Celexa for stereotopy/stims/rep. behavs?

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Registered: 04-05-2003
Celexa for stereotopy/stims/rep. behavs?
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Thu, 04-06-2006 - 9:33am

Hello all,

The Yale Child Study Center is undertaking a large-scale study to test the efficacy of the SSRI Celexa (Citalopram) in reducing vocal stereotopies, repetitive behaviors and stims in children on the autism spectrum. We are considering trying this med for our 6yo son (outside the study) and I was wondering if any of you have tried this before and what the effects were (negative or positive). Our son started taking Abilify in January for aggressive behaviors and was improved, but the benefits turned out to be more from the initial sedating effect of the med, rather than the therapeutic effect. Once he started to get activated and somewhat aggressive again, we switched to Risperdal and it was awful... after one week we discontinued and he is currently med free. We are considering going back to a larger dose of Abilify (7.5 mg or 10 mg per day) or may try Celexa or maybe a combination of both. Just curious to get any feedback from parents who may have already gone down this road.

Thanks in advance,
Traci

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iVillage Member
Registered: 09-09-2005
Thu, 04-06-2006 - 10:57am

Hi


My ds is also aspergers and bipolar.

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iVillage Member
Registered: 03-26-2003
Thu, 04-06-2006 - 11:11am

We didn't have much luck with medications for my son. However, the one we did have the most luck with my daughter was an SSRI, though not that one.

My son did do well on a SSRI at first (Luvox). It decreased his OCD type behaviors nicely however, after about a year on it backfired adn I found that it can with some ASD kids. He became very anxious and aggressive and we had to take him off. He has been much better since.

Cait never became anxious or aggressive, she just got to an age where she would cheek her meds and toss them and really wanted to go without meds so we decided to work with her on taking her off of them (partially her choice). The one concern there is how long it took to get out of her system and how hard it was to get out of her system.

My kids are both med free for over a year. We have had just as good luck with diet and supplements that we did with medication. In many ways we have had much better luck with it.

The one thing to really watch for with SSRI's is when you decide to take them off of the med. It can be a VERY hard class of meds to withdraw from and there are warnings about the med and increased depression/suicide in teens. This is something to at least look into before giving the med. Even after Cait was completely off the med, which we did very slowly, it took her another 6 months before her moods regulated and she was a pleasant person to be around again.

Renee

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Registered: 04-05-2003
Thu, 04-06-2006 - 2:29pm

Dee,

Thanks for your reply... very interesting. My son just has a single dx of autism (I also have an 8yo son with Aspergers). A pediatric Psychiatrist is the one who prescribed the meds. You mentioned mood stabilizers... interestingly, my Dr. suggested a trial of depakote but I was too scared of the potential risks so that's why we are most likely going back to Abilify... I'm thinking 5mg was just not enough. She didn't increase his dose initially b/c she wanted to confirm that his perseverative behaviors (which increased once he started the Abilify) weren't a side effect -- that's when we did a trial of Risperdal and had to stop after one week. She also mentioned a third anti-psychotic as an option, Seroquel, but we passed on that as well. Is your son now on just Lithium or is he still on Abilify or Geodon as well? BTW, never heard of Geodon.
I worry about the mania that an SSRI can bring out... that is the last thing my kid needs.

Traci

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Registered: 04-05-2003
Thu, 04-06-2006 - 2:36pm

Renee,

Thanks for sharing your experience too. It seems that when you talk to parents, the SSRIs are quite problematic, yet MDs prescribe them so quick and easy! Medicating my 6yo was not an easy decision, but I see now from my own 'scientific' experiment (that is, his school staff neither knew he was starting nor stopping anything) that he was much improved while on Abilify.

Glad to hear your kids are doing well med-free... hope to say the same someday myself!

Traci

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Registered: 09-09-2005
Thu, 04-06-2006 - 8:12pm

Hi Traci,


Liam is currently on 900mg lithium and 160mg geodon.

