Question about ADD,PDD-NOS and meds.

iVillage Member
Registered: 06-26-2004
Question about ADD,PDD-NOS and meds.
19
Sat, 08-05-2006 - 8:19pm

Hi all.. I have posted here before but I think it was too long ago for me to even remember.. My DS is 6yrs old and has been evaluated 3 different times before getting a dx of ADD and PDD-NOS (They believe he has AS but he needs to go to a seperate place for further evaluation) And along with therapy they are recommending medication.. The psychiatrist recommends concerta or another stimulant for his ADD, while my pediatrician recommends stratera a non-stimulant.. Even though both agree that either medication can have ill affects on my son (he has anger issues and they are afraid it could become worse).. I am just wondering if anyone out there has a child with both ADD and AS (or PDD) and has any advie on medications or treatments..Thanks in Advance..

Jennifer.. mom to Patrick (6), Autumn (4), and Timmy (9 months)... (yes, I have my hands full!!)

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iVillage Member
Registered: 03-27-2003
Sun, 08-06-2006 - 4:47pm

My 6y son is bipolar, ASD, Anxiety, and language disorder.
His main issues are anxiety and aggressiveness. He really isn't ADHD. He is only hyper when going manic. Now----ADD--maybe. But he has no attention in a regular classroom with 25 kids. It's his anxiety. I just asked our psychologist last week if his inattention is due to ADD or anixety/ocd. She said it didn't matter---he was inattentive--whether the cause was actual ADD or his obssessiveness in doing something else.
He tried Adderall last year---increased his anxiety---he was already on his mood stabilizers. He had tried prozac, etc at 4yo---became manic.
We took him off meds---but had to add back his risperdal--which I will say--is the best drug that has actually WORKED for him and his raging/aggressiveness. We started Strattera this past week--because of his impulsiveness. After the first dose---I'm seeing bad results. But----also good ones. So now I'm increasing his risperdal to solve the side effects. But he's only had 3 doses so far. I will give it a chance.

To the person whose child is on depakote-------why? Depakote is a mood stabilizer for bipolar. It is not for attention.

Holly

Avatar for littleroses
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Registered: 03-28-2003
Sun, 08-06-2006 - 6:12pm

I see, this sounds similar to my youngest daughter, minus the aggressiveness. Since she is on depakene, it's quite possible it inhibits any aggressiveness she might have. I don't know, she's been on it since she was 15 months old.

The valproic acid drugs (depakene, depakote, etc) is sort of a catchall for many brain "short circuits" In addition to bipolar, it treats epilepsy (as my daughter has) as well as migraines and diabetic neuropathy. I think it's because it inhibits glutamines which are overabundant and not converted to GABA fast enough.

It could be possible his inattention is due to ocd/anxiety. My youngest daughter is OCD/anxiety type and while it seems she is being inattentive, she is really often tripped up on her OCD. I know someone who has OCD thoughts. A color will appear over and over in this persons mind. He has no control over it. It just appears until it's almost torturous. He's trying to think of something else but it pops up unwillingly. I can imagine under those circumstances, it would be very hard attend to their environment. These types may be inattentive because they are OCD. My daughter has her own triggers which compel her attention away. She is not hyperactive, but inattentive. I have two types of inattentive girls and each one seems to be a side effect of something more than a class by itself.

The person I mentioned before went on zoloft to help with the anxiety and OCD. If you decide on an anti-anxiety med. I'd highly recommend a short acting anxiety med (like clonazepam) to help through the first month while the med levels build up. Someone else on this board also did this. It really is hard the first month because while the med levels of the anti-anxiety drugs are building up, they can actually increase OCD symptoms and make them feel worse for awhile before they begin to work. So it really is just kinder to the person to give them some relief (like the clonazepam) while they go through this hellish phase.

An alternative that helped my youngest daughter was giving her TMG. Someone awhile back suggested this and I researched it for awhile before trying it. TMG is trimethylglycine you can find at a vitamin shop or online. It's an amino acid derived from sugar beets. I give her 125mg twice a day and noticed it working in a week and half. It's sweet so I crush it and put it in her juice. It increased her language by a year and best of all, it improved her anxiety. Just something to consider researching if you just get desperate. It's not for the ADHD type so my oldest doesn't get it.

