Anyone with Advice pls read

[airbucket]

I apologize that this is long and it is about medication and i know that this is not a medication forum but rather an alternative treatments forum and i understand and respect that, however the reason i am going into all the below detail about meds is that i am hoping someone who USED to be in my shoes (giving their child meds and no longer doing so) will read this and understand. Thank you -

 

I am still fairly new here but i am compelled to post this and see if anyone has any comments pls. Briefly, my son is 8. Diagnosed with TS last march 2007. Not knowing better, placed him on Abilify at that time. I will say that the tics (which at the time were bad) dissapeared and overall my son was like a different child with the improvements we saw. I thought, oh these meds are not bad! They help! I think i was wrong. I have joined this forum because i am slowly planning on moving away from this synthetic garbage to alernative, natural treatments and diet, etc. So far just having read this forum, i learned a lot and bought my son an excellent multivitamin plus a magnesium with calcium supplement and removed all major food offenders like candy and artificial colorings. Of course, as finances alllow, we have a long way to go, there are many things i have read about on these forums that i wish to try including GF/CF. However here is my current issue -

 

about 2 months ago out of nowhere my son started "slipping" - symptoms were coming back slowly. A fw tics, a few moods, more anxiety (the anxiety was possibly my sons biggest issue) until finally we realized the Abilify was not "working" at all any more. not only were we back to square one, but there were even some new symptoms that were worse. These symtpoms the psychiatirst said were mental tics. Anyway, immediately i thought lets take him off this junk, but frankly i chickened out because my son was having troubles in school and i didnt want ot make it worse by jerking him off this medication, i thought maybe things might be even worse and i dont want to disrupt school any more than it is already. Anyway, describing what was happening to the psychiatrist, he told us to add a new med Inversine to the mix. He explained that inversine was harmless, a blood pressure medication that worked to just calm his system down. i thought, ok that doesnt sound evil, might as well try. He has been on that about a week, i have no idea if its doing anything because of all the ups and downs we've had over the last month. The psychiatrist was literally stumpted by the abilify not working any more, though he insisted it wasnt that it wasnt working! anyhow, he increased the dose, things stayed the same and some days were worse. Finally my son had a day that was horrible i called and he said to stop the abilify for one or two days because "too much dopamine had built up" in his brain. I did that the next morning, no abilify and lo and behold he had a really good day with minial to no problems. The 2 nd day of no abilify however was bad again!!!! I was/am baffled! I called again and the doc said that he has "bottomed out" and to give him a tiny bit, about 1mg in the eveing from now on. I did that last night and lo and behold again, he had a great day today, albeit with tics.

 

I wish of course i had bitten the bullet and taken him off the abilify at the first sign of things going wrong. Now he is on two meds! albeit a very low dose of abilify. My plan WAS to keep things status quo and over his long christmas break, wean him off this meds and get him to a holositic/DAN type doctor and begin non medicine interventions. Now i am wondering if i am a fool for waiting. One of the issues of course is that i do not at this moment have the money to see a DAN doc and buy all manner of expensive supplements etc. I didnt feel it was right to take him off the meds without having another plan ready to go and try. I am so confused and it is killing me ot see my son on this rollercoaster ride! it is a crapshoot how he will "be" tomorrow and if i will even be able to know what the problem is. I worry that i will be being a bad mother taking off the abilify as the psychiatrist likes to remind me how much it used to help....also, i have a read where meds with TS stink because there is more ups and downs than any other condition being treated with meds.

 

again, i am sorry this is so long but i am desperate. Im not just going to go from neurologist top psychiatrist to neurologist to have them all tell me the same thing - "he has TS. He needs meds. Just because there's a backslide doesnt mean the meds arent working" etc. ANYONE with any advice?? Thank you so very much.

[faith]

Airbucket,

I wish I could help re the meds, I don't really have any knowledgeable experience on that, but I'm sure someone will. Sorry you are so up in arms about all that, but really you have only been researching for a few weeks, right? It will take a little time to formulate something that will help your son. You are taking all the right steps. The supplements you are starting with are a good choice for starters. The dietary restrictions (removing junk) I believe has to help in some area, it may take a week or two more. Could you try and restrict certain food groups one at a time? Have you tried just removing dairy first? That seems an easy one to eliminate first, i.e. milk, ice cream, cheese, pizza) and think it may help some of the behaviors. The first naturopath we saw was big on "no dairy". I reccomend you try and find the book "Is this your Child" by Doris Rapp. It deals with childhood behaviors and the relationship to allergies and such. It will give you some good insight.

