for those with young children on meds......(sorry long)

[SweetMissMagnolia]

oh man....Zachary is 8 and has asperger's and adhd and anxiety issues. I struggled A LONG LONG time with the decision to medicate :chillpill: or not for the adhd/anxiety issues. In one therapy session my dr said well alot of kids take it for a little while (few years maybe) untill they are old enough to know how to control their issues/anger/tantrums and then they are able to come off the meds. So I said "ok" we'll give it a try--believe me I was at my wit's end (I could tell you some WILD stories about some tantrums!!)....started off with vyvanse and I was able to "hide" it in yogurt smoothies but he found out one day and then getting him to take it got to be a fiight. We finally got him comfortable taking it and then side effects started (chest pains-tummy pains-not eating/losing weight)--ok tried another medicine I think it was strattera---worked GREAT for us but this time I couldn't hide the pill so well and he would literally FREAK OUT and have anxiety attack when it came time to take the medicine each morning....finally got him settled taking it and again side effects (chest pains-tummy pains).....ok another medicine---INTUNIVE--small pill (about the size of a mini mm)--and we got our therapy dr to help us work with him about taking a pill and not having a panic attack....took it great for a week and then this past saturday he had a HUGE anxiety meltdown and again sunday same thing--two days no meds.....husband and I have talked and we are just about at our wit's end---we have come to the conclusion that unless there is another form (patch) of medicine that is not a stimulant (amphet.) that we are not going to do the medication route again. It's just wearing on us and kiddo too much. I'm going to call his dr this week and discuss it with her but I'm pretty sure our mind is made up on this issue......anyone else had to deal with anything like this???? I go from feeling like the worst parent in the world because we "make" him take the meds to feeling like a push over because we're "letting him have his way" in not taking the pills.....if that makes sense....I'm all over the charts with emotions-going to talk to my pastor this week--she can always make me feel better and seen things a different way--I went to church yesterday and just felt so much better about the issue.......THANKS for listening to my pity party...... :tongue_smilie:

[Guest dreamgig]

I could have wrote that post. Sounds just like our family, just hang in there you aren;t alone. Every decision we make as parents is the best decision we can in the moment.

[Geo]

It sounds like his anxiety is the bigger issue. Has that been addressed? It was the first thing our ped suggested we considered meds for...even before the adhd, because stimulants can exacerbate the anxiety issues. Our 9yods anxiety was pretty signifigant-multiple meltdowns daily. So, he takes zoloft (liquid) in a little orange juice at night. We started seeing results within a few days. Not long after that he saw a developmental ped for a formal dx of adhd. He did have a terrible reaction to his first trial- 20 mg Vyvanse! He is now on a low dose of long-acting Focalin (10mg) and has had no side effects to speak of. Maybe if the anxiety were treated, you may be able to see results with stims or a non/stim at a lower dose and avoid side effects. The stims transformed his learning abilty! I was on Straterra, it may not be a stim...but it certainly felt like one! I always felt a little "ancy" and jittery on it. I ultimately quit because of side effects...it made me sweat like a piggy. Please understand, I'm not trying to challenge your decision. You know what is best for your son. It's just that I saw so many references to anxiety and no mention of it being treated, so I thought I'd touch on that.

 

Geo

Edited May 31, 2011 by Geo
added info

[jewellsmommy]

:grouphug: I understand med frustrations! We are new to adhd/anxiety issues since getting ds. He came to us on a patch (stimulant). He should not be on stimulant forms! Our doc confirmed that and put him on intuniv. The Intuniv (also a blood pressure med) dropped his blood pressure severely once we hit 3mg. So now he is on nothing until he sees a psychiatrist in July! Our pediatrician will not prescribe a stimulant for him and, as you know, there are only 2 non-stimulants. His adhd is horrible. He has very little working memory, really lacks impulse control, and his mind is all over the place! I can handle the hyperness. His anxiety leads him to pull his own hair out, though.

 

It seems like your ds's anxiety issues are the first to focus on. I wish you luck! :grouphug:

[Misty]

Well, you certainly don't HAVE to medicate him as I'm sure you are aware. My 8yr old daughter has Asperger's, RAGING ADHD, and severe OCD.. We control it all through diet and supplements.. She was on Zoloft for a while because her OCD was quite severe.. But she is now off the Zoloft and doing great! Her focus is also addressed through supplements (she gets P5P in the a.m.. B12 & fish oil in the evening. No side effects from any of it).. Her diet is 100% free of dyes, additives, preservatives and other crap.. She is also 100% gluten free, 99% casein free, and 99% soy free (after testing confirmed sensitivities to these foods).. Gluten sends her into an instant regression of severe OCD, raging ADHD (seriously, RAGING, CRAZY, CLIMBING THE WALLS ADHD) and stimming like mad. She is so calm when her diet is clean, it's just amazing. Almost zero issues. So easy to work with and she does her school work every day without issue.