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iVillage Member
Registered: 04-01-2003
Thu, 04-06-2006 - 8:58pm

Hi Traci,

Our 7 yr twins are PDD-NOS - have finally begun supplemening w/ vitamins and minerals, and it has dramatically affected their mood swings, irritability, anxiety, behaviors, aggression, everything. We thought it was just us noticing the improvements b/c we are the parents, and wishing it all to be true. But 3 weeks into every-morning supplementing, their special ed teacher called to say that Gareth (the more severely afflicted twin) had been a "different kid," and that she felt as if a miracle had occured. She has worked with Gareth for 1.5 yrs and said she has never seen him like this!! That was about 2-3 weeks ago, and we talked again yesterday and she said again how she is beside herself over how much things have changed for the boys, esp Gareth. He is able to function in the classroom at a higher level, and has not needed the behavior corrections or close one-on-one like he uese to. He is more focused and stays on task. I can't believe she is talking about Gareth! She said she tells everyone she knows who has a child w/ ASD what we have researched, tried and seen such wonderful results.

I HIGHLY reccomend the book "Children with Starving Brains" by Dr. J McCandless if you are looking for info on how much biochemistry plays a huge role in kids suffering from ASD, and other behavioral/neurological/learning disorders. There are piles of shudies showing how much these kids are less able to use nutrients from their food for normal neurological functioning, compared to neurotypical children. I ordered it from Amazon a few weeks ago and its full of really helpful info.

Best wishes,

meg




Edited 4/6/2006 9:00 pm ET by bluesky74
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Registered: 04-05-2003
Fri, 04-07-2006 - 8:11am

Hi Meg,

Thanks for the info... it is quite timely. My son was dx'd at 2 and at 2 1/2 we were getting started on the DAN protocol. We had all of the testing/labs done and started the GFCF diet. We added the supplements that were recommended (SuperNuthera and some other stuff I don't recall) and planned to move onto the rest of the protocol once the results were in. We wound up not pursuing things further because all of his testing came back within normal range. Even the diet has fallen to the wayside because after six months of the whole family having no infractions, we decided to challenge our son with adding the forbidden foods back in. Once we saw no change in him, we decided the restrictive lifestyle wasn't worth it for us. My son is 6 1/2 now and a completely different child. He went from a non-verbal, unrelated, stimmy little guy to a conversational, related, mainstream Kindergartner with excellent academic skills and emerging social skills. I credit this progress to the amazing ABA and RDI teams that we have tirelessly worked with over the last few years. All that said, however, he is a very high-energy, quite aggressive at times kind of kid (but with us, his brother and therapists only -- never with other kids or adults). Anyway, the Abilify has calmed him down and made him more available for everything. I know we need to do this right now, but I am simultaneously planning to re-look at biomedical interventions as well. We're taking him to a new DAN doctor (one of the gus who runs the conferences each year) next month and I want to see what he recommends. I do believe that these kids don't digest or absorb nutrients the same as others and my son has all the accompanying side issues -- severe food allergy (peanuts) and asthma. I will try restricting his diet again and I will try some supplements, but I don't believe in a lot of the other things... I've seen firsthand too many kids who go through the protocol with no improvement on the other side.
Thanks for the book recommendation. I am very curious about what you're doing with your kids -- if you don't mind getting specific, what are vitamins and minerals are they taking?

Traci

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Registered: 03-26-2003
Fri, 04-07-2006 - 10:44am

Well I am not Meg and we haven't done the DAN protocol perse. But I will give my 2 cents anyway. Rather I have done my own research and made changes according to what I thought would help my kids. Mostly because I can't afford DAN with everything else and I also have known lots of families who didn't see fabulous results from the protocol. It does for some but not all. I think that it all was a good start into learning what happens with the bodies of our kids but we aren't quite there yet with understanding.

Currently, I have found a no or low sugar/organic diet to work best and we supplement with Omega 3's, acidolpholus and digestive enzymes as well as a good multi.

I chose Omega 3's because of the behaviors and mood instability and there was research regarding those and mood stability. It is also nutrients that they were missing from thier diet as Mike does not like fish. Cait does now, but only within the past year.

I chose an organic low sugar diet for 2 reasons.
First, I think there is just too much processed chemicals in what we eat that are not natural and even natural food are grown in such a way that many of the natural nutrients are missing and chemicals abound. I think that the way we have changed eating in the US in the last 50 years has a part to do with the increase in autism. Notice we have an obesity epidemic and an autism epidemic. It is only my novice mom type thoughts but there ya have it. The Feingold diet has been being used for years with good results as well for kids with ADHD and the like. And giving them a more wholesome diet certainly won't hurt matters.

