FiFTEEN MONTHS OF PALLIATIVE DRUG THERAPY WITH EVEN MANGANESE SULPHATE IN TWO SIBLING WITH NEURAL-AXONAL DYSTROPHY OF HALLERVORDEN-SPATZ.

(Updating, July 2003).

  Renato COCCHI, neurologist and medical psychologist  

(Traduzione italiana)

Summary
 Two siblings, M and F, of 21 and 15 years, both affected by neural-axonal dystrophy of Hallervorden-Spatz were given a trial of palliative therapy acting on the stress responses, symptoms of which  were present. The up-to-now results, after seven months, greatly differ, being enough good in the sister, very modest in her brother. The result here reached, after fifteen months of drug therapy with manganese sulphate addition, appears much different. The girl, that abandoned at once the manganese, has increased dystonic aspects and lost her language. The brother did get sensible improvements.

 

  Key words: Neural-axonal dystrophy, Hallerworden-Spatz disease, stress, palliative drug therapy. 

Genetic and cromosomal anomalies


Drug modulation of stress reactions

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  A mother asked me if an antistress therapy as habitually I am prescribing could give  some relief to two siblings respectively of 21 and of 15 years, at first consultation, both suffering from neural-axonal dystrophy in the Hallervorden-Spatz variant.

 First I specified at once that I could not act on the fates of these two young persons. Then I asked the mother, treated with success for a severe depression, if they were present some symptoms that thought and I think stress symptoms.  

According to the criteria I previously described (index-it):

1. Any internal biological-metabolic modification capable to disrupting homeostasis can cause stress reactions.

2. Every illness can have symptoms of stress as accompanying symptoms besides its direct symptoms.

3. The modulation of stress responses can give some relief to every illness, even to genetic-chromosomal diseases. (Down' s syndrome; Other genetic or chromosomal anomalies),

if I might find stress symptoms I could try a modulation of stress responses.    

After confirming the presence of several symptoms of stress in both siblings, I decided to accept them to the consultation, to set up an antistress therapy.  Seven months later, with a problematic drug therapy set up by following approximations, I decided to give a first report.  

 

A short neuropathological and clinical recall.

The neural-axonal dystrophy or the Hallervorden-Spatz disease is a disorder of the movement from brain degeneration on genetic base, autosomal-recessive type.  

The causing gene has recently been said as PANK2, which is allocated on the chromosome 20. This corresponds to the pontothenic acid kinase that is essential for the synthesis of the coenzyme A, by starting from the pantothenic acid or Vit. B5 (Zhou and coll., 2001). 

 In its turn the coenzyme A is essential for the synthesis of fatty acids and for the energetic metabolism. The deficit of the pantothenic acid kinase drives to an accumulation of cysteine in the ganglions of the brain base, and therefore to an accumulation of iron in this brain areas ( Gordon, 2002).

The illness presents extra-pyramidal dysfunction signs, which come out iron accumulation in the globus pallidus and in the pars reticulata of the substantia nigra, and mental deterioration.  The redox cyclization of the containing iron compounds, ferrous citrate and haemoglobin, increases the hydroxy free radicals, the lipidic peroxidation, the axonal dystrophy, and by oxidative stress, the necrosis or the apoptotic death of the nervous cells.

An overflow of dopaminergic activation seems even present, as the cause of  the psychomotor dysfunction (Chiueh, 2001).  The axonal dystrophy can be  observed following the biopsy of the sural nerve, while the NMR shows both sides pallidal hypodensity, the same already found in the children's form (Simonati and coll., 1999).  

From the clinical point of view had noticed, besides the progressive dementia, dystonia, choreoathetosis, muscles' stiffness. In 33% of the cases,  spasticity appears, from paraparesis to spastic tetraparesis with myoclonic movements, and akinesic mutismus (Wakabayashi and coll., 2000).

 Dysarthria, mental retardation, facial grimaces, dysphasia and visual deficit following optic atrophy are all less frequent (Physician's Guide to Rare Diseases, 2nd edition).  The damage of the second motor-neuron may be a symptom of a precocious onset (Vaher et al., 2001).

Sheeny et al, 1999, reported self-aggression with ulcerations of the labium and of the tongue have been reported, beginning during periods of intense ore-facial spasms.  

The illness onset can mimic a psychiatric form of schizophrenic type (Gouider-Khouja and coll., 2000).  In the EEG we can found, in the children's form, high frequency and high voltage rhythms (Nardocci and coll., 1999; Rodriguez Costa, 2001).

I did not find its correspondent in adult age, even if  I am right to believe that they do not change much.  Males and females are affected in same number. The duration of the illness can vary from 15 to 20 years, with inexorable progression and fatal destiny (Hickman and coll., 2001).  