 

Could I ask, as far as why your son was put on the abilify, was it mostly because of the tics, or the other issues that came with it. If it were not for the other issues you described, were the tics that big an issue, I mean if it were just that, and maybe slight other behavioral as many of us describe here in our kids, would the doctor still have recommended the med, and would you feel he needed it? The med abilify I don't think is just for TS and tics, I believe the med of choice to begin with would be clonodine or tenex (that is what our DAN doctor said) as they are with the least side effects. So, I think what I'm trying to say is that, yes, I understand you are dealing with some other issues as well, and I don't think you should beat yourself up for agreeing to the meds, there is no way you could know how to treat all this yourself. When you find the right protocol for your child, you can then decide when and how to wean off of the meds if you feel they are causing more harm than good. ... Is it possible for you to find a naturopathic doctor where you could have at least a consultation visit and some recommendations for how to treat--they may be able to at least give you some good insight and guidelines to begin with and possibly the type of testing that would be beneficial. You don't necessarily have to follow through with anything if finances don't allow, but at least it would be a good reference.

 

Airbucket, I don't know if I'm helping at all, but I really thing you are off to a good start, I know you are frustrated with your experience so far, but I really do believe that with a little more research and just finding a good practitionor to guide you along a little, you will find answers....Not, sure did you say you were going to have some urine type testing, and if so, did you yet and please let us know the results.

 

Hopefully, someone will have more knowledge on how to handle the med situation. Don't worry, answers will come,

 

Blessings

Faith

[Chemar]

Airbucket

 

I really feel for you

 

all I can say is that my son has genetic TS and we were given the same story about him needing meds etc etc

 

however, the worst his tics etc ever were was when he was on the meds.....and we tried a number of different ones over the course of a year.

 

so

I guess I am biased, but our experience was that it wasnt till we took him off the meds that we started seeing an improvement, and started seeing him respond so well to the supplements and dietary changes etc

[amy1]

We were on prozac for my daughter's extreme anxiety. the tics continued (were weren't on a med for the tics) but the anxiety was SO much better. we were on the prozac and i wasn't aware of any supplements at that time. Then, when i started her on the magnesium citrate, coromega and a vitamin with minerals (and cleaned up her diet, although it's not that clean) we saw the tics decrease significantly. We went to NYC on vacation for a week and i got to the airport and realized i forgot the prozac. i called her psychiatrist and they said it wouldn't be a big deal if she misses a week. when we got back i weaned her off the prozac as i really felt like i wanted to try the supplements only. honestly, the prozac helped her separation anxiety/mood swings---BUT, i'm persisting and will check with my doctor at UF when we meet in a couple of weeks. i agree, it's so expensive for the DAN dr., etc. there's a great osteopath nearby but the eval alone could be $2000. i'm not convinced that i need to be more than i'm doing right now...keep researching and researching. hang in there!!!!!!

[fiore]

It's been a very long time since I've posted, but your situation was very similiar to ours. Brief background; my daughter now 10, was on 2.5mg of abilify for 1 year. She was also taking Strattera as well for a bout 2 1/2 years. I too, at the beginning thought the abilify was working so well, until, 9months later during spring, she had her usual terrible breakout of her tics. They were so bad that she was self torturing herself and couldn't stop. This was why we initial took the abilify and thought it had stopped it. It appeared that for some reason, this bout seemed to be seasonal. Every spring for the past 4 years this has happend. Before taking the abilify I researched holistic approaches but with mixed results, so it was just the next step to try meds. After this last springs' bout, I chose to chuck the meds and see a DAN doctor-we had nothing to lose. He saw her at her worst. My insurance covered 60/40, so at least I had some coverage. On our first visit, he recommended that we try a gluten free, dairy free, sugar free diet, until the test results came back and showed what foods she had a high reaction for. One month later, the tests showed she had reactions to milk, eggs; white and yellow parts, yogurt, sesame seeds. Did I see a change during the first month? Yes, but I could not honestly say it was because of the diet, since her spring attacks last for about a month or so, and I told the doctor that. After the second visit, and taking the additional supplements he recommended, I noticed a difference in what I call her normal tic stage. This to me was HUGE! Its been 5 months now and her tics are still less severe than her average.

 

The DAN doctor made such a difference than me doing it on my own because of the testing and knowing what she was deficient in. This in the long run saved not only money but TIME! He also made himself available via the phone for questions or changes in dosage/supplements. She is on 4 different supplements that have really changed her life. How will she do this spring? Your guess is as good as mine, but if her normal tics are any indication, I think we will be better off this time around.......god help us if I'm wrong.

 

My advice is to do what ever you have to, and go to the DAN doctor as soon as you can. Remember results will not happen over night but at least you will have started the ball rolling.