I really hope you find something that works. Just remember to trust your gut in what you think it's doing (or not doing) for your child and also keep in mind that some of these meds may worsen symptoms for awhile until they get to therapeutic levels and a short acting anti-anxiety drug may not be a bad thing to discuss getting from the doc.

iVillage Member
Registered: 06-03-2006
Sun, 08-06-2006 - 8:07pm
Hi!
Son is probably bipolar as well as AS& ADHD and social anxiety. He is becoming quite impulsive and grandiose in his thoughts. It seems there are many problems. I am dealing with the AS and ADHD,I am not ready to accept the bipolar yet. I lurk at the children's bioplar/mood disorder board.
iVillage Member
Registered: 03-26-2003
Sun, 08-06-2006 - 8:19pm

LR,

Tell me more about the TMG. What does that do? I took Cait to that psychiatrist and she suggested GABA for Cait. I haven't quite started it yet. I know that GABA has some connection some how to the seizures perhaps and what you explained about the glutamines makes sense and it seems that GABA would just mask it.

What does the TMG do? Would that help convert the glutamines faster?

She recomended not doing the 5HTP which is the amino acid she recomended for Mike. Mainly because Cait is sleeping and napping too much already and 5htp would likely make that worse.

Renee

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iVillage Member
Registered: 06-25-2003
Sun, 08-06-2006 - 9:51pm

It's always a tough question, because many kids who are on the spectrum can look ADHD, but as Renee said it is not 'true"

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
Sun, 08-06-2006 - 10:47pm

oh, very good point on the seizure threshold Paula. Despite Cait having a seizure disorder it wasn't even mentioned to me when the same doc put dave on stimulants. Low and behold, Dave started having absence seizures on them.

Stimulants were wonderful for Dave for ADHD stuff but obviously I wasn't going to give him something that caused seizures. That is definitely something to watch for.

Renee

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Registered: 10-09-2003
Mon, 08-07-2006 - 11:09pm

I have two kids, both with ASDs.

~ Chelsea
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Registered: 03-27-2003
Tue, 08-08-2006 - 4:57am

My son is ad/hd, bi polar, as, border line iq, and has massive phobia's. I had him on strattera and all he wanted to do is fight and it didn't matter who anyone and everyone... He is now on ritalin and alot of other medications. But he never had an anger issue until the strattera came along.

Tina

 

Avatar for littleroses
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Registered: 03-28-2003
Tue, 08-08-2006 - 10:32am


I've been busy, sorry for the wait. I'll give the short answer, then the long answer. LOL Glutamate is converted to GABA. If you have too much glutamate(excitatory) compared to the conversion rate to GABA(inhibitory) then you have an imbalance. The problem is why so much glutamate then? (get to that later)

TMG helps to reduce homocysteine. You really should do a cursory search at what homocysteine does to the body, the vascular system. We get methionine from our foods. Methionine is turned into homocysteine. Normally a damaging substance, I think homocysteine is needed for it's sulfur, then gets recycled back to methionine. So, homocysteine has these two options. However, it's getting stuck in a lot of ASD kids so not only are they not getting the optimal benefits of methionine, they aren't getting sulfate either (a detox end product). There are a lot of B vitamins involved in this process, the most commonly mentioned star players are B12, folic acid, B6, but riboflavin and niacin are important too.

As you know, many ASD kids and many people who are not ASD are intolerant to phenols. Generally, phenols are antioxidants, so that is a good thing, however phenols can also be toxic. Unfortunately, for people who can't process the phenols, this leads to a backlog of them. Some people believe sulfur part the phenol-sulphotransferase enzyme is impaired by mercury because mercury is "attracted" to sulfur. Anyway, so the phenols don't get processed with the sulfur in the liver to become a less toxic substance like it's supposed to. This is what phase II of the liver detox system does. Phase two takes that temporarily toxic substance and makes it benign. This backlog of phenols in the body not only has the body in excess of it's toxic value, it is not getting the anti-oxidant properties it posessess either (or as efficiently).

Another part of the sulfur system is how we deal with homocysteine. In this case, many ASD kids have been showing up to have a genetic "weakness" for the MTHFR enzyme, how the body deals with homocysteine. It's not converting it back to methionine very well. The backlogged phenols create extra homocysteine in an individual who probably has a fairly low ability to deal with homocysteine anyway. I believe the excess phenols also cause collagen issues too, but I won't get into that again here.

Some therapies I've noticed seem to focus on 3 things. Reducing phenols or doing epsom salts. The other thing they focus on is supporting the methylation of methionine (to deal with homocysteine) due to the flood of unprocessed phenols. There are some key players in this process, B12, folic acid, b6 being significant. There are others tho, but that's why you see discussion of those things a lot. Or some people believe they need to remove mercury. Some do all 3 things.