Now only palliative medical and surgical therapies exist, with their main aim is the dystonia (Bruscoli et al., 1998; Sheehy and coll., 1999).  I did not find therapeutic indications for reducing the symptoms of the endogenous stress.  

 

Case histories.

 F, nearly 16 years old, suffering from neural-axonal dystrophy (NAD) of Hallervorden-Spatz, according to diagnosis made a Lombard neurologic institute. Currently she is in the wheelchair.  

 

06.04.2002:  She has nighttime cramps, for which she is awake 5-10 times every night, and so she wakes her mother who has to succour her. Other symptoms are atonic constipation, cool hands and feet, high greediness for sweet things, in particular for chocolate. She bears badly the confusion, and is worse in the afternoon, so she gets tired. In the mornings she has hunger at once.

She likes Italian pasta, but doesn't know if she likes the meat broth. She doesn't have any sore from decubitus,  has fat hair. She needs more sleep than her brother. The mother does not report any bruxism. She needs to urinate  more often than the brother. Hairy in face. She drinks if she is thirsty and asks it. First therapy trial(daily doses): S-adenosil-l-methionine SAMe) 200mg; pyridoxine 75mg; baclofen 15mg; carbamazepine 200mg; bromazepam + propanteline bromide 1.5mg + 15mg.  

 

01.06.2002: At night she sleeps and so permits her mother sleeping. She had cramps 3-4 nights for week. Now she is less constipated. The temperature of the hands and the feet is more regulated. Greedy as previously. As for school, according to her assistant she is going a little better, while the support teacher doesn't see any improvement. With the new assistant she is doing well. She doesn't longer need sleeping in the afternoon. Now she chews more easily, has more appetite, and eats more quickly.

Her hairs are less fat. She urinates always much. Differences on the menstrual cycle were not noted. She speaks as first (with difficulty). After a little time of speaking, she makes herself better understood. She assumed only 100mg carbamazepine, because with the double dose her labium trembled.  Drugs variation (daily doses ): glutamine 125mg; SAMe 100mg; carbamazepine 15mg; nimodipine 30mg.  

 

09.11.2002: Fewer nighttime cramps, usually between midnight and 2.00 AM, one night every week. The carbamazepine was stopped because it gave her some trembling (myoclonies?) to the mouth. The same did the nimodipine, even if after a longer times. There is a worsening of the speech articulation: She inclines to maintain the mouth shut. The trunk inclines to fold up towards the left side. She did not change the other acquisitions. Current therapy (daily doses): oxcarbamazepine 150mg; glutamine 180mg; SAMe 200 mg; baclofen 15mg; bromazepam + propanteline bromide 1.5mg + 15mg.   

 

05.07.2003. The manganese sulphate stopped at once, because the mother attributed it an increase of the dystonic symptoms. Even the oxcarbamazepine hung, because it increased the myoclonies, and so it was substituted with 300mg valproate daily. Dystonias have at once acceleration, for which mow is more rigid, mainly to the face and to the mouth, for which to eat became difficult, as to swallow. Her weight did get down: She lost her language. Now she does a vowel complaint nearly continue, that first she doesn't do. If the weather is changing, she wakes at night. She doesn't sleep in the afternoon. Currently she is on the wheelchair./span>

Therapeutic variation ( daily doses ).: Glutamine 250mg, baclofen 20 mg; manganese sulphate 25mg.

 

 M, nearly 21 years old, with neural-axonal dystrophy of Hallervorden-Spatz (supposed diagnosis in Pavia when he was about five years and confirmed at 11 years by a Lombard neurologic institute). First dystonic symptoms appeared when he was 15 months old, after a bronchopulmonary affection and related antibiotic therapy. Currently in a wheelchair.  

 

06.04.02: If not he does not have any interest about what one wants to him doing, he inclined to fold up on himself forward. Hypertonic in flexing, with a carinate thorax. He has always the rigid hands, and cramps (??) to the left foot. He suffers from the cold (cool hands and feet ), but with sudden hot flashes. He is oversweating. Often he has sores from decubitus because of orthopaedic devices. He has fat hairs, with dandruff. Since some months he regurgitates. He drinks much, has spastic constipation, and  bears badly noise and confusion. He reacts badly to flu vaccinations and to antibiotic treatments.

In past he had epileptic fits, for which assumes valproate 250mg daily. Greedy of sweet things, hr doesn't intakes meat broth. At night he usually sleeps. Prescribed therapy (daily doses): Valproate 250mg; glutamine 125mg; pyridoxine 150mg; carbamazepine 200 --> 100mg ; baclofen 15 mg; diazepam 2mg.  