 

I would be happy to help with food sensitivity testing or supplement recommendations. Inositol would be a good one for the anxiety.

[SweetMissMagnolia]

THANKS for all the above replies and advice....we are trying to keep dyes out of his diet....it's sooo hard cause it's in just about everything.....I am going to make a call to his therapist tomorrow and talk to her about what's been going on and maybe she can come up with something different for us at our next appt next week....something new happened today--he was in the kitchen making noodles with grandpa and grandpa turned the stove off and left the room after giving him the noodles....zach turned the eye of the stove back on and rubbed a wooden spatula over it and it was just about to catch on fire when we found him and scolded him good-explained that playing with fire can be dangerous and deadly....thought we got the message across---a few hours later we catch him doing the same darn thing......my nerves are shot today....I'm just at my wit's end..... :confused:

 

**anxiety issue---she was hoping the intunive would help some with the anxiety issues.....but guess not---I will definately discuss the other options with her......

[Geo]

Well, you certainly don't HAVE to medicate him as I'm sure you are aware. My 8yr old daughter has Asperger's, RAGING ADHD, and severe OCD.. We control it all through diet and supplements.. She was on Zoloft for a while because her OCD was quite severe.. But she is now off the Zoloft and doing great! Her focus is also addressed through supplements (she gets P5P in the a.m.. B12 & fish oil in the evening. No side effects from any of it).. Her diet is 100% free of dyes, additives, preservatives and other crap.. She is also 100% gluten free, 99% casein free, and 99% soy free (after testing confirmed sensitivities to these foods).. Gluten sends her into an instant regression of severe OCD, raging ADHD (seriously, RAGING, CRAZY, CLIMBING THE WALLS ADHD) and stimming like mad. She is so calm when her diet is clean, it's just amazing. Almost zero issues. So easy to work with and she does her school work every day without issue. I would be happy to help with food sensitivity testing or supplement recommendations. Inositol would be a good one for the anxiety.

 

 

Yes, I'd say I'm well aware. I have a 28yods that is adhd and began looking at what we eat when we followed the Feingold in the 80's. We don't eliminate the salicylates (never saw a connection), but we do eat clean. No dyes, preservatives, additives. Organic when possible. I cook from scratch, and grow most of our vegetables and even some fruit organically. I tried the fish oil...short of literally sitting on him and forcibly shoving it down his throat, it won't go down...and can even come back up, iykwim. No pill swallowing either. Sensory issues make tastes and textures a huge obstacle with him. Sadly, I have absolutely no family support (read that: dh) for the gluten-free, casein-free, soy-free trial. Maybe someday, but it's not a battle I can fight and win on my own.

 

 

Geo

Edited May 31, 2011 by Geo

[SweetMissMagnolia]

we are doing some of feingold....zach's just recently started eating meats-well bites of like hotdogs or chicken--apple juice doesn't agree with him and I only allow him to drink sprite on rare occassions and he mostly drinks water throughout the day-surprised me at how quickly he adjusted to it and now it's just second nature for him to get a glass of water.....I tried the omega gummies and those taste so good I'm getting me some LOL fish oil pills don't agree with me....I am using the focus factor supplements along with his regular vitamins.....

[mom4peace]

Sympathy coming your way from another mom of a young (9) Aspie with anxiety and ADD. After increasing anxiety and worsening tantrums lasting up to 3 hours several days a week, I threw in the towel and saw psychiatry. A very low dose of Zoloft (10 mg liquid) made a significant difference. Higher doses bothered his stomach, but the low dose (now 12.5 -- half a tablet, since he swallows pills) doesn't.

 

It's not perfect or a cure-all. His ADD is worsening with age and bothering him significantly, and that's likely the topic of our next visit to psychiatry. Having anxiety is hard on your attention, so treating that first may be in order for your child as well. It's not easy to make the decision to medicate your child, that's for sure.

 

As for alternatives, I'm in the highly skeptical camp when it comes to diets and multiple supplements. Aside from avoiding dyes and keeping the sugar level down, we don't do much other than common-sense healthy, whole foods.

[ondreeuh]

I mean this with respect - your daughter's reaction to gluten and other ingredients may mimic ADHD, but it is not ADHD. ADHD is not caused by dietary reactions. I'm glad you are able to control your daughter's food sensitivities and remove her symptoms! However, it's inaccurate to say that ADHD can be cured with dietary changes.

