2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I know I promised myself and a few others on this board that I would look into other things before ADHD prescription drugs for my almost 10 year old.
Most of you know that my problems seemed to surface after a two week therapy of Agrisept-L. I stopped it, but the issues are still there.
I cannot go back and change whatever occurred. So, I am trying to gather whatever I can for a rainy day.
He sees the great Doc J this summer, and I wouldn't dream of anything like this until after that. I also need to go back out west after a few other things are tried.
One thing that will be done is tonsil removal. He is not draining, so I am told, but he also has trouble breathing when he laughs and sleeps. He seems to gasp for air and he turns red and his eyes roll back into his head as he's laughing uncontrolably.
He has one humongous tonsil. Some feel O2 deprivation can lead to ADHD.
So, he's not the unresponsive type. He's also not compulsive.
He has the inability to stop fidgeting, and he has some newly acquired tics.
I accredit the tics to his hyperness.
We are eating healthy, cutting back on sugar, getting excersice, taking detox baths, trying to add in the fish oil, but for now are supplementing with flax seed oil.
But, I have been trying to research Epinephrine/Norepinephrine and how to reduce it in kiddos.
It seems the hormone levels can be high, the pathways damaged, or the brain inflamed leading to more damage. The fish oil is for inflamation. Incidentally, one of the things they suggest on this site was lithium, which somehow creates an increase in Omega 3 in the brain. They realise that now, and feel that's how it works for bipolar etc.
But, other then dopamine drugs, and stimulants, Intuniv came up for blood pressure.
It's used for ADHD alone or in combo. It seems real effective on the responsive, non-compulsive fidgeting HD of ADHD.
Does anyone know about this topic or about this drug?
Just though I'd have it as a background arsenal of info-
Maybe someone has experienece with it in kids......
Anything helps. Epinephrine info.....
Thanks, as walways
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I just read the list of side-effects and I know I would never want to take this drug.
As he has to wait to see Dr. J - can you connect with a doctor through the LYME INDUCED AUTISM community?
I think it's important that any doctor who might prescribe this (or any other) medicine to modulate his behavior is thoroughly lyme literate. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hey there, roads!!! Hope you are feeling better now!!
Do you want me to move this to Medical for you??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Me either Keebler, but he looks so uncomfortable.
Some people say it's for the parents. I guess my guilt is partially to blame, but it's mostly trying to make him less uncomfortable.
I imagine it's like being on way tooooo much java. How can one live like that?
I agree about the doctor being knowledgeable, it's just that out west here I cannot even find a doctor that delves in behavioral therapy as an alternative, let alone the concept of lyme. But I know we gotta start somewhere....and thanks to Dr. Phil.....
Okay Tutu, sure...if it can belong there I'd prefer. I know I may get more hits there. Thanks sooo much for the warm welcome back! I am doing the best that I can, and one day at a time...I try. Add lots of prayer, and here I am.
Big Hugs-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
I'm new here, but it seems to be a medical question to me.
Hope you get the help you need!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Didn't you take him to see Dr. K.? Or do I have you mixed up with someone else?
If I am not mistaken, Dr. K. said he needs antiparasitics, but understandably you were afraid of the strong pharma drugs. How about antiparasitic herbs?
Parasites can be a serious and HUGE part of this disease, as I and others have posted many times. Sorry for nudging you again about this, but REALLY concerned.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I did Gael, you don't have me mixed up.
Thanks also for all your feedback. You have been another person that has given so much to me, despite myself.
I have not treated that yet. First off, my husband is barely hanging in there with me giving flax seed oil. He hands me the bottle so the blood is not on his hands. It's like Caeaser and Pilate.
He screams I did nothing and he wants me to do nothing. Yet he lacks explanation. So, I have a bunch of blood work that has to get done still. Some from the Neurologist, some from someone who worked under Dr. K that sent me the kits. I was hoping it could be drawn at Doc J's office in a couple of weeks.
The test will also look (fairly well I'm told) at a slew of different parasites.
So, there is investigative work that can be lined up without a frown....hopefully, and great if it lines up with the other blood work.
There's so much to do and consider. Do you have any thoughts on the neurotransmiter theory and situation?
I'm so glad your nre here Tutu, your arrival is well-awaited on Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Google Neurotransmitters + brain gut connection.
Amazing info on the symbiosis of the two. I am a big believer that when you heal the gut, you heal the brain
Also wondering if coconut oil would help calm down the ADHD? New info on it or lauric acid being used for alzheimers.
I totally agree with Keebler about the side effects of the drug...way too dangerous.
Feel so bad for you that your son is so sick. Hugs and prayers.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
My son is on Intuniv for what they won't diagnose yet as bipolar disorder (runs in the family) because he's too young (just turned 9). So he's currently 'labeled' with ADHD, PDD-NOS and behavioral disorder-NOS.
I have to say that the combination of risperdone and intuniv has finally got him to a much better place. I don't like having to give him this stuff, but he's in such a better place mentally now. He gets regular bloodwork and checkups, and seems to be doing just fine on it. He hasn't even gained too much weight on this combo.
It took a while to figure out the right dose, but he's much calmer now, without being tired, and we haven't had any trouble with side effects.
So there's our experience with it. I don't know if its helpful information, but it has been working well for my son.
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Gael, I have read about that. I had him on probiotics which seemed to be helping, but took him off because I did not know how much of this was psychological and stress related, and he was so done with pills.
So, I try to put some probiotic yogurt in, or something else, but it's not enough.
Plus, I have no spousal support to do much of anything.
The only thing he is taking is a Centrum vitamin.
Thanks too Wendy. I am sorry about your plight. It seems some kids do well on it, others do not, depending on the cause of the deficiency. I do worry about side-effects.