[faith]

fiore,

so glad your experience has taken a turn for the better. Could we ask what supps the DAN doc recommended? Is she still doing gluten and dairy free diet, or just avoiding what the tests showed?

 

Thanks

Faith

[Ronnas]

I just wanted to say "hi" and let you know that you are not alone. My son had a sudden onset of tics 6 years ago and we are proof that things can get so much better with time and knowledge. We had no idea what to do at the time and although it is hard to believe now, in 2001 when my son's tics began the internet just was not as big a deal and really there just wasn't nearly as much information. About a year into my son's ordeal I found braintalk and then ACN and that is when we reallt made some head-way with my son.\

 

I am an RN and worked with and respected many of the pediatricians and neurologists that my son saw. The only recommendation was meds. We started with Orap (horrible med) and at the time it reallly was so nice because FINALLY my son's body was still, I can still remember the relief of seeing him lay in the hospital and not seeing his body tic. The Orap worked really well for awhile (a few months) and then as you have said, it stopped working as well. The doctors recommended to increase the dose...well over the course of a summer my son gained about 20 pounds and turned into a zombie...it was HORRIBLE and I could not believe what we had done to our son.

 

On the recommendation of the doctor we switched to clonidine (this should have been the first med we tried, NOT a major drug like Orap)...anyways, the clonidine helped a bit but also made him way tooo sleepy so we stopped. It was about this time that my son was having nerve, skin, and muscle biopsies looking for neurodegenerative and metabolic disorders because his symptoms were so severe and he developed an infection at the nerve biopsy site and he was started on the post-op antibiotic of Keflex...I am not kidding within a day or two all of his symptoms disappeared and I discovered the interent...I typed in penicillin and tics and nearly died when I read about PANDAS...this was my son!

 

Antibiotics were not the only answer for my son, he benefitted greatly by removing dairy, chocolate and eggs and basically cleaning up his diet, we used various supplements, and essential fatty acids, and probiotics.

 

It was a long road but I can tell you at age 11 years old, he is doing well. Minimal tics, active in sports, some good friends and our biggest challenge now is learning disabilities. Hang in there. You will know what the right thing to do is. I don't think it is a bad thing to wait till Xmas to wean meds so that there is less disruption at school. For now you could concentrate on adding some vitamins and changing the diet. If you make too many changes at once you will not know what is helping, not helping or making things worse...it's not a sprint, but think of it as a marathon...the end will come. Write everything down, and only make one change at a time...add a multi-vit, wait 4-5 days, add the mag-cal, wait 4-5 days, remove dairy, wait a week, etc...

 

I made the mistake years ago of jumping in and making too many changes at once b/c I was so desperate, only to start over SLOWLY.

 

Hang in there.

[fiore]

fiore,

so glad your experience has taken a turn for the better. Could we ask what supps the DAN doc recommended? Is she still doing gluten and dairy free diet, or just avoiding what the tests showed?

 

Thanks

Faith

 

She takes 4 1200mg phosphatidyl choline complex, 1 600mg butyrate, 2 300mg St. John's worth, Glutathione in a cream form and 4 50mg 5-htp. This along with a low sugar, minimal gluten, dairy free diet. Remember this works for her and the same combination may not bring the same results for your child. That is why the testing that the DAN doctor does is so important. Please don't try and duplicate what she had because the level of 5 htp my daughter takes is very high, but because her serotonin levels are so low, the doctor has ok'd for her to this amount. If you have any other questions, don't hesitate to ask.

[kim]

fiore,

 

What great info/advise.

 

Thank you so much for reporting your sons progress.

 

Can you tell us what tests the DAN did, and where they were ordered from? That's always helpful.

 

Kim

[airbucket]

wow thank you all for the replies. the information has been great and i appreciate it! i have been giving him the multi vit which i do recommend based on the ingredients and quality. it's callesd Kids and Us food based minis by Mega Food. It is gluten free as well. hard to say the effect that and the magnesium may be having as i believe these meds have him so up and down everyday. he had a good, tic free, mood free day today and was happy but at night he got up from bed and was hysterically angry, he trashed his room, was saying horrible things - when i got him back into bed i noticed a spotty red rash around his eyes and mouth and nose. i had given him the smallest dosage of benadryl as i was told by a parent it was good for occassional sleeplessness and couldnt hurt if he had any food allergies. Normally he is never freaking out like this. In bed his tics were crazy he couldnt even lay down. After a while it slowed enough and i left the room.

 

at this point i thnk i am going to tell the psychiatrist that i want him off one or both of these meds. This nighttime manic epsidoe happened once before 2 nights ago along with the wierd rash. I thank you all again and i will post the results of the labcorp UPPA test, we have to retake it because they exposed the container.