 

01.06.2002: The carbamazepine stopped him to urinate even at 100mg dosing, and the same when replaced by oxcarbamazepine 150mg. Even to low dosing  unexpectedly myoclonies to the labium and to the chin arrived, so the  oxcarbamazepine too went out of the regimen. He has always rigid hands, and cramps to the left foot. Now, he has swollen feet, and certain days he is unable to extend the back. His chewing became slow. He drinks always much. Fewer hot flashes, less oversweating. The limbs' hypertonus in flexing unchanged. The regurgitation increased, but the bowel is less spastic.

He stands badly noise and confusion. Greedy as first for sweets. His sleeping runs well as first. Perhaps improved his character, being less impatient. Therapeutic variation: valproate 300mg.   09.11.2002: He has myoclonies to the left inferior limb. He moved with his wheelchair.  He tries to do something. The hands show phalanges overextension. No new acquisitions in comparison with the preceding checkup were reported. He badly feels weather changes. Therapeutic variations ( daily doses): glutamine 180mg; pyridoxine 75mg; valproate 300mg; baclofen 15mg; diazepam 2mg; bromazepam + propanteline bromide 1.5mg  + 15mg.  

 

05.07.2003: Since over four months he assumes even manganese sulphate in water solution, about 100mg, daily. He is reacting better, eats better, swallows better, with his bowel function more regulated, but he has always atonic constipation. No more grimaces. In the Day Centre that he attends, people say that he is more active, and it is seen in the drawing. He is much less complaining. He has to feet and legs spasms ( a little increased ) but he reduced the hyperextension of the hands' phalanxes. Now he sleeps better and he does an hour and a half sleep in the afternoon. Some times he wakes at night. More serene, his mood improved, Now he inclined to the varus position of the legs and feet. Cutaneous eruptions increased.

Therapeutic variation (as a daily dose): Baclofen 20mg.

 

Discussion.  

The discussion on this trial of  palliative therapy in two subjects, suffering from neural-axonal dystrophy, Hallervorden-Spatz type, requires recalling what they have in common and what different.  Being a brother and a sister, we must suppose that the rest of the genetic patrimony, excluding obviously the Y chromosome, is much more similar than that of two extraneous.

The duration of the evident illness, and then its more severe gravity, are decidedly divergent, at least 19 years for the young man, and not more than 14 years for the girl.  The stress symptom presence (Cocchi 1988, 1989, 1990 ) is again much different.

These are stress symptoms of the girl: Nighttime cramps, atonic constipation, cool hands and feet, greediness for sweet things, mainly chocolate, reduced threshold  for confusion, to be worse in the afternoon, asthenia, immediate hunger in the mornings, fat hairs, need for sleeping.   

In her brother I found these not specific symptoms of stress: Greediness for sweet things, cool hands and  feet, but with sudden  hot flashes, ovesweating,  spastic constipation, reduced threshold for noise and confusion, abnormal reactions to flu vaccinations and to antibiotic treatments.  No one of these symptoms, of course, is specific of the neural-axonal dystrophy of Hallervorden-Spatz, and they all can be detected again even in other illnesses,  particularly in depression forms.  

Both siblings had the bases for an antistress therapy, but  the results obtained till now are different, first enough good in the sister, quite modest in the brother. The carbamazepine and the oxcarbamazepine in the brother, only the carbamazepine in his sister, used as antidystonic drugs, were not stood. So it did not happen  either at very low dosing, with the result of myoclonic jerks to the labium and  to the chin in both.  

Oddly, in the sister this collateral effect came out even with  the nimodipine, even if with a longer time. Surely, if the EEG  features were the same already found in  infancy (Nardocci and coll., 1999; Rodriguez Costa, 2001 ), a slowing  drug as  valproate should be better, a drug that the boy kept prescribed and  maintained in therapy.  As an antispasmodic drug, in both I used the baclofen for the muscular hypertonus, still in low dosing, and the propanteline bromide for the parasympathetic hypertonus.

As antistress drugs acting on glutamate and GABA I prescribed, pyridoxine, bromazepam and diazepam.  To explain the results' difference is not easy. As for now, I prefer to believe that the therapy of the brother have not been still enough targeted.  

The introduction of the manganese sulphate as a iron chelating agent (Chiueh, 2001, Direttiva CEE 2001; Recepimento Direttiva 2001/15/CE, 2003 ), which only the young maintained, seems to have permitted in this last a switching that has brought relief of many symptoms, probably allowing the other prescribed drugs to work better. This fact is doubly interesting, because he was the most severely affected out of both, even in relationship to his age. In the sister there was an increasing of the dystonic aspects, as the expected course of the illness, and no improvement during last eight months. To e</span>Explain this result's difference is not easy. The brother improvement after manganese introduction, if consequent, would make a small opening of notable interest.