I guess time will tell what is happening to my son.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
My grandson was started on this drug last October. I was ADHD and was later to be diagnosed with Tourette Syndrome.
It was meant to take in combination with another drug. My grandson is 6.....he takes this with Risperdone. He is very much improved in his behavior at school, but he has had a big weight gain. He weighs 72 lbs. It does cause weight gain.
It is not a stimulant type drug, but more something that may make your child sleepy.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
The owner of Custom Probiotics said probiotics are very calming. Take them at night if you or your son have trouble sleeping.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Trickey Tickey. Sent you a pm.
Thanks Tutu. I think he is sleeping okay for now. It does take him a little while to get to bed. Anywhere from 15 minutes to a half hour. He probably has become more of a light sleeper though.
But, he stays in his bed for 9.5-10 hrs. I assume he is sleeping.
I do think we need to drink the Kefir. Dr. B said 2-4 ounces for an adult.
It's a good probiotic-like drink.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Just get the kind with the LEAST amount of sugar.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Yea, that's my problem Tutu.
We're trying to cut back on sugar too.
My husband will not let me give a probiotic pill, so I don't think I have much choice.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I just wanted to share- it is personal, I have my own guilt, but I hear you reaching out to those with Lyme and co. children.
I have done bio-med with my daughter, 7, for 3 solid years, with some incredible Dr.'s in the field, helping us, on 2nd LLMD.
She became violent and abusive- at home- it escalated and had grave affects on my family (2 other neuro typical, healthy children.)
It finally broke my husband and I - not apart, we have a good marriage, but we all broke.
Long story short, she got dx'd with ODD - we went very low dose Risperadol - it is helping. She will also be going to therapy -
We had tried tenex (did NOT work) and also low dose clonidine - did nothing- Neurotransmitter testing showed very high dopamine and seratonin -
Believe me when I tell you I tried every natural supplement known to man- didn't work, or adverse affects.
We are currently treating her Lyme slow and low with herbs as we get her stabilized.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks for sharing Surprise. It feels like you are in the forward direction to healing.
What is bio-med and ODD?
Where did you get your neurotransmitter testing? Other people have made suggestions, I just forget where the info is. Possibly, inadvertently deleted.
Did you say there were no adverse effects or there were?
Risperadol seems to be what everyone has mentioned. I looked it up and was concerned about a lawsuit regarding breast growth in boys. Don't know what to make of that.
So much....
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Bio-med refers to trying to heal the ' problems' in the body that are producing negative neuro effects in the children- The movement in the autism world toward recovery- Healing the gut, viruses, infections, special diets, etc.
My daughter is not autistic, and does not have development delays, but OMG I have worked hard with her.
My 'surprise' was finding Lyme and co. in both of us last year.
Our last LLMD ran a urine neurotransmitter test on her, could not believe the high levels of dopamine AND seratonin, I tried the natural supps for these recommended and made by neuroscience, to no avail.
Again, we were at rock bottom. The LLMD actually said: The only other thing that might help her is Risperadone (we did not start it with him.)
This is only our experience.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
By the way, I am in no way endorsing or encouraging the use of these types of drugs- I was just sharing my recent journey about this issue.
I had her professionally evaluated for this disorder- and by God, she fit it.
Also, and I am sure you know, overgrowth of yeast in children (my kid!) can cause deplorable behaviors. As can Lyme, Bartonella, you get my drift.
You have to do what is right for your child, your family.
And I think that is the very hardest part of having a child with these types of infections and disorders. Trying to figure out what is 'best' at any given time.
I also recently did a urine OAT test to rule out clostrida (c. diff.) just in case- Blessings, sending you PV'S ---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Surprise for your info.
I have been trying to study neurotransmitters, and to learn which ones trigger what behavior.
It seems my son may have a few that are off. I worry about the epinehrine being too high, but also the dopamine being too low.
It's interesting that yours would be too high.
I have also looked into these Neurotransmitter urine teats, and there is big controversy over the accuracy of them. What say you?
So, I am trying to place symptoms with transmitters. Likely not accurate as well, but not far from what the duck do.
In my son, he seems to have a twitch/restless leg thing which could be iron and his ferritin has always been low, so I put him on a vitamin a couple weeks ago. But, dopamine is fitting into the picture as well, similiar to Parkinsons, as a potential cause for restless leg.
Also, Tourette's brings up low dopamine. He has this too.
I don't think it can explain the nervousness and need for stimulation, but maybe it can. It's more like a "restless body".
Trickey, did your grandson try and dopamine type drug?
I have read that Tourette's can self-correct, and trying to take warm baths (increase dopamine) can help with restless leg.
Toureete's also peaks between the ages of 9-12. My son is almost 10. So, it would seem that a young mind can somewhat restore dopamine levels if the condition improves. It has to do with the frontal cortex as well.
So, if I can wait regarding the rapid onset of these issues, and it doesn't get any worse......I will try.
But, I still wonder where the fidgety, nervousness comes in. Some kids have ADHD with the Toureet's. If having Tourett's and these kids don't respond to main stream meds, that makes sense because it's not epinephrin, but dopamine, and it is lacking. An increase in epinephrin manipulating drugs would make it worse, I would think.
I don't know. Just talkin' aloud.
But, the Intuniv might be a good drug to couple with a Parkinsons' type drug because it slows you down w/r/to BP. It wasn't approved to be used for longer periods of time though-I don't think. Trials for the drug are cited for 9 weeks.
Not sure if a false sense of hope would really help.
But, at least it doesn't add neurotransmitters, just works with the channels. Then again, fish oil might just be best for that.
Also, read that Co-Q10 seems to play a role in helping dopamine issues, as well as St. John't Wart is used a lot in Europe.
Any thoughts on any of this anyone.
Thanks,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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