Hammesfahr Neurological Institute

[Beata J]

Hello Everyone,

My son is 12 and right now on a 5mg dose of Tenex for his ticks and in desperation, we had to put him on this new medication Abilify, only 2.5. He was so bad, that attending school was very hard. We didn’t know what to do and it was the best way to help him, for now. I do not want him on this medication for a long time, since like any other anti-psychotic medications, there are some serious risk. I am sure most of you know what it is. Well, I found this new institute that claims that by restoring blood flow to the brain, it can help people with TS, CP, autism, learning disabilities, etc. www HNI.online.com. Has anyone tired this program. It is costly. Beata J

[Chemar]

Hi Beata J and welcome

 

This is the first I have ever heard of this treatment, or of the suggestion that Tourette Syndrome has anything to do with "blood flow to the brain" needing to be restored.

 

I thought I had explored just about every corner of the current research on TS, even some of the slightly bizarre ones ...but i have NEVER come accross this before.

 

That is not to say that there isnt something relevant in it....I truly am totally ignorant as to what the theory would be behind this treatment.

 

Anyway, just to give you a less costly option to think about....my son has gone from extremely severe TS/OCD/ADD to just mild tics and negligible OCD and A's and B's at school (he is in 7th grade now).....

 

we had him on an assortment of meds for a year, but truly found the side effects MUCH worse than his TS etc and so switched to alternative treatments primarily involving supplements based on the research by Bonnie ( http://www.bonniegr.com ) but designed to suit my son's specific needs.

We have also found accupuncture and biofeedback(not neurofeedback) very beneficial...and, like most others here, saw a tremendous improvement by eliminating artificial food from his diet .

 

A major breakthru also came in identifying and detoxing his system from yeast(Candida) overgrowth, and heavy metal accumulation (primarily mercury)

 

 

I guess the concept that you posted about has merit in that usually increasing bloodflow to an organ results in increasing nutrients to it and removing toxins from it........Please do keep us posted as yopu learn more about this technique...and also stay in touch here to get great support and maybe learn more about the ways we are all helping our children.

 

You may also want to ask on the BrainTalk Forum to see if anyone has heard of this treatment...there are some very knowledgable people and professionals who post there too

 

http://brain.hastypastry.net/forums/forumd...aysprune=&f=253

[Beata J]

Thank you for the information. I will check out the forum. I’ve heard about Bonnie Grimaldi’s treatment. Is it safe to take so many supplements? Did you consult with anyone before you begun? Of course, my son’s doctor didn’t recommend it when I mentioned this treatment, just flaxseed. His regular allergy tests came out negative. My son, also in 7th grade, has no side effects to his medication yet, and it works for now...

 

What is very intriguing about the HNI treatment is the fact that using FDA approved medication in very small doses, this treatment is supposed to restore the blood flow to the brain and improvement is supposed to be PERMANENT. There are also no side effects and nobody was ever hurt by his treatment or gotten worse. I think it is mainly used on stroke patients. What I feel uncomfortable about is that it is 5K (2 weeks + additional 2 later on) and they are located in Florida, and we live in NY. I think patient should be closely supervised while on any kind of medication. I didn’t feel this treatment was right for my other child who has CP. I don’t think I can deal with more medication for very little progress. But in case of TS, it might be a different story. On the other hand, there are plenty of crooks, even doctors, who just look for an opportunity to abuse our need for help and our desperation.

[Claire]

Beata,

 

This sounds like a very invasive treatment, still in the experimental stages. That doesn't mean it doesn't have merit.

 

I can't encourage you enough to read the threads here and under the right practictioners supervision, see whether some of these other methods/tests might help. Many of us have found the same thing as Chemar--heavy metals, yeast and food or environmental sensitivities.

 

Normal food allergy tests only cover instand reactions, there is a more detailed test for delayed sensitivities. My son had several and they do affect him.

 

Claire

[Guest Guest_efgh]

Beata

 

goodluck to you and your son. For how long has your son been on tenex and abilify? when did his tics start? does he have ocd/adhd too? what are his tics and are tenex and abilify helping his tics?

Did your doctor recommend flax seed oil? is he a normal allopath doctor or a natural doctor? suprising that an allopath recommends flaxseed and hence my question to you.

you have come to a right place and you can be sure to get a lot of help from experienced people here.

 

goodluck and keep in touch.

[Guest Guest_efgh]

Beata

 

Wanted to just find out if TS is there in your family? Generally they say its hereditary. What is CP?

 

goodluck to you and your son. For how long has your son been on tenex and abilify? when did his tics start? does he have ocd/adhd too? what are his tics and are tenex and abilify helping his tics?

Did your doctor recommend flax seed oil? is he a normal allopath doctor or a natural doctor? suprising that an allopath recommends flaxseed and hence my question to you.

you have come to a right place and you can be sure to get a lot of help from experienced people here.

 

goodluck and keep in touch.

[Beata J]

Unfortunately, it is hereditary. My husband (not diagnosed) is suffering from variety of tics.

CP stands for Cerebral Palsy. My son is on Tenex for about 2 years. It helped for a while, and helped his mild ADD a lot. No OCD. He is taking Abilify for about 2 months now. The dosage is very low, but the positive reaction to this med. was almost instant. I refuse to give him more. It is a temporary fix as far as I am concerned. His tics are extreme blinking and jaw opening (at the same time) body movements and vocal sounds (although not much recently). Actually his psychiatrist recommended flax seed/fish oil, or rather said it is OK to take it, considering there were some rumors about its benefits. Can’t say if it is true, my son forgets to take it. I need to find natural or environmental doctor. Any ideas? NY area. By the way, what kind of doctor is allopath? Never heard of it.

[Claire]

Beata,

 

I posted this on another link title alt. doctors in NYC or something...

 

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... here is the DAN list, with MDs and naturopaths who follow a diagnostic protocol for underlying health issues aggravating neurological issues (beyond autism) then alt. paths for treatment.

 

DAN list on www.autism.com/ari. Click on DAN on the left, then finding doctors.

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Beata, please keep in mind that their are MD's on the list if that is what you are comfortable with, and insurance covers much of the testing. I felt very nervous about supplementing blindly and Chemar always cautions on this also.

 

My son's doctor tested for vitamin deficiencies, heavy metal toxicity and yeast before suggesting any supplements. You can look at my maybe too detailed thread on this to see step by step what we went through. Low and behold, the doctor uncovered similar problems in my son that others here have also found in their children--we compare notes alot and others post their results too. We all learn not only from eachother and our research, but from eachother's doctors too.

 

http://www.latitudes.org/forums/index.php?...t=60entry3053

 

Claire