 

References.

Bruscoli F., Corsi A., Cavicchi C., Carloni R., Ferioli I., Gemmani A., Crociati M., Pompili A.:  Obiettivi terapeutici raggiungibili e strategie terapeutiche utilizzabili, nella NBIA 1 (s. di Hallervorden-Spatz).  Minerva Anestesiol 1998, 64: 529-534.                   

Chiueh CC. Iron overload, oxidative stress, and axonal dystrophy in brain disorders. Pediatr Neurol 2001, 25: 138-147.      

Cocchi R.: Hypo-A-Gaba-erge Depression bei Kindern. Klinisches Bild und mit neurochemis-ches Mechanismen Verbundene Symptome. In: Friese H.-J., Trott G.-E. (hrsg): Depression in Kindheit und in Jugend. Huber, Bern 1988: 126-133.    

Cocchi R.: Sensibilita` alla temperatura ambientale nei soggetti Down: una indagine su 432 casi. Riv. It. Disturbo Intellet. 1989, 2: 195-199.  

 Cocchi R. Precursori diretti del glutammato e del GABA e abitudini alimentari nei Down: Indagine epidemiologica su 460 soggetti. Riv. It. Disturbo Intellet. 1990, 3: 307-312. (English translation on this site)    

DIRETTIVA 2001/15/CE DELLA COMMISSIONE, del 15 febbraio 2001 sulle sostanze che possono essere aggiunte a scopi nutrizionali specifici ai prodotti alimentari destinati ad un'alimentazione particolare. Gazzetta ufficiale delle Comunità europee 22.2.2001, L 52/19

Gordon N. Pantothenate kinase-associated neurodegeneration (Hallervorden-Spatz syndrome) Eur J Paediatr Neurol 2002, 6: 243-247.        

Hickman SJ; Ward NS; Surtees RA; Stevens JM; Farmer SF. How broad is the phenotype of Hallervorden-Spatz disease?  Acta Neurol Scand 2001, 103: 201-203.  

Nardocci N; Zorzi G; Farina L; Binelli S; Scaioli W; Ciano C; Verga L; Angelini L; Savoiardo M; Bugiani O.  Infantile neuroaxonal dystrophy: clinical spectrum and diagnostic criteria. Neurology 1999, 52:1472-478.                

Recepimento direttiva 2001/15/CE sulle sostanze che possono essere aggiunte a scopi nutrizionali specifici ai prodotti destinati ad una alimentazione particolare. DL 14 febbraio 2003 n.31, pubblicato sulla G.U. n. 47 del 26 febbraio 2003.

 Rodriguez Costa T. Distrofia neuroaxonal infantil. Presentacion de dos nuevos casos y revision de los ultimos diez anos de la literatura.  Rev Neurol 2001, 33: 443-448                  

Scarano V; Pellecchia MT; Filla A; Barone P. Hallervorden-Spatz syndrome resembling a typical Tourette syndrome. Mov Disord 2002, 17: 618-620.                

Sheehy EC; Longhurst P; Pool D; Dandekar M. Self-inflicted injury in a case of Hallervorden-Spatz disease. Int J Paediatr Dent 1999, 9: 299-302.             

Simonati A; Trevisan C; Salviati A; Rizzuto N. Neuroaxonal dystrophy with dystonia and pallidal involvement. Neuropediatrics 1999, 30: 151-154.   

Swaiman KF. Hallervorden-Spatz syndrome. Pediatr Neurol 2001, 25: 102-108     

Vaher U; Napa A; Nurmiste A; Piirsoo A; Sibul H; Talvik T. Four siblings with Hallervorden-Spatz disease. Brain Dev 2001, 23: 236-239.

Wakabayashi K; Fukushima T; Koide R; Horikawa Y; Hasegawa M;  Watanabe Y; Noda T; Eguchi I; Morita T; Yoshimoto M; Iwatsubo T; Takahashi H. Juvenile-onset generalized neuroaxonal dystrophy (Hallervorden-Spatz disease) with diffuse neurofibrillary and lewy body pathology.  Acta Neuropathol (Berl) 2000, 99: 331-336.   

Zhou B; Westaway SK; Levinson B; Johnson MA; Gitschier J; Hayflick SJ. A novel pantothenate kinase gene (PANK2) is defective in  Hallervorden-Spatz syndrome. Nat Genet 2001, 28: 345-349.                   

 

First published on Internet on Decembre 2002. Copyright by Renato Cocchi, 2002.            

 

Author's address: dr. Renato Cocchi, via Rabbeno, 3

42100 Reggio Emilia (Italy)                    

renatococchi@libero.it

 

Testo in italiano

Genetic and cromosomal anomalies

Drug modulation of stress reactions

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