[ondreeuh]

My older kids both have some degree of anxiety and ADD/ADHD. My daughter's anxiety finally abated after she was treated for ADD and her symptoms were under control. The ADD actually caused anxiety in her because she couldn't even feel in control of her mind and it was very disconcerting. Once she was in control, the anxiety went away.

 

My son has been treated for ADHD for years and so I can't say which one affects the other, but when he is off meds (early morning, late at night) he is more anxious.

 

Just some anecdotal evidence that anxiety doesn't necessarily rule out stimulant treatment.

[SweetMissMagnolia]

talked to both drs today and the psychologist can't prescribe meds so she told me to call and speak with pediatrician---he wants us to try low dose daytrana patch.......still kinda ansy about it but haven't ruled it out all together-I'm at least going to get the rx filled (have free vouchers).....have to talk to hubby and do some research on the patch and do some heavy thinking later...................

[mamatohaleybug]

Treating these issues is so tricky. I feel your pain.

 

My daughter (8) has ADHD and anxiety and major sensory processing problems (along with organic brain issues). No AS diagnosis but very AS seeming. :001_huh:

 

We finally hit our limit in January. Up until then I wouldn't consider meds but at that point things were so hard, we didn't see any other options. Have tried Concerta, Adderall (huge disaster), Ritalin and now Metadate CD. The Metadate CD is helping. Actually, the Concerta was great but the side effects were too severe. I'm seeing some of the same issues with the Metadate. Not sure where this road is taking us but she does have a psychiatrist now so I feel a bit better.

 

We added risperdal this past week and I'm seeing big improvements with that. She's only on half of the dose so far and I'm not sure if I'm going to bump it all the way up. We haven't had a single tantrum or explosion in 4 days which is nothing short of a miracle.

 

I think the anxiety is the worst part for us because everything in life is impacted by her anxiety. These two drugs are helping her, and maybe indirectly being more in control will help her not feel so anxious. I guess time will tell. I'm watching the anxiety levels really carefully.

 

I wish I had advice for you. I can commiserate though.

[SkateLeft]

Hang in there. :grouphug:

 

It can take a while to find what works best for your child, but the process is tough. I agree with the posters who suggested that you consider dealing with the anxiety first.

 

My youngest (my only special needs kid) has been on medication for three years, starting when he was hospitalized at 2. He first took Fluoxetine (Prozac) until last summer, and currently takes Trazodone. Anxiety is just one part of his larger issues, but dealing with it has enabled us to work on the other things more effectively. His dosage is mild enough that we still deal with some OCD and anxiety, but the panic attacks are controlled for the most part. (He does not have ADHD, though we did try an anti-anxiety med once that is commonly used to treat ADHD, and it gave him bad stomach aches.)

 

While dietary changes, allergy testing and supplementing can all be helpful for many kids, there is no single cure for mental health issues.

[Misty]

I mean this with respect - your daughter's reaction to gluten and other ingredients may mimic ADHD, but it is not ADHD. ADHD is not caused by dietary reactions. I'm glad you are able to control your daughter's food sensitivities and remove her symptoms! However, it's inaccurate to say that ADHD can be cured with dietary changes.

 

Her ADHD is not cured.. She still has focus problems.. But she is much more manageable. My daughter has a clinical diagnosis of ADHD-combined type, Asperger's, OCD, NVLD, & SPD. So please don't tell me my daughter does not have ADHD. I live with this child and she most certianly does.. We tried public school for two months and she couldn't even function there. The teacher, special ed director, and principal talked me into medicating her, which worked VERY well for her, but had a lot of side effects. She does much better at home and while she doesn't sit and do school all day, I am able to get her to sit for a few minutes at a time and do some learning. Before diet, she was a stimming, raging, tantrum-throwing child with severe OCD.. Her life was consumed with OCD, severe hyperactivity, and constant stimming. ZERO learning took place at that time.. Now she is MUCH calmer, but I still have to work with her on the attention issues.. I never said she was cured.. Just significantly improved (which is very true).. Mostly with the hyperactivity part of it. My daughter DEFINITELY has ADHD, no doubt about it.. Do some research on gluten and the effects on the brain.