To answer your question, TMG deals with the methylation part. It adds a methyl group so that homocysteine can go onto become methionine. B12 also does this, but b12 seems harder to obtain for some reason. This is why some kids do so amazingly well on the b12 shots. TMG seems to not have to have the same absorption difficulty as B12. It doesn't fix the ultimate problem, but helps reduce the amount of homocysteine. I don’t know that TMG is for everyone. I think B12 is better for someone like me than TMG, but for a slow oxidizer like my daughter it's great.

The GABA part of the post: Folate is a glutamate form of folic acid. Folate exists in foods as polyglutamate and is consider the bound form. In order for it to be used in the body, it needs to be conjugated into monoglutamate and this happens in the small intestine. Enzymes in the intestine digest the polyglutamate (the folate form found in food) to the monoglutamate form(the body uses in plasma). The body then adds a methyl group to it and sends it on to the liver and the cells. (there’s more after that, but you get the idea) I think what happens in my daughter is that folate is building up because it can’t go on to be a useable form of folic acid (needs B12). We can see how then possibly glutamate is built up to become excitatory due to the folate trap. The glutamate simply can’t be coverted to GABA fast enough.

I think the gist is this: something messed up the PST enzyme which backlogs phenols and messes up sulfur which trips up the homocysteine cycle which causes oxidative stress and poor blood flow due to stressed arteries. Phenols also affect blood coagulation. Cysteine, methionine and taurine are the only sulfur containing amino acids. Methionine goes onto become homoCYSTEINE (and in an ideal condition gets to be recycled to methionine) and taurine can be made from cysteine. Cysteine is a very important sulfur donor in the human body. (Though I wouldn’t recommend buying “cysteine pills” or anything). So homocysteine is messed up which messes up folate and glutamate. In addition to having lots of excess folate floating around, there’s either not enough b12 to keep up with it or simply poor absorption of it in the small intestine to help it go on to the usable form. That means the glutamate is messed up too (I believe).

In my daughter’s case, that means seizures. In other kids, it mind mean spaciness or need for deep pressure, etc. because glutamines (which get converted to glutamate) are ubiquitous in our diet and are needed to help us relate to our body, our body knowledge, where our limbs are at in space and time, etc. Glutamate also is involved in helping regulate calcium flow. And calcium is excitatory and turns switches “on” at the cellular level. High homocysteine is suspected in osteoporosis as opposed to intake of calcium.

What I’ve been trying to understand is how sulfur (eggs, cabbage, high quality whey, etc) makes my youngest daughter better and only makes my youngest daughter and I worse. Either way, both the sulfur intolerant and the sulfur “loving” types in our family are making too much homocysteine. I think my youngest dd is stuck in the phase where it just is homocysteine and doesn't get broken up for it sulfate nor does it get to go back to methionine as well (to be used for sulfur and other properties). I think I'm stuck at the point where it goes on to become cysteine, but doesn't turn back into methionine efficiently.

Phenols are good, yet bad if you can't keep up with processing them. Phenols can affect your hormones because they can be estrogenic...the "bad" plastic that was found to be an estrogen mimic is bisPHENOL-A, for example. Girls have more protection generally than boys because they have more progesterone to protect against the extra estrogen. Phenols affect blood coagulation. Phenols need to be processed with sulfur in the body. Phenols can cause more homocysteine.

There is probably the cultural aspect. The US allows a lot of phenol preservatives in food. I think red dye #40 is a phenol compound they derive from coal tar products. (Interestingly, my oldest daughter will get eczema from dryer sheets, which are covered in petroleum products). Also, a common phenol preservative is BH4. I saw that preservative in the new fruity cheerios. There's more preservatives, but you get the idea. Many of these preservatives are banned in other countries. Also, the Americans have a diet probably already favorable to a higher homocysteine production.

Not that this is all set in stone or even accurate, but what I understand and how I translated it and maybe helps others look in their own direction. You get bits and pieces here and there from various place, but there's never a big picture. I would ideally like to someday draw up a chart, put it on a webpage and draw all the dot to dots. I also have my own personal observations from my family and self which relates to much of the above information but would be another few pages long.

Anyway, TMG may not work for everyone because of the step it supports. TMG is not generally recommended for overmethylators. Too much can even make my low energy daughter hyper. Just the right amount is a world of difference for her tho. I notice it takes about a week and half for any oral methylation support to kick in for my daughter.

I try not to get too sold on one belief tho. Even something I think is fantastic, I will try for awhile and back off it. After some months, I'm taking a break from the TMG. I've noticed she hasn't regressed, which is great. I will start her up again on it to see if she moves forward on it again or if it seems to have maxed out it's use.

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