normal mom!

 

I really think you might be able to get at least some releif for him by point blank getting rid of as much of the obvious junkfoods like candies, commercial cake snacks, things with high fructose corn syrup (a biggie), caffeine, aspartame, artificial juices, and commercial foods with dyes in them (red #40, etc.). It is a huge task, but I thoroughly believe it will start the ball rolling. Your mother and husband must know what your son is going through right now, and you must let them know that this is what you are going to do right now, so they must stick by you and help you with this. You can find alternative snacks and foods at Whole Foods or Trader Joe's, and if you can't, then your son will have to do without for a time, at least to see if this makes a difference for him. Do the best you can, some is better than nothing. Also, look into some of the key supplements that many here use, such as magnesium. There's no once size fits all, you will have to do the research and trial and error. Many of the supplements can be found in capsule form, and you can empty it into a spoon of apple sauce or ice cream, and then chase it with water or other drink. My son balked at this for a time too, but I got tough and basically told him he had to take it, so we had to find a waly. Don't give up. Start small, and build from there.

 

Faith

[mom2ck]

Thanks Faith,

I have very limited junk food in my house...no chips, candy, soda,etc. However, I have noticed many things contain high fructose corn syrup and dyes. He does pretty good with eating fruit for snacks as he loves most fruits and carrots too. But, I know he still gets some in the cereal for breakfast and on the go snacks and syrup for his pancakes. Plus, there are probably others I'm just not thinking of right now. We grow vegetables in our garden, fish in our pond, and buy beef from a farmer. Our pork and chicken is bought at the store. We also eat deer, squirrel, and rabbit that we hunt. Yes we are country folks.

As for putting supplements in something, ice cream might work, but doesnt' it have dyes? This is another item not normally in my freezer because it is very fattening and has a lot of sugar...yikes. My son's texture issue keeps him from eating applesauce, jello, or mashed potatoes the things you would normally think of. He hates meds and hates taking them. However, I too just tell him we have to do it. This has backfired on me on more than one occasion when he threw up on me. But, I keep making him take them. I did the same with the supplements as well. It actually causes him much anxiety as every morning he tells me he is scared. I found his med mixed with just a little juice and put into a medicine holder works. He takes a drink of juice, the juice with med and then another drink. But, I still have to be hard on him or he won't take it.

BTW, the supplement he was on is Cyrofood powder by standard process. We still have lots of it as it is only 1/4 tsp 2x a day. Maybe I should start him back on it. Or maybe it should be upped in dosage as well. I just looked on Bonnies website and see the ts plus control is 10-14 capsules for his weight. But, if it works for the tics I would be willing to try it. Lord knows I have already wasted enough money on stuff that didn't.

[patty]

momtock,

 

Since your son has sensory issues, before giving any supplements, try to work on his oral sensory first. Otherwise, the anxiety & stress from taking the supplements may be counterproductive to his tics. There is a book called the Out of Sync Child & and the Out of Sync Child at play that you may find helpful.

 

In the meantime, you may want to stock the house up with food that your son can have, so you don't have to worry about him eating something that he shouldn't. Also, it is important to do this as a family.

 

There are ice-cream that do not have anything artificial in it. You can get it at wholefood or trader joes.

 

Pat

[mom2ck]

Pat,

Thanks for the advice. I always knew my son had issues with textures and also with certain touches. For instance he add a fit about socks and tennis shoes and they had to be just right. He also used to have a thing about his bedding. Plus, he is a picky eater because of textures and has been since he was a toddler. I contributed all of this to his ocd and not sensory issues. I looked at a book given to me by a friend who is an OT. I found a few things that were my son, but it didn't seem to fit him. I'm not much of a book reader, but will look into getting Out of Sync as it could possibly help my BF son with autism as well.

I also looked online for the nearest whole foods or trader joes and found some in the St. Louis area. When I go for a real shopping spree this is usually where I go. So, next time I'm there I will have to look into those as well. However, they are about 1 1/2 - 2 hours for me.