Edited June 1, 2011 by Misty

[happyWImom]

Well, you certainly don't HAVE to medicate him as I'm sure you are aware. My 8yr old daughter has Asperger's, RAGING ADHD, and severe OCD.. We control it all through diet and supplements.. She was on Zoloft for a while because her OCD was quite severe.. But she is now off the Zoloft and doing great! Her focus is also addressed through supplements (she gets P5P in the a.m.. B12 & fish oil in the evening. No side effects from any of it).. Her diet is 100% free of dyes, additives, preservatives and other crap.. She is also 100% gluten free, 99% casein free, and 99% soy free (after testing confirmed sensitivities to these foods).. Gluten sends her into an instant regression of severe OCD, raging ADHD (seriously, RAGING, CRAZY, CLIMBING THE WALLS ADHD) and stimming like mad. She is so calm when her diet is clean, it's just amazing. Almost zero issues. So easy to work with and she does her school work every day without issue.

 

I would be happy to help with food sensitivity testing or supplement recommendations. Inositol would be a good one for the anxiety.

 

My dd has anxiety & OCD, and we are currently seeing a CBT and she is on a low dose of meds. We do fish oil, but not B12, and I was wondering what dose you do for it? Also, what is P5P?

 

My other question concerns diet. How do you all get your dc tested for sensitivities??? Whenever I've brought it up to her ped. it always comes back to allergy testing, and I say "No-not allergy, sensitivity!" I thought there was a blood test or something. I know some people try the whole elimination diet thing, but I feel like that would take us forever!

 

Btw, do you find it super expensive to have the restricted diet, and does your whole family follow it?

[Misty]

My dd has anxiety & OCD, and we are currently seeing a CBT and she is on a low dose of meds. We do fish oil, but not B12, and I was wondering what dose you do for it? Also, what is P5P?

 

She takes 1000mcg of Methyl-B12.. It's a little tab that she sucks on.. tastes good. P5P is B6 & magnesium.

 

 

My other question concerns diet. How do you all get your dc tested for sensitivities??? Whenever I've brought it up to her ped. it always comes back to allergy testing, and I say "No-not allergy, sensitivity!" I thought there was a blood test or something. I know some people try the whole elimination diet thing, but I feel like that would take us forever!

 

We did food sensitivity testing through Great Plains Labs http://www.greatplainslaboratory.com . You need the IgG food allergy panel which tests for 93 different foods. You will need a physician signature (your pedi can sign if she is willing) OR you can use the MyMedLab option (look for it on the Great Plains site).

 

Btw, do you find it super expensive to have the restricted diet, and does your whole family follow it?

 

Yes, I won't lie.. It is expensive at first.. Mainly because you are buying things just to try them... But eventually, you learn what you like and only buy those things.. And you get better at making a lot of it from scratch. The cost starts to go down. We have 5 people in our house who are gluten free (all my kids and myself.. I have celiac disease).. When my husband comes here to live (he's military and stationed elsewhere right now) then he will be gluten free while in the house as well.. He can eat gluten outside of the house if he wants.. But no gluten will enter this house.. My 8yr old daughter is too sensitive and we just can't risk it (he is very supportive of us being gluten free, BTW)

[happyWImom]

She takes 1000mcg of Methyl-B12.. It's a little tab that she sucks on.. tastes good. P5P is B6 & magnesium.

 

 

 

 

We did food sensitivity testing through Great Plains Labs http://www.greatplainslaboratory.com . You need the IgG food allergy panel which tests for 93 different foods. You will need a physician signature (your pedi can sign if she is willing) OR you can use the MyMedLab option (look for it on the Great Plains site).

 

 

 

Yes, I won't lie.. It is expensive at first.. Mainly because you are buying things just to try them... But eventually, you learn what you like and only buy those things.. And you get better at making a lot of it from scratch. The cost starts to go down. We have 5 people in our house who are gluten free (all my kids and myself.. I have celiac disease).. When my husband comes here to live (he's military and stationed elsewhere right now) then he will be gluten free while in the house as well.. He can eat gluten outside of the house if he wants.. But no gluten will enter this house.. My 8yr old daughter is too sensitive and we just can't risk it (he is very supportive of us being gluten free, BTW)

 

Misty-

Thanks for the info. :001_smile:

 

I really want to do the food sensitivity testing, because my poor dd has been suffering for too long.

[Misty]

I really want to do the food sensitivity testing, because my poor dd has been suffering for too long.

 

Let me know if you have any questions. Check to see if Great Plains files with your insurance.. if they do, really push for your pedi to sign for the test instead of going the MyMedLab route. If you go with MyMedLab, then you can't file with insurance.. We have military insurance (Tricare) and they paid 100% of testing for all three of my girls.

 

BTW, you might try Inositol to help with her OCD. 5-HTP would be another option.. but only if your daughter is not currently taking any meds.