Second, we have always questioned whether or not ASD son was diabetic. He has had urine tests at the pediatrician to screen for it and they came out ok but we all know that regular medical tests can miss things that are on the border. He has had many symptoms of diabetes that have gone away with this diet as well as being calmer.

Digestive enzymes and acidopholus - I do think there is something to GFCF and am considering taking out the cassien in Mike's diet. Currently I am giving digestive enzymes with all meals with milk and it is helping. We have been giving acidopholus for years to help with digestive issues and they do help, we just needed more.

Renee

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Fri, 04-07-2006 - 2:01pm

I agree that DAN protocals can be expensive - jeez, we've probably spent almost $1000 over the last 2 mos on supps, lab tests and DAN Dr's visits! But I guess until there is an "official" ASD protocal we sort of have to experiment with different things... so far we have done the GFCF diet (for a month) then added digestive enzymes, but still limit the gluten & casein. This has been great - their lab tests came back showing signs of leaky gut so I am really glad to have the enzymes - keeping the kids GFCF was challenging... but limiting the wheat and dairy has not been as hard since it is better than having none of it at all. The boys were pretty upset not having their "staples" ! It has worked wonderfully now though - since they are very motivated by rewards I tell them that there will be no more wheat or dairy if they can't stop whatever behavior is going on ;) Works like a charm, even though I know its kind of mean of me. But whatever works with these kids, we'll do it - that past 7 yrs have been such a nightmare, and seeing things improve the way they have, and how its helped our entire family, its just so worth it.

Anyway, the supps the boys are currently on (according to their lab results)- we give them every morning:

Liquid minerals & vitamins (1.5 tbsp in their cranberry or orange juice)
Also added into their juice are 3 drops each of: zinc, chromium (Gareth), selenium (Duncan), and Molybedenum (Duncan).
Each kid takes a multivitamin, folinic acid, and fish oils (lemon chewable kind). Duncan will do even the large multi's and fish oils, but Gareth has a harder time w/ the huge pill and does NOT like the fish oil. So I squeeze the oil into his juice when he's not looking, and give him the Gummy Bear vitman (from Whole Foods) instead of the huge pill.
Duncan is on diflucan (generic name is fluconazole) for yeast overgrowth (according to urine analyses).

Then, every 3 days we give them MB-12 injections - we numb the area on the upper quadrant of their bum w/ lidocain and wait for them to fall asleep, then inject. I believe this alone has made the biggest difference in their ability to express themselves verbally, and keep the focus and mood swings under better control.

Its a LOT of work keeping up this schedule, but hopefully it won't be forever - we are planning to begin chelating w/ TD-DMPS next week. Going to the DAN conference tomorrow, and esp looking forward to hearing Dr. Buttar explain more about this chelator and his protocal. We will not be doing the every-other day administration however, which is what he calls for. We will be doing the Andrew Cutler protocal of every 8 hrs for 3 days on, 11 days off, starting the first few rounds w/ 1/3 of the dosages... once the metal issues are more or less resolved (expecting a yr's worth of treatments), hopefully the boys will be able to utilize these nutrients better from the foods they consume.

Btw we are also doing mostly organic, dye-free, high-fructose corn syrup-free, and partially-hydrogenated-free. Lots of label reading!

HTH,

Meg

Edited 4/7/2006 2:04 pm ET by bluesky74




Edited 4/7/2006 2:07 pm ET by bluesky74
iVillage Member
Registered: 04-05-2003
Fri, 04-07-2006 - 4:21pm

Renee and Meg,

Thank you both SO much for the details... it's very helpful as I begin my journey back down the biomediacl road!
I do agree that our nation's food supply, how it is grown and processed, has had a negative affect on us all... I heard a great analogy once on this subject -- they likened kids on the spectrum to the canaries that would be sent into coal mines to determine if the air was safe. A lot of our kids' symptoms are in essence, the dead canaries, and if the general public doesn't recognize the warning, more health concerns across the board are sure to crop up.
Well, I'm looking forward to what our doctor will recommend next month at our visit.

Traci

P.S. How do you handle all of the food restrictions and supplement administering when on vacation? Even if my appt. was sooner, I think I would be waiting to start anything until after our Disney trip next week! But there is always the next trip to plan for, so I'd love to hear how you manage!!!

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