[mom2ck]

Oh, I just thought of one more thing. He sees a speech teacher at school because of his th and l sounds. She has been working with him on stimulation of certain mouth parts. This is probably part of that sensory too, isn't it? Again, didn't see the connection. Now I have my homework to do as I need to find those reports she sent home. Also, putting a call in today to dr. for past records. Want to see if there is a connection that I just purely missed. I have a file for him, but somehow that stuff didn't make it there.

[lfran]

If you want to try capsule based supplements, you may be able to teach him to swallow pills. I was able to teach my son at around age 5. The doc told us to get a pack of M&Ms (not the best choice if you're avoiding artificial colors, though ) and place them on the tongue like a pill would be and just keep practicing having an "ocean of water" wash the M&M down.

 

It took my son about 6-7 M&Ms and then he learned. Now he's 7 and he takes tons of supplements without any problem at all.

 

Hope this helps!

[ilovedogs]

Thanks Faith,

I have very limited junk food in my house...no chips, candy, soda,etc. However, I have noticed many things contain high fructose corn syrup and dyes. He does pretty good with eating fruit for snacks as he loves most fruits and carrots too. But, I know he still gets some in the cereal for breakfast and on the go snacks and syrup for his pancakes. Plus, there are probably others I'm just not thinking of right now. We grow vegetables in our garden, fish in our pond, and buy beef from a farmer. Our pork and chicken is bought at the store. We also eat deer, squirrel, and rabbit that we hunt. Yes we are country folks.

As for putting supplements in something, ice cream might work, but doesnt' it have dyes? This is another item not normally in my freezer because it is very fattening and has a lot of sugar...yikes. My son's texture issue keeps him from eating applesauce, jello, or mashed potatoes the things you would normally think of. He hates meds and hates taking them. However, I too just tell him we have to do it. This has backfired on me on more than one occasion when he threw up on me. But, I keep making him take them. I did the same with the supplements as well. It actually causes him much anxiety as every morning he tells me he is scared. I found his med mixed with just a little juice and put into a medicine holder works. He takes a drink of juice, the juice with med and then another drink. But, I still have to be hard on him or he won't take it.

BTW, the supplement he was on is Cyrofood powder by standard process. We still have lots of it as it is only 1/4 tsp 2x a day. Maybe I should start him back on it. Or maybe it should be upped in dosage as well. I just looked on Bonnies website and see the ts plus control is 10-14 capsules for his weight. But, if it works for the tics I would be willing to try it. Lord knows I have already wasted enough money on stuff that didn't.

I have to tell you that my son also wouldn't take pills. One of the moms here told me that she would open up Bonnie's capsules and roll them in peanut butter to disguise them. Her son did this for a year before he finally said, ok...let's try to learn how to take the pills. My son has a terrible gag reflex and throws up at the drop of a hat so I know what you're talking about.

To get started you may want to try the Kids' Calm by Peter Gillham to start increasing your son's magnesium intake: this comes in flavors that my son likes( I buy the adult Calm formula b/c it has a lemon/raspberry flavor that he likes). I do believe that if you have found some liquid vitamins that you can encourage your son to take them despite the fact that he doesn't like 'orange' flavor. I just tell my son to hold his nose and gulp it down and if he complains I say "tough, I'm the parent and you're the kid and I know what's best for you".

As for the ice cream: start buying Breyers as it has the least amount of ingredients especially the vanilla!

 

I just started this process with my son and have not started him on Bonnie's b/c of the whole pill thing. I'm taking things one step at a time. So, for now he is taking a small vitamin B tablet that is 25 mg and the kids' calm and a liquid magnesium/calcium supplement from Floradix and a liquid kids' vitamin formula also from Floradix. He loves the taste of the Floradix products so I stick with them despite their costs. I also give him a neurotransmitter support supplement 2x a day that comes in capsule form and he manages to get those down, but before he could swallow I would break the capsule open and dissolve it in juice, whatever his favorite was at the time.

 

I want to encourage you to not give up. Try your hardest to get your family on board with you. Find articles they can read about nutrition and how that helps with ADHD, tics, and anxiety. My dh isn't totally on board but he's slowly coming around and he at least doesn't give our son junk anymore and they both think twice before buying something at the store if I'm not with them like: What would mom say if I bought this???

 

Best of luck,

 

